How is everyone??

[ngazerro]

The boards have been quite from the new dextro users. It is because everyone is feeling better and don't have time to get on the broad? I hope so!!:smile tee

How is everyone doing?

[Wolfe]

I'm wondering too! Everyone got well and went out to party, left me here alone.

I will say that I'm flaring, the kind of flare I only get when I'm taking an antidepressant. I did have a cup of coffee yesterday, so I'm going to be good for a couple of days and HOPE it isn't the imipramine, doggone it.

I hope everyone IS out partying! I'm so glad for all of you, and if I can't take the imipramine, maybe the dex is my answer. Does it do anything for depression???

[Elle]

I'm wondering, too! Hopefully everyone's doing great!

[samandmichelle]

My IC symptoms are pretty much gone, bladder pain is at most 2 and usually my bathroom breaks are below 10 times a day. Still can't eat high copper, onions and fruits too often or it causes frequency (18 +). But everything else with the IC is gone... I have had pain as of late but thats cause my L3 nerve is inflamed again and the downside is because of the Dex I can't take any of my usual fixes for it. I am going to make an appointment with my Ortho Dr to see if there are any possible alternatives.

[funinsun18]

samandmichelle...I seen your post and was wondering why you cant take your "usual fix" cause of Dex?Could you explain more for me?

Thank you

[justice4j]

Hi Everyone,

I'm still taking Dex and doing well. The pain never gets above 3 - I'm hoping for 0 eventually.

My doc wants me to "ramp up" the dose. Well...for some reason last Sat. I got a flare in the midst of some pretty darn good days. So, I ramped up the Dex to a total of I think 12.5 - I should have written this down - it may have been 15 mg. Now that I think about that, I think it was.

Today, I took 7.5 mg. AM, and then 2 2.5mg doses during the day. If I could just wake up earlier and start the doses before 11 A or 12 N, I could get more in. But, if I take the doses later than 4PM, I can't sleep. I think my dose is going to end up being between 20-30 mg., which isn't really alot. A nurse I know has a son who is taking 30 mg. for ADD.

I figure this may not turn around quite as quickly as it has for some b/c I've probably had IC over 30 years - maybe even 40. There are years now where I look back on things and realize I was having very mild, hardly noticeable symptoms until THE FLARE I couldn't ignore hit.

I've been on Elmiron since I think 1997 continuously, and Ihave taken it intermittently before the thinking became that it shouldn't be discontinued in order to keep the bladder lining "repaired."

I've only been on Dex siince July 15th and only took 5 mg. AM and 5 mg. 4 hours later. The Sat. I had the flare, the Dex put it down in about 3 hours, which I thought was pretty amazing.

The studies used Dex 20 mg SR (sustained release). Eventually, I may try that. But for now, I'm raising the dose slowly, of course with my doc's knowledge and encouragement.

I think Dex is my answer, and I just hope I won't have to do intstillations much longer. I am really sick of them - been doing them at home since 1998, but there have been times when I only needed them a few times a month. I still need them right now once a day. Sometimes I can get away without any, and sometimes they burn. I'm trying to get so I can tell the difference between PFD flares and needing instillations and it is tough. My hunch is that the instillations burn when the problem is reallly PFD.

I also think I may have been in a longer flare - 15-16 months of IC/IBS/PFD than most of us who are on Dex???

For those taking Dex:

How long after your IC was diagnosed did you begin taking it?

How long before you felt like Dex had enough of an effect that you felