Anyone else trying dextroamephetamine sulfate ?

[ngazerro]

Hi everyone,

Just wondering has anyone else tried dextroamephetamine sulfate? I have been on it for four months and done wonderful. I feel like my IC is finally under control. I was wondering if anyone else is on the same treatment and how they are doing? I can exercise and eat pretty much whatever I want. I was having rescue installs weeky, but I have not had one in a month. I am thrilled with my results.:smile tee I take 5mg to 10mg a day. Most days just 5mg. I have even skipped days and have felt fine..

[justice4j]

Hi,
I read your post with interest. Dextroamphetamine sounds like an amphetamine like stimulant. Can you explain what it is and how it helped you in a little more detail please?

If it's a stimulant, it seems like it would make your bladder more tense. I must be wrong because you are improving.

How long do you think you've had IC?

[ngazerro]

Hi,

Dextro is a stimulant. There is a study on it at www.urotoday.com. It has helped with my bladder pain, and it causes no retention.

I have been dx with IC over a year ago, but I have had it for over five years. After three surgeries thinking the pain was coming from my ovaries they finally did a hydro and stated I had severe IC. Pain was my main compliant. I had tons of pelvic and back pain. I could not exercise or sit for ant period of time.

I have been on Dextro for 4 months and now I exercise 4 days a week. I can sit for long periods and I don't have to watch what I eat. I can even drink coffee once a day. I sleep better, because I am active now and my depression is gone. It has done wonders for me. My stomach is not bloated all the time because it does not cause retention.

I have tried everything before and this is the only thing that has helped. I don't take any pain meds at all anymore.

In a couple more months my uro is going to do another hydro to see if there are actually any improvements in my my bladder. It would be great if there are improvements and it's just not masking the pain, but I will settle for the masking now.

[JanL]

I am so happy for you. Do you know the name of the study that was done? I went to the web site, but wasn't sure what particular study you were citing. I would love to read it and discuss this with my doctor. Thanks.

Janice

[lisabar36]

Hi, I am so glad its working for you. I could not find the study either. I went to the website and wasn't sure what one it was. If you could let me know, I would love to read about it. Thanks. :)

[ngazerro]

Here is the link: http://www.urotoday.com/index.php?option=com_content&task=view&id=2212118&Itemid=3341

There are other studies when you goggle IC & Dextroamphetamine.

I first read about it from other members here. Charisse was the first person to mention it. Kuddos to her!!:woohoo:

The only kicker is you can't be on any anti- depressants. I had to quit Cymbalta to try it. The withdrawls from the cymbalta almost killed me, but I am glad I did it. The great thing is I only take three meds a day..

[barbclay]

did you get it from your uro, or a pain doc? My pain doc says my uro is a "wimp" when it comes to pain meds/narcotics.... I have an appt with the uro on Thursday. If he doesn't like the idea of a controlled substance I will call the pain Doc. I am hoping if I could get this I could stop the lyrica. It works great but it makes me so sleepy, even on 100 mg a day.

[runningemiles]

What is the reasoning behind not taking it w/ antidepressants. I started on it a few months ago and my psychiatrist said I could take the Cymbalta also. I don't quit understand how it works but it has made me few better too. This is the first time in a year I have been able to run???? Would love ot hear others stories. Hopefully we can find a link to all of this. I also started it the same time i did the vit. D so I think both improved my energy

[ngazerro]

Barbclay, I get it from my uro. You might want to print out the studying and give it to them. I was the first person my Uro put on it. Now she has two other hard causes on it.. Good Luck:smile tee

Runningemiles, I am glad to see that it is doing well for you. I can run, dance, sit. It feels great to able to do that. My uro just said that the cymbalta & the dextro mixed could cause reactions. She did not say much more then that. The cymbalta was causing bad retention for me anyway. What dose are you taking?

[some_guy]

Wow I have been wondering about this. I read an old 2006 study on the NIH site that showed great promise and said that further controlled studies needed to be made but then I could find no others.

I am glad to hear it is working so well for you. I am printing all I can find now on dextroamephetamine sulfate and taking it to my doctor. If this even has a chance to work then I'm going to try it.

Thank you for posting this - another hope we all need

[some_guy]

I am so excited about this that I am shaking, I have printed everything I can find and am going to deliver it to my Urologists office and to my Primary Doctor today. I expect to be trying this by tomorrow, I'm not going to take no for an answer.

:woohoo:

I do realize there is a chance that it may not work for me, but I will be no worse off giving it a try.

[some_guy]

Okay well I went to Uro's office and Primary's office and dropped off the print outs of studies on this, I included a link to here for more reference.

I doubt my Uro will call but I'm positive my primary doctor will call me to at least discuss it and I'm pretty confident she will be willing to give it a try.

Based on what's known about dextroamephetamine sulfate as a treatment it seems that we will know within a few days to a week if it's working so I can't see any downside to trying.

[ngazerro]

I hope it works for you. I started at 5mg and I sometimes go up to 10mg a day. I always take it in the morning and if I need the other 5mg, I try to take by 3:00. You want to start as low as can. I felt good the first couple days, now after 4months I feel great. Somedays I don't even take any. Please keep me updated. I would like to know how others are doing.:rolleyes:

[some_guy]

My primary doctor just called and she said that the studies look promising and it's worth a try :woohoo::woohoo::woohoo:

I'll let everyone know in a few days how it works.

[ngazerro]

:woohoo:I am glad she is willing to try it..Remember start low & please let us know how it goes. I hope you have as much luck as I do..I alos saw in another post where you were talking about the price of Elmiron. I don't take it anymore!!I have not taken it in 4 months also..

[some_guy]

:woohoo:I am glad she is willing to try it..Remember start low & please let us know how it goes. I hope you have as much luck as I do..I alos saw in another post where you were talking about the price of Elmiron. I don't take it anymore!!I have not taken it in 4 months also..

Hi,

Yeah I am thrilled she is letting me try this. I'm going to go pick up the written prescription now and have it ready to try tomorrow morning - it's to late in day to take today. I hope it works for me, I will definitely update everyone over next few days.

THANKS AGAIN!!!

[SharonA]

Keeping my fingers crossed for you. :)

[some_guy]

OK script is at pharmacy, I pick it up tomorrow morning because they had to order the mg that was prescribed.

I'm going to keep notes from first dose on so I'll keep everyone updated.

Even if this does not work (but I think it might) it is the first new major hope I have had in months and will energize me to keep looking/trying - of course I so hope it works and I can say I'm done and report the good news to you all.

[runningemiles]

Are any of you taking the XR (extended release). I didn't at first and got horrible headaches which they said were due to the fact the stimulant gets so quick into your body and out. The XR slowly gets into your body. I have had better luck on that. Just wanted to throw that out there in case any gets any headaches and is wondering why. I did like the other better b/c I felt like it gave me more energy. Good luck

[some_guy]

OK I got the prescription this morning and took my first 10mg dose around 10:00 am or so.

I feel about like when I used to be able to drink 2 cups of good strong coffee. I don't have any jitters or anything like that I just feel more alert.

As for symptom relief well nothing to note but it's far to early to expect anything.

Will keep you updated...

Cheers!

[runningemiles]

Is it the regular dose or XR. That is how I felt...more alert and awake for once in my life. I am glad it is going good so far.

[some_guy]

Is it the regular dose or XR. That is how I felt...more alert and awake for once in my life. I am glad it is going good so far.


Hi,

It's the regular full release tablet. Yeah so far I just feel alert although I'm kind of behind on abnormal potty schedule LOL but who knows and I'm not complaining.

[ngazerro]

I hope it works for you.. You might have wanted to start on the 5mg first. I don't take the 10mg at once. I take 5 when I get up and somethings 5mg at 12:00 or sometimes 3:00. I even split the 5mg and only take half for my second dose. I found taking it all in the morning it would ware off by late afternoon.

[some_guy]

I hope it works for you.. You might have wanted to start on the 5mg first. I don't take the 10mg at once. I take 5 when I get up and somethings 5mg at 12:00 or sometimes 3:00. I even split the 5mg and only take half for my second dose. I found taking it all in the morning it would ware off by late afternoon.

I kind of wanted to just take 1/2 tab and bounced it back and fourth in my head but I decided I should do what my doctor said. She wants me to take 20mgs a day at first and call her next week, she said that 20mg is a relatively small dose and that it would be best to follow what has been done in the studies she read. I have to admit I was scared at first taking that tablet but now that I'm a couple of hours in I am relieved and don't foresee any problems.

Thanks :)

[ngazerro]

The only reason I say start low, because if that works then that is great and will give you more room in case you build up a tolerence to that dose. I do believe people do build up tolorences towards drugs. I hope all is well with you and it works wonders for you...:pray:

[some_guy]

The only reason I say start low, because if that works then that is great and will give you more room in case you build up a tolerence to that dose. I do believe people do build up tolorences towards drugs. I hope all is well with you and it works wonders for you...:pray:

I mostly agree with you and I really appreciate you posting about this first and really really appreciate you posting back and fourth with me about it. I agree that you have to be concerned about tolerance with this maybe even morso than pain meds.

I think my doctors approach is to start with the dose that has worked in the studies to get a good trial for a few days to see if it helps as much as those in the studies. She did say that if it went well we might lower the dose and she's talking like within a few days. I'm to call her early next week. I think it is that and the fact that this is a highly controlled drug as well as potentially dangerous if misused so she wants improvement pretty quick as in the studies in order to consider continuing.

That all being said I ended up only taking 1/2 tab (5mg) at 3:00 because it did not feel like the first dose had worn off enough and I was concerned. So I've had 15mg today, feel fine, ate well and am ready for bed and feel sleepy so alls good so far.

Thanks Again!

[PurpleKitty]

Does anyone know how this drug works to help IC? It seems like it goes against everything that has been proven successful. My rheumy recommended I try it for fibro fatigue but I refused thinking he was a bit crazy suggesting a stimulant type drug for someone with IC :loco: I may regret that decision. My rheumy told me alot of fibro pain is related to fatigue and if the fatigue is "taken care of" it helps to decrease the pain and depression that goes along with it. What are the side-effects?

[some_guy]

Does anyone know how this drug works to help IC? It seems like it goes against everything that has been proven successful. My rheumy recommended I try it for fibro fatigue but I refused thinking he was a bit crazy suggesting a stimulant type drug for someone with IC :loco: I may regret that decision. My rheumy told me alot of fibro pain is related to fatigue and if the fatigue is "taken care of" it helps to decrease the pain and depression that goes along with it. What are the side-effects?

Hi PurpleKitty,

Well the research studies don't say much about how it might work for IC with the exception of one sentence in the study that ngazerro posted which said something to this affect - The authors hypothesize that with IC there is a permeability in the bladder that allows toxins to get in that causes pain and the drug seems to correct that permeability defect.

[some_guy]

Report: first night on this medication.

I went to bed about a half hour later than usual because I felt kind of awake. Once I turned TV off I fell right asleep without any problems which was a concern at first.
Interestingly I did not get up to use bathroom at all last night but I've had just a few nights like that since I started hydroxyzine several weeks ago. Before hydroxyzine I was up 3-4 times then with hydroxyzine it went down to 1-2 times with the rare not waking up to go at all.

So today is day two, I am relieved that I did not have any weird side effects and feel hopeful that I may start having some benefits.

[ngazerro]

That is awesome!! Good luck with day two. I just drank a full cup of coffee.. It feels so good to be able to do that. I have also started adding vitiamns back to my diet.


Purplekitty,

I also have fibro.It does help the Fibro, but sometimes at the end of the day I feel the fibro, but I exercise alot now. I don't take anything else for pain anymore. My fibro doctor use to have me on ultram 3x a day and cymbalta. I don't take either anymore. It has helped with the fibro fog and the depression form both IC & Fibro. I not sure why, but I think it is because I can exercise now and that helps your body with stress.It has actually helped with my IBS to. I do believe it has helped the most with my fibro fog. Somedays I was having such a problem that work was getting hard to keep up with. It was so fraustrating and depressing. I have had few days like that in the last 4 months.

Besides all the studies, my one theory of why the dextro helps my bladder, is because it does not cause retention. That way the pee does not stay in your bladder long enough it hurt it. I told my doctor that, and in a couple months we are going to another Hydro to see what my bladder looks like. It would be great if it also looks better...It looked really bad with my first hydro 1.5 years ago..

[some_guy]

I just drank a full cup of coffee.. It feels so good to be able to do that.

Wow that is great!

Oh how I love coffee, when I get better I'm going for a Starbucks cafe mocha in the biggest cup they have :)

[ngazerro]

Starbucks, that is where I went!! I would give it a little while though..:smile tee

Keep us updated.

[Lauran]

Hi I am very new to this and so confused but would like to know what symptoms the dextro has helped with. There is so much out there and I'm not feeling a lot of hope. Thank you for even a bit.:angel:

[ngazerro]

Hi Laura,

It has helped me with my bladder pain. I had lots of back, pelvic, kidney pain. Sitting for any period of time made it worst , so did exercise. The detro has helped with all the pain...

[some_guy]

Update on my second and third day with this medication.

Second Day Friday May 2:

Took the medication around 6:30 am. I took my dog out for a short morning hike, while out the med started releasing in my system and I felt some extra energy noticed I had less of the normal testicle pain when walking. After hike I logged onto my computer and started working, I was pretty busy working on a something that required lots of concentration. By mid afternoon I noticed that I forgot to take my pain med earlier. This was a good sign because usually the pain and burning trigger me to get the pain med so forgetting meant the pain and burning were less although by this time I was starting to feel it. So I took the med about two hours later than usual.

I had to go to a late afternoon meeting in Washington DC which is about an hour drive. The drive out was fine and I did not even stop to pee, normally I would have stopped twice. I attended meeting and headed back but by that time rush hour on I-95 had hit and of course accidents and heavy traffic brought it to a crawl. Took over two hours to get home, by the time I got home I was in pretty bad pain again and just a little discouraged about the new med. I took pain medication and within a little while I was fine - noting that pain med took the pain and discomfort much further down than normal.

So basically I had a better day than normal, skipped one of the pain meds, had a few less pee breaks and was in a fairly good mood most of the day.


Third Day Saturday May 3:

Took the medication around 6:30 am. Took my dog out for a short morning hike, walking was better with less pain. I was thrilled went I went to the bathroom to pee because I had a nice strong stream and although it burned some I was not cringing and my eyes were not getting watery :woohoo:

My wife and I then spent the day doing some spring cleaning, pressure washing some patio stuff and such. Had to lift a few heavy things which put some strain on me and caused some heavy pain. Took pain med and again it knocked the pain down much further than normal - which is great.

Later we drove about an hour to take our son out to dinner. The trip out was better than normal but the trip back was becoming painful and the disgusting/vulgar feeling I get at tip of penis was making me very unhappy. Took a pain med and within half hour it knocked the pain down yet again much further than normal - great!

Most bathroom trips were better, stronger stream with substantially less burning and no tears to the eyes.

So basically I had a better day than normal, skipped one of the pain meds again, was in a fairly good mood most of the day, had a bit more comfortable pee and less often.


___

It's only three days on med now so to have some minor improvements at all is a good sign. One concern is that a few times when the pain kicked it it was like *wham* take that shooting/throbbing kind of pain - but maybe that is just because I'm so used to constant pain so having some relief then having it come back might have been sort of a shock instead of the pain really being worse. As for side effects from the dextroamphetamine well I have not noticed any, I have some serious dry mouth but hydoxyzine was causing that before the new med so I think it is still from that.

Cautiously Excited and looking for more improvements over the next few days :)

[ngazerro]

Thanks so much fpor the update! I am keeping my fingers crossed that each day will be better.:pray:

[SharonA]

SG...I hope, I hope, I hope... :)

[curlycue]

I think its great that its working for you. Good luck.

[snowgirl]

what type of md is prescribing this med? A psy MD? I don't think my pain md or my internist woudl give it to me. Please advice. I am going to ask at my next 4 week med check. I can't take any anti depressants so we had to consult a pscy md- he is trying. VIcky

[Lauran]

Hi, can anyone tell me if this helps with frequency and urgency? :help:

[purpleviolet]

I've been reading this thread with interest. My primary doc doesn't prescribe this so I hope the uro will. Anyway I came across a patent application for some sort of medicine for IC that would include the dextroamphetamine. It is very long article but clearly whoever submitted this is well versed about IC. You can find it at
http://www.freepatentsonline.com/y2006/0189698.html

Now the thing that is interesting is that these 2 patients had something called idiopathic edema which means they swell up or don't excrete as much urine when standing as well as lying down (I think I got this straight). THINK IC BELLY LIKE MANY OF YOU SAY YOU HAVE This doesn't mean that this drug would only work on these type of IC people (maybe other mechanisms at work) but it is a clue. So there is this test called the water load test which seems easy enough that we could do ourselves if you thought you were a candidate for trying this drug and needed to convince your doc...Here it is:

Morning and Evening Weights: Patients should weigh themselves nude and with an empty bladder before food or fluids in the morning and at bedtime. A mean weight gain >0.7 kg is consistent with idiopathic edema.
Water Load Test: After avoiding diuretics for at least 10 days, the patient drinks 20 mL/kg body weight (maximum 1500 mL) uniced water over 20 minutes, sometime between 7:30 AM and 9:00 AM. The patient collects urine every hour, starting 1 hour before the oral fluid load and ending 4 hours after. On the first day, the patient should be walking slowly or standing during this 4-hour period. On the second day, the patient repeats the fluid load and urine collection, but should be recumbent during the 4-hour period. In patients with idiopathic edema, less than 55% of water load is excreted in the upright position and more than 65% in the recumbent position.

This test is also described in less detail in the patent application. I just think ICers should try this. I don't think I fit the bill, but I will try anyway. I'll let you know. You obviously need to be at home for this and can measure pee. PV

[ngazerro]

Hi purpleviolet,

I have never did the pee test, but I do know I use to retain fluid. I can also say I don't have the IC belly anymore. It could be from the dextro, but it could also be from the fact allows me to exercise now. It also helps with my IBS, which helps the IC belly also. I don't carry the water weight any more. What I weigh in the moring I usaully weigh in the afternoon. I used to vary about five pounds from moring to afternoon.

Laura, I am not sure if it helps with frequency but has helped me with urgency. I never had frequency. When they did the hydro on me my bladder was alot harder and smaller. My doctor never understood why I did not have frequency. I can't say what it does for frequency. Pain was my main problem and it has helped with that. I also don't have have urgency anymore. I used to get all nervous when I felt like I had to pee when I was out. I alway knew where the bathroom was. Now most of the time I wait till I get home without any problem..

SomeGuy, I truley hope you are getting some relief!!

[some_guy]

Answers to questions from vickyvale and Laura Nelson:

My primary doctor prescribed this medication for me. Ideally since it is a med that is being studied and shown promise as treatment for IC a Urologist should consider prescribing but mine seems to be stuck in the "Elmiron is the only treatment for IC" mode.

As for frequency and urgency - I'm only on my sixth day and I feel that it has helped, I have less frequency and urgency and noticed that when I do pee it is stronger stream. I have actually slept all night the last few nights without getting up to pee which is really great! Note: Hydroxyzine was helping some with frequency, I started that several weeks ago so I can't be sure that the new further improvement is the dextro or the hydroxyzine working better with time.

____________________________________


Update on my fourth and fifth day with this medication.

Fourth Day Sunday May 4:

Slept good, did not wake up to pee at all :)

Took the medication around 6:00 am. I took dog out for morning hike and felt pretty good, while walking I was looking at and thinking about some odd bushes in the woods and had a few moments of normal with no background thoughts of IC, pain or peeing and I thought WOW you almost forgot you had IC. The rest of the day went mostly well, did some gardening and further spring cleaning and did not have to pee every 15 minutes but rather every 1-2 hours. I did have some strong pain but managed to skip one dose of pain med and when taking pain med it knocked the pain down way further than before. Had severe dry mouth again but I think that is the hydroxyzine.

So basically I had a better day than ic-normal.


Fifth Day Monday May 5:

Slept good, did not wake up to pee at all :)

Took the medication around 6:00 am. Took my dog out for morning hike, had some substantial pain. I started thinking oh well just like every other hopeful med that started to do something this one fizzed out to - this stinks. I was starting the day with a bad attitude but realized that hey it's only been a few days on the med so lets give it a chance and shook off the attitude. I also thought about some of the heavy yard work I had done the day before and figured that I pushed myself to hard and probably just did to much lifting, digging and also bouncing on the lawn tractor and that's why I was hurting so bad. The rest of the day and night was bad but not as horrible as it can be and frequency was still way down, it still burned really bad just not as often. I did not skip a dose of the pain med which bummed me out a bit thinking about all the different pills I have to take. Ended the day somewhat unhappy but decided tomorrow would be better and went to bed early.

So far today I'm starting out pretty good.

___

So five days in on this med I have had some real improvement that is encouraging, a little setback that was discouraging but maybe simply brought on by to much physical exertion. I'm thrilled to not have to get up and pee at night although I am waking up about an hour earlier than usual mostly because I have to pee - but hey I'll take that over being up 2-5 times. Frequency is way down, still burns but less times burning is good. Other serious pain (testicles) has gone up and down, pain med knocks pain down further than before which is great.

All in all I think this med is helping and I have hope that it will continue to help more and more each day until there are little or no symptoms.

[ngazerro]

Some Guy, it is good to hear that you are having some relief. I did notice that I did more the better I felt. Sometimes I pushed myself too much and caused pain. I had to get my body used to doing things again. I wish it was helping wioth your pain more, but is it early. I still had pain when I started the dextro. It has been four months and I don't notice my bladder most days..

Hang in there!!:smile tee

[snowgirl]

so it looks like internists are ordering this. OH mine won't do that neither would my uro too old school. Hey maybe my pscy md would I will go back and read all of your posts and study them. So for some of you this had made remarkable difference in your IC?? Yet you can still rest, and go to sleep at night. Vicky

[some_guy]

Update on my Sixth and Seventh day with this medication.

Sixth Day Tuesday May 7:

Slept good, did not wake up to pee at all :)

Took the medication around 6:00 am. I took dog out for morning hike and felt pretty good. Started work going pretty strong but by noon was having sme trouble with being able to stand sitting. All and all a pretty good day, pain was down and the pain med worked really well in knocking it down to the almost forget it is there point. Some burning and the indescribable disgusting feeling that makes me crazy was present more than it had been the last few days which really bums me out and puts me in angry mode/mood. I was under a lot of business stress which probably made some things worse.

So basically I had a better day with less pain than ic-normal but some other symptoms were more pronounced. Frequency is still way down from what it was before new med.


Seventh Day Wednesday May 7:

Slept good, did not wake up to pee at all :)

Took the medication around 6:00 am. Took my dog out for morning hike, while out I felt some nervous/jittery feeling for the first time taking this med. Started work but still had a little nervous feeling then I realized I had not taken my flexeril and hydroxyzine morning doses. I figured that might be why the dextro caused the nervous feeling because I did not have the sedating effects of the other two meds in me. I took my doses of the other two meds and continued working, after a while nervousness went away. My pain level was again down but still serious enough to take a pain med - pain med again worked better than it had before the dextro which is great. I again had some burning and the indescribable disgusting feeling that I hate so much but it was less than before starting dextro but more than the last few days. Frequency was also way down again compared to before the dextro. I had a lot of business stress again this day so I feel that it made me worse than maybe I should have been at this point on dextro.

___

I am not where I had hoped to be taking this new med but the improvements are substantial and seem to be due to the med. I have had a lot of extra stress lately with my business, it has always been somewhat stressful but it is even more so now due to nine months of neglect by me because of IC. I know the stress makes me worse so I need to try to calm that more.

I am wondering about a question that came to mind when I had nervousness for the first time taking the dextro - it seemed that because I had forgotten two other meds that have sedating side effects the dextro had more effect on my system. This brings up the question of maybe the flexeril and or hydroxyzine is counteracting the dextro and not allowing it to work to it's full potential. I'm going to see what my docs says about skipping the flexeril and hydroxyzine for a few days to see if the dextro works better.

Thanks for listening

[ngazerro]

Some guy,

I was hoping for better results for you. I am still keeping my fingers crossed!! I take zanaflex & hydroxyzine only at night. I would see what your doctor says. I have not had to get up in the middle of the night for months now, and that is nice.

Stress always makes me worse. Hopefully you can do some things to not think about things..

I just got back from my uro and they have tried 3 other people on the dextro and so far they are having really good results. They have been on it for three weeks. My doctor is giving everyone whom servere IC the choice of taking the dextro. I have been on it the longest, which is over 4 months..:woohoo:

[some_guy]

I'm on my 10th day now and I have some real improvement that coincides with taking the dextro. I have lessor pain that is almost fully controlled by pain med - best I could expect before was to dull it enough to stand it. Frequency is way down almost remarkably so, yesterday I counted and I only had to pee six times which is way better than 15-20 times. When I pee it still burns some but it's much easier to stand when it comes out fast and strong and am done in record time. It actually almost feels good to pee because it feels more like the old days when having to pee bad was just a relief to do.

So again I'm not nearly as better as I hoped to be by now on this med but I'll happily take the improvements that it seems to be making and hope for continued improvements.

The last two days:
I tried and pretty much kept the work stress under control because stress days always make me worse. I stopped hydroxyzine and flexeril just in case they were somehow interfering with the dextro - doctor does not think they would interfere but it's OK to stop them.

[ngazerro]

Some Guy,

That is great! I know what you mean about peeing. Untill I started taking the dexro, I had forgotten how it felt to really pee. Before I did not have a strong steam either. I think is is why it has helped my bladder out so much. Before urine would just stay in the bladder and cause pain. I am glad it is helping with your frequency. I never had frequency so I can't tell the difference. I don't get up and go in the middle of the night anymore though.

I had a rescue install on thursday of last week. I ended up having pain in my bladder for the first time in months. I have decided to cut them out for a while. I was not in pain before we did, my uro just thought it would be good to coat my bladder.:confused:

[BrieICN]

Greetings:

My main problem is frequncy. Does dextro help with that?

Thanks,
Brie

[lisabar36]

Hi everyone, I decided to see a psych doc and ask for this med. I went yesterday and I went to a reputable doc, I gave him the print outs and he read them thoroughly, and he asked how long I was on cymbalta, I said a month and doing great and he said it takes atleast 6 weeks to start working, and he said that paxil cr was known to cause retention but he has not had that problem yet with Cymbalta and the patients he has seen so far on it, he said its not really known to cause retention and I have no retention at all on it, I actually urinate better now then I did before. Now he was not wanting to give me the dextro because I am so thin, he said it causes weight loss, he said he could give it to me for a month and weigh me next month and if I lost any weight I would have to come off it, I don't want to loose weight, he said it supresses your appetite and is not good for high blood pressure, can cause tachycardia. The pharmacist said it can make your heart flutter, thats what people on it have been reporting. You can build a tolerance level after a while and the med may not be as effective and the withdraw can be pretty severe, severe fatigue and depression. These were all things he was saying can happen, as with any narcotic which it is considered. After hearing these things and of course with my weight, I decided to stick with Cymbalta because its working so well and I can't afford to loose any weight, or take any chances. He said I could take it with Cymbalta, but it is very risky with my weight. I just wanted to share what I learned about the drug and I was really wanting to give it a try, but after careful consideration and Cymbalta is really starting to work well, I don't want to fix whats not broken, I would love to have relief from pelvic pain and frequency but I cannot afford to even loose a pound. So its really not a good choice for me. I am happy for everyone it is helping!!!!! I thought about trying it once, but why when I know I won't be able to stay on it long. So just anyone that decides to try it should fully research it, only because it acts as a stimulant and anyone with high anxiety can feel worse with there symptoms. Of course it affects all of us differently. I don't have anxiety, but for someone that does it can worsen there symptoms. It also can cause trouble sleeping, so for someone already having trouble should be careful. Again not saying it will, we all react differently, but the doc did give me a full description of what can happen and I just wanted to share it with everyone. I would love to hear how well its working for everyone and look forward to reading the updates. Just because it can cause weight loss, does not mean I may experience it and that it why he gave it to me to try. :) Lisa

[ngazerro]

Lisa,

Thanks for the update. Sounds like the cymbalta is working great for you. It caused too much retention for me. I can honestly say that the dextro has been the only thing that has made such a difference for me. I am glad I don't have any of the side effects that you mentioned. I sleep great and I have not lost any weight. I could stand to lose about ten pounds, wish I did have that side effect. lol the dextro has pretty much put me in remission, and I am grateful for that. I guess that is why they have so many options to try for IC. My uro was at the point of just sending me to pain management to start narcotics; this has been a much better choice for me. I have not taken a pain pill in four months..:woohoo:

My uro is trying it on three other of her hard IC patients and is having great success. She is thrilled with the results so far. I am glad there are options for those of us whom the traditional IC medicine has not worked.

[lisabar36]

Hi thanks, he did tell me I could try it. So in 4 months you didn't loose any weight? Thats good to know. Has it worked the same for you in the 4 months or do you think you may need to increase the dose? Do you take 10mg in the morning and thats it? Sorry for all the questions. Did it help your frequency also? I did tell him I really need help with frequency issues and thats why he said to try it. He just had to tell me the pro's and con's. Thing is if I try it and it works and I loose any weight he will take me off it and then I will be upset. :( Thank you so much for sharing your success.

[ngazerro]

Lisa,

I have been dieting and exercising four times a week for the last three months and I have lost a big total of two pounds!!:cussing:I ate less when I was on the cymblata. I take 5mg in the morning when I get up. Sometimes I just take 1/2 of the 5mgs, and I need more I take another 5mg at lunch or at 3:00. Today I have not even taken it and I have been at work for two hours already. Yesterday, I only took 2.5 mgs all day. I actucally forgot to take my other dose. No, I have not had to go up, I have actually been using less lately. I have not smoked in 12days but I drank coffee twice this week, and it did not bother my bladder at all. Why this medicine has worked so well for me , I don't know. I really don't understand it myself. I tried everything before: anti-depressants, topamax, loritabs, Elmerion, instills, and nothing worked for me. I still do take Zanaflex ,Atrax, and procardia at night.

I do still have some fibro pain, but I don't take anything for it. I am not sure if it is because I exercise more or that I am just not taking anything for it that, I feel my fibro. My rhuemy put me on procardia for my raynauds. He said the dextro might be effecting my raynalds, and we would watch it. I have not seen any diffrence in the last four months from the dextro. My rhuemy gave me information on Scleroderma, last time I was there. My test for ana was negative, but he seems to think I still might have Scleroderma, and my IC may be a part of that. Boy, talk about frustarting!:cussing: Sometimes I really think doctors are useless...Just when I think I have conquered my IC, they throw something else at me. I am hoping they are wrong and it is just Fibro. I do believe Fibro is the better of the two evils!!

[lisabar36]

Oh wow, I hope your docs are wrong to!! I have fibro also. Thank you so much for sharing this info with me. I really appreciate it. I am so glad your doing so well on it. That is GREAT news. :)

[Charisse]

Hey everyone I'm so glad to hear that there are some people benefitting from the dextro. Who would have known? I wish the uros would hurry up and do some more studies on it! I emailed the info to my Uro-GYN earlier this year but he said he didn't feel comfortable prescribing it because it's an amphetamine and highly addictive and he was concerned about the lack of studies done on it. Since then my Uro-GYN has retired so I'm going to have to find a new dr eventually anyway and I will ask about it. I am concerned about side effects since I do have major anxiety and I also have a horrible time sleeping. I take Ambien every night in order to sleep properly. I believe my sleep problems are related to my fibro but I seem to be very sensitive to any kind of stimulant. I would love to lose some weight so that wouldn't be a bad side effect. I also have the horrible IC belly and I cannot do any type of exercise except walking. I'm on Elmiron which has helped tremendously. I can eat almost normally again (even coffee is good) but I still have not been able to do any kind of bending over or lower body exercise without major flares. Elmiron doesn't seem to be doing a thing for that. It's like there is so much pressure and fluid down there and my stream is also very weak. I am pregnant right now so it's not even an option for me currently but I will be addressing it next year when/if I find a new Uro. Again I'm so happy this med is helping others!!!

[Mothergoose]

Hi I have a ? for any one but some_guy put the idea in my head. I have been on hydroxyzine for a few months, it helps alot but the thing is every once in a while I have to stop it for a couple of weeks becasue my feet swell up from it. I stopped it a couple of days ago, and I have been feeling slightly jittery, do you think this is why. I should say I am also fighting a bug of some sort, so that could be it too, but this jittery feeling is new to me.

I asked about dex as well, my Dr. had not heard of it used for this. He didn't say no, I am haveing somemore testing done the end of May and he wanted to wait till after that and talk about it again.

Does anyone one know if you take valium for PFD and Dex, do they work together oaky, one is a stimulant one slows you down. I am not on either but the Valium has been mentioned for the PFD, after more testing. I have a new uro so he wants to see for himself. He does agree I have IBS,PFD, and IC but he wants to rule out anyother things too.

Thanks Mothergoose

PS I think it is great you are giving us a day by day update on your progress with dex. Some_guy thanks

[ngazerro]

Charisse,

I am glad to hear you and the baby are doing great! Kuddos to for bringing the dextro to the board. It was after your post that I tried it, and thanks soo much. It really has changed my life as far as my IC is concerned. I did have some anxiety before I tried the dextro, and anti depressant seem to make it worse. I have not had any problem with anxiety since I have been on the dextro. I take a low dose also. I wish I could loose some weight on it, but I still get hungrey. I actually ate less on the cymblata. I quit smoking 12 days ago and I have been eating dounuts all today at work..:tsk: I really have to stop that! I could stand to lose 10 or 15 pounds! As far as sleeping, I also have fibro, which disturbs my sleep at times. I use to take ambien everynight. I stopped taking that about 3 months ago and I take one tynenol pm at night sometimes. I have not taken Elmiron in four months. My biggest compliant was I could not sit very long or exercise. The PDF & IC would kill my back and my stomach would swell. I don't have that problem anymore. I hate to jix myself and say that, but it is true. By the time you have the baby I will have been on it close to 9 months and I hope I am doing the same. :pray:
Congrats on the baby! I have three of my own, 15,17,19 all boys!

Mothergoose,

I too have PFD, and IBS. I don't take valuim, but I do take zanaflex for my fibro and PFD at night. I have not had any problems with my PFD in the last 4 months. I used to get it shocked down there by the uro for my PFD. It was supposed to relax it. How fun! I forget what they call it, but I don't think it did much..The dextro has seemed to help with the PDF.

Some Guy- Hope all is well with you!:smile tee

[lisabar36]

Hi, I decided to give it a try today because then I would be doing the what iffs and I was really curious to see how it affected me, the oddest thing is I am actually more tired today. I took 5mg, and after I took it I had to urinate every 15 minutes for like 2 hours. I did have some coffee because I was tired but I waited to see how the pill would effect me, then I had the coffee and that usually wakes me up a little and today it didn't. I don't have any bladder pain, but my frequency did increase after I took it and because of that my lower back started to hurt more today. I am probably going to be the odd ball that get the reverse effects. I don't know if it was just to small of a dose, and my frequency could just be bad today and its not from the med. I don't understand though why I would feel more tired. Unless I am just more tired today and the pill just didn't affect me at all. I didn't even take the cymbalta yet because I wanted to wait and see how the med worked, I didn't want to take it together. I take Elavil at night and I wonder if thats why. They did say it slightly interacts with Elavil and Cymbalta so could be the Elavil. :confused:

[Melanie R]

Hi everyone,

Just wondering has anyone else tried dextroamephetamine sulfate? I have been on it for four months and done wonderful. I feel like my IC is finally under control. I was wondering if anyone else is on the same treatment and how they are doing? I can exercise and eat pretty much whatever I want. I was having rescue installs weeky, but I have not had one in a month. I am thrilled with my results.:smile tee I take 5mg to 10mg a day. Most days just 5mg. I have even skipped days and have felt fine..



I was wondering if it helps with the urgency /frequency as well???

[purpleviolet]

I sent the nurse practitioner all the info on this med that I could find as far as IC was concerned. I wrote a letter and asked her to call me if she could talk to the doc about prescribing it because I wanted to try it before I get to my appt. but no one has called or responded to my request. I think if a patient sends something to the doctor or nurse they should acknowledge it. I even called and left a message that I was sending something and thanked her in advance for looking at it. I'm peeeeeeeeeeevd. Are they so overtaxed that they have no time or is it they don't like patients who are pro active.

[Mothergoose]

I agree they should at least acknowledge they got what you sent, but most Dr. are not going to respond to a letter or articles, but i bet he will have looked at them and will be ready to talk about them when you go.

I am quite sure for a script like that they will not rx with out talking to you. I don't know what class of drug it's in but I am sure it has to be documented etc. because of the chance for abuse.

Mothergoose

[ngazerro]

I agree with mothergoose they should at least acknowledge they got what you sent. Maybe they were just really busy, and they will get back with you. I know it must still make you frustrated. I don't think they will just call it in either. My uro is going through a questionnaire before they let anyone try. The number one issue is you can't have any prior drug addiction problems. They make you sign all the paperwork, monitor everyone closely. If you have had a problem with past drug abuse, they will still consider you as long as you agree to test to make sure your in the right levels. I guess it is no different than going to pain management.

[some_guy]

Hi Everyone,

Sorry I've been of the boards for a little while and have not given an update on the dextro.

Here is where I stand right now. I had some improvement that coincided with starting the dextro, frequency went down and is still down, pain never really went away but pain meds reduced the pain better than ever before while taking the dextro. I actually had times for the first time on any med that I could forget about IC which is really great if only for a few hours.

Unfortunately my trial has run into a snag, I believe I now have a hernia which is causing lots of pain and kind of throws the results of the dextro up in the air because of it being a new component of pain in the same general area. I'm going to a hernia specialist next week.

So for anyone considering trying this I have to say that I believe the dextro has great promise and it's certainly worth a try if your doctor clears you to try it.

[lisabar36]

Hi, I had to stop the dextro. It stimulated my bladder and I had the worst frequency with it, I was urinating every 15 minutes and my bladder hurt so bad. I had severe spasms, I woke up 6 times at night to urinate. I haven't woke up that many times in 9 months. I had retention. I didn't think I was ever going to stop urinating. So I stopped it and I am going back to normal. Last night I did not wake up at all to urinate. I wanted to give it a shot. But my bladder did not like it at all. My bladder hurt so bad, I could barely walk. I stopped it and it went away. :confused: I don't know why it had this effect on me. I spoke to my psych doc and he said it can have a stimulating effect, so therefore thats what it was doing to my bladder. But he read the studies I gave him and I wanted to try it and so he let me try it. I am happy for the ones it is helping. I see my old uro next month and I am going to let him know I tried it and what happened and see what his feeling is to why it did that. Just wanted to share my experience.

[Bea]

wow I am just reading all this no.. this all sounded so promising... lisa .. i a so sorry it didn't work for you... I would most likely have the same reaction as you did.. and better yet, probably couldn't get a dr to prescribe it to me :(

[lisabar36]

Hi Bea, I was hoping to have better results. :( It set me off into some major pain, I could see some pain, but this pain was horrible and I could not stop urinating. I was so glad when it got out of my system and of course sad it didn't work but I am happy with my med regimen now. Goes to show how we are all so different. :)

[snowgirl]

Is dexoamephatamine on the same lines as ritalin? Just wondering. VIcky

[lisabar36]

Hi Vicky, they are both stimulants. Ritalin has a different ingredient though, but they are both used for ADHD. :) Lisa

[barbclay]

Hi guys, I was so excited to go see my uro last week. I had called ahead and said that I wanted to discuss dextro. The nurse said had had heard ofit, but we would talk about it at our upcomming appt. SO I took all of the info I could find,printed it off and took it with me. He just looked at the word Dextro and said it was a controlled substance and that he wouldn't touch it. there was no arguing with him. I was so mad that he wouldnt even read any of the info I had. He told me to try my GP. My gyno has been very helpful with my IC so I thought about calling him. Which doc did you guys get your dex from?

[ngazerro]

Hi Brabclay,

I got it from my uro. I think other people has gotten it from other doctors. It does have to be montiored so I guess your uro is not comfortable doing that. Sorry you did not have any luck with your uro.

[lisabar36]

Hi, I am late on posting this, I did return to normal after stopping the dextro, I did want to try it one more time only because I wanted to be sure it was the dextro and not something else. I tried it again and I went to the bathroom more times then I ever have in my entire life, this was a few weeks ago. I woke up like 15 times that night, I was MISERABLE! It was the most horrible experience. About 30 to 45 minutes after I took it the frequency started. I went every 15 minutes the entire day and I had the worst bladder pain and spasm. I called the doctor and he did some research for me and he recently called me back and he said, that drug has been studied more on pelvic pain, not frequency. He said that it is a stimulant and therefore stimulated my bladder, which in turn caused me severe pain and frequency. He said someone with a normal bladder probably wouldn't even notice it, but someone with an IC bladder, or someone who suffers frequency, it can have that affect. Now he said it would not be that way in all, because everyone is different in the way we respond, but for me it stimulated my bladder and therefore caused my IC to act even worse. So I only wanted to share this so everyone knows the experience I had incase you try it and feel the same way, I only took 5mg each time. I did not feel alert at all or anything like that. It just made my symptoms so much worse. I know it can work for some and thats so great, I wish it would have worked for me.

[snowgirl]

Lisa

My pscy md wanted to give me ritalin 5mg which would be the same effects of dexamph. I said nope don't want to try it. My bladder I would be just like you it would increase my frequency. Plus with ritalin I did not want to go through withdrawal off a stimulant. I am not going to take the ritalin. Did not even fill the script or take it. Like you said some things work for other so differently however, sure you still want to try hoping that it could be the one breakthrough med for you. Vicky

I am sure Ritalin would and could increase my anxiety. Vicky

[purpleviolet]

I was disappointed that after giving all the documentation to my doctors that they are not willing to give it a try with me for a week or so. They just threw the issue back at me. They are the only ones because they have known me for so long that know that I am not some sort of drug abuser. It would be very hard for me to convince some new doctor to let me try it. I am mad. I asked the nurse to help me find one that would prescribe the dex but she wouldn't. They are Closed minded and recalcitrant. PV

[snowgirl]

I know for a fact that my uro nor my family md would give it to me either. Pscy md that wanted me to try ritalin -same line of drug stimulant. I do think psy md' are probably more comfortable prescribing that type of drug goes along with ADD etc. Vicky

[lisabar36]

I did go see a psychiatrist for it and took all the info. So if you want it, it may be worth a try finding a psych doc and taking all the info with you. I know my uro said no and so did my family doc. They said they would rather me be followed by psych cause it is a psych med.

[ngazerro]

It was my uro whom put me on it, and about four other hard cases in his office. I have been in complete remission now for at least 4 out of the 5 months that I have been taking it. :woohoo: I don't have instills anymore, and I don't notice my bladder at all any more. I even go days without taking the dextro. No pains pills, anti depressants or anything else for my bladder. I have had a complete change in my bladder. I was dxed with servere IC and tried everything for over a year, and this has been the only thing that has worked. I can exercise, have sex, and I don't have to watch everything I eat. It has truley been a blessing for me. It has also worked well for others in my uro's office.:bow: I guess that is why we all have different IC.

Lisa ,
Sorry to hear it did not work for you! Hope you find something that does.:smile tee

[ngazerro]

The study also states that they stoppted all other treatments for IC while trying the dextro. I too stopped all other meds one week before trying the dextro. That may be the reasons I had such great response from it.:smile tee


PURPOSE: To determine if a very effective therapy for idiopathic orthostatic cyclic edema--dextroamphetamine sulfate--would alleviate symptoms of chonic pelvic pain of bladder origin/interstitial cystitis. METHODS: Two women with interstitial cystitis that had been refractory to various therapies were treated with dextroamphetamine sulfate (20 mg/day) without any other treatment.



[COLOR="red"]CONCLUSIONS: Dextroamphetamine sulfate can be a very effective therapy for recalcitrant cases of interstitial cystitis.

[lisabar36]

I am still so puzzled by this, I don't know why my body reacted that way. It didn't even make me feel awake or anything but I only took 5mg, but to make my bladder act that way. Maybe cause my other meds? I started it with all my other meds, but the pharmacist said it interacted with Elavil, but it was slight interaction. The psych doc said it just stimulated my bladder. :confused: I see him again Wednesday so we can talk more about it. I also see my uro. I guess I am so puzzled and a part of me wonders if its cause its the generic. If I even take Amoxicillin, it hurts my bladder SO badly and I will pee every 15 minutes to, I know that was generic, and now I list it as an allergy, but a part of me wonders if it was what the pill was made up of since I have always had such a sensitive bladder. Of course my uro understands antibiotics hurt my bladder but my psych doc doesn't understand that meds can hurt my bladder and make me spasm so he is thinking it stimulated my bladder. :confused: Guess its not for me even if that was the case cause I can't get brand name. I don't want to steer anyone away from this drug if they want to try it, I wanted to try it, and who really knows the reason that happened to me. I took a generic levaquin once and same thing. Not near as bad as the dextro but same type symptoms.

[ngazerro]

Lisa ,

I am sorry it did not work for you. It might be because of the other meds. Before I tried it I was on :
60mg Cymblata
400 mg Elmiron
50mg Atarax
Ultram 3times a day
Topamax 75mg
loritab when needed
Ambien cr at night
Zanaflex 8mg

I was taking about 16 pills a day! I quit everything when I detoxed from the cymbalta. I was so sick for about two weeks. I was so afraid to try anything else after coming off all those meds, but I went ahead with the dextro and I am so greatful that I did. Now I only take the dextro( 5mg or 10mg) and I don't have to do that everyday and my zanaflex at night (fibro). I am sure it is not for everyone, but it gave me my life back so far. I use to have to leave work after a couple hours because sitting was a killer. Now I work all day and go home and exercise. My uro is only trying it on people that have tired all other means of IC treatment without any help. Everyone is so different when it comes to IC. This is what has worked for me. Long term I don't know the results, but I am thrilled with my progress. My uro and I made an agreement that in the future that if my dose stops working we will go up to 20mg only , and if that does not work then I will get off it for a while.

I hope you find something that helps you.

[lisabar36]

Thank you :) I am on a few of the same meds you were.

[Boozer05]

How long did it take to work for you? I've just started taking it, I'm on my third day, and I notice the energy boost, but how long did it take for your urinary symptoms to go away?

[ngazerro]

In about a week it was getting better, three weeks to a month they were great. Six months later I don't even know I have IC. I wish you luck with it. What dose are you taking?? Please keep us updated..

[Boozer05]

Thanks, that's good to know... I'll be more patient with it. I'm taking a 5mg dose, which is the most my doctor would allow. He said that I could keep taking my Lexapro with it, but I'm getting off of it anyway because I think it's cause me major symptoms. How much are you taking? Is 5mg not enough to make any difference?

[ngazerro]

I take 5mg most days, I used to take 10mg some days but 5mg is enough now. Some days I don't take anything, but I have been on it for 6 months. The studies says 20mg a day. I wanted to take least as possible, because I hate taking anything. I would give it a couple more days...

[barbclay]

:woohoo:FINALLY!!!! My uro would not give it to me. He will not dealwith "controlled substances" he said to talk to my GP. I gathered up all of my info I had printed off and took it to my family doc. The doc did say that he had never heard of taking it for this reason, but he did give it to me since we had talked to the uro and my pain doc. I have been taking 20 mg for about a week. I am afraid to say anything that I could jinx myself, but I feel pretty darn good!!! The other day I even mowed our yard. I was a little sore that night,but it was completly tolerable!!!! Nothing like I normaly feel!!!! I also was taking lyrica for my fibro pain. It worked great for the pain, but I was so tired all the time. And, my hands and feet were really swelling. I haven't taken the lyrica for 4/5 days and the fibro pain is still little to none!!! And I finally have energy!!!!!!! I can play with my kids, and I am not ready for bed at 6:00-and I don't feel like I need a nap like I used to!!!!My husband and I are going on a BIG weekend getaway next week (the first in 12 years) with no kids. I was afraid that I wouldn't feel like doing anything, and now if things stay as they are I am sure I can have a great time!!!!!

[ngazerro]

Barbclay,

That is great news.:woohoo: I hated to jix myself also in the beginning, but my results did nothing but improve. The first month, I could still feel a little bladder pain, but six months later I hardly ever feel bladder pain, and if I do it only last a couple min. 98% of the time I don't feel like I have IC anymore but we all know it just does not go away. The dextro cleared my fibro fog more than anything. It was nice to think somewhat clear. I seem to be able to deal with the fibro better without the constant bladder pain. I :pray: that you have as good as results as I have had. Please keep us updated.

Thanks

[Wolfe]

I cannot -- cannot! -- begin to tell you how happy I am for you! I hope the improvement just keeps going on and going on.

I kind of think that in Virginia it's a lost cause (even the pain clinic will not give me anything stronger than Ultram for migraines - or for anything), but I'm going to gather all this info. I'm afraid of trying it too, but if it could replace one or two other meds, plus help the IC AND the Fibro, I really and going to think and discuss with whichever doc I can get to listen.

Thanks so much for sharing your experiences and please keep us informed. I'm delighted for you both!

[lisabar36]

Thats such great news. :woohoo: Its so nice to hear success stories. Keep us posted with updates. I have an appointment with a pelvic pain management doc in 2 weeks. I am going to ask him what he thinks happened when I took it.

[kfeldman]

Hi, Can someone tell me exactly what symptoms this drug is supposed to help? My most severe problem is pain. I have an interstim so frequency is good. I take pyrelle and the IC diet for burning so that is good. The pelvic/bladder pain is debilitating me. Out on disability for 5 months now.

Current daily meds from start of day to end:
60 mg morphine
300 mg lyrica
benefiber and miralax
amitiza (rx for constipation)
15 mg oxycodone every 3 hours (usually 4 daily)
10/325 percs (usually 4 daily)
90mg morphine at bedtime
elmiron
10mg valium (usually only at bedtime)
anti-nausea rx - zofram
vivelle patch
interstim

Any feedback os greatly appreciated. Kim

[ngazerro]

Hi Kim,

It has helped me with pelvic/ bladder pain. I have very little if any since I have been taking the dextro.

Nina

[kfeldman]

Wow! I almost cant believe it. One drug with low mg, safe, any side effects? and it removed the pain in how long? Did you have severe pain like all over the pelvic area? My pain is there 24/7. Starts at a moderate level in the am(if no uti or flare) and ends after like a days worth of Narcs. Have a look at my current daily meds. I am going to ask him about in Thursday. What do I need to get off (if you dont mind)?

I am very happy for you! Kim

[ngazerro]

:)my doctor wanted me off the anti depressants before she would try the dextro. I have heard of others being on both, but I think it can alter the affects. I stopped taking my topamax, loritab, ultram, cymbalta. I stopped taking the
Elmiron about two weeks after the dextro just to test it. I never needed to go back on it. You should talk with your doctor and see it maybe the dextro could help you. I have been really lucky with my results. Most of my IC pain came from sitting, standing or exercise. Let's us know what your doctor says!

[Wolfe]

Does anyone know how or why they started using this drug for IC? I see the study says they think it corrects the "permeability defect," but how did they figure that out? I'm definitely going to get online and do some digging.

[snowgirl]

I agree with mothergoose they should at least acknowledge they got what you sent. Maybe they were just really busy, and they will get back with you. I know it must still make you frustrated. I don't think they will just call it in either. My uro is going through a questionnaire before they let anyone try. The number one issue is you can't have any prior drug addiction problems. They make you sign all the paperwork, monitor everyone closely. If you have had a problem with past drug abuse, they will still consider you as long as you agree to test to make sure your in the right levels. I guess it is no different than going to pain management.

this drug dexoamph is a stimulant. It is a class 2 controlled substance. So it can't be called in and most mds you will get a 30 day supply with recheck. VN

[ngazerro]

July,

I am not sure what prompted them to try the dextro. I believe the reason it has help me so much is that I don't retain urine anymore, which in return, allows my bladder to get relief from the urine sitting in my bladder irritating it. I just wonder if they did another hydro what my bladder looks like now. Maybe it has had time to heal. My doctor does want to do another hydro sometime and compare the picture. My first hydro was dxed as severe IC. I wonder if it is just like everything else that mask the pain, but does not heal the bladder. It would be great to have relief and healing together. That would be too good to be true!

Nina

[Wolfe]

Nina,
In a way, the "permeability" thing doesn't make sense to me. Urine is sterile, so I don't understand the word "toxins." Unless they mean simple acids from food, etc. And whatever the heck it is in antidepressants that make me flare. (Really showing my ignorance here!)

And in a way, I'm thinking the "masking" theory is correct, because with extra energy, I just go and go and overdo and forget that I'm feeling bad. I'm thinking that a drug like this would easily fool me into thinking I was completely healed.

BUT in the end, I almost think there must be some sort of healing going on because so many people are having relief from multiple symptoms, both those with IC and those with Fibro, and are also able to give up other meds and not return to them for up to 6 months. I'll sure be interested in hearing how they're doing in another 6.

[Mothergoose]

ngazerro


Did I understand you right that with this drug you no longer retain urine? How much of a problem was this for you, it is a very big one for me, causing reflux into kidney and causing kidney pain too. My Gp said he would put me on this after I saw new uro, I have seen the new uro, but I forgot to ask GP for this. New uro is sending me to a uro who specilizes in neurogenic bladder.(bladder that retains urine) I just thought he would say wait until you see this other new uro. My other GP brought it up on his own about me trying this, he thinks it may make me sleepy because I have the reverse reaction to most medication.
I would be at the clinic in a heart beat if I thought it would help me pee, besides everything else it might do.
How much are you taking, what time of day. and what dosge did you start with, and did you increase it. Sorry about so many ? but I want some idea what others are doing before I go to GP.

Thank You Mothergoose

[green1577]

Hi everyone,

Does dextro help only with bladder pain, or does it help with vulvar pain too? All my pain is in my vulva and urethra--nothing abdominal. My back pain seems like it's always sore, and I think it's from the IC because it goes away for a few hours with instillations. But I know the bladder is painful because when they do that intravaginal exam it hurts a lot.

I couldn't get my pain doctor here to prescribe dextro, but if I think it might help with my type of pain I will try to get a GP to prescribe it when I go back to the U.S. in a couple months.

Thanks!

Anna

[ngazerro]

Wofle,

I have bee able to give up almost all my meds but the dextro. I am hoping that it is healing my bladder but won't know until I do another hydro. For the first time in a while I had some bladder pain. I drank some tea at lunch and I did not drink as much water. It onlt lasted a few min. but it made me step on tip toes. Then it was gone.:)It has been 6 welcomed months of relief for me.

Mothergoose,

I take 5mg when I get up and the another 5mg around 12:00. Sometimes I skip the second dose, and on sunday I don't take the dextro at all. This has worked for me.I too get alot of kidney pain, but most of the time the dextro helps. At least it is not so strong..

green1577,

It helped my back pain alot, but I do not have vulva and urethra pain.

It has really helped me..:)

[Mothergoose]

Thank you for the quick reply, I have some sort of bowel infection now that has everything in an uphevel, when things have settled down I am going to discuss this with my Dr. again.

Thanks Mothergoose

[kfeldman]

ngazerro,

What if any side effects have you had since you started this drug? Thanks. Kim

[ICNDonna]

I am closing this thread because it has become so long. Please feel free to start another thread if you wish.

Donna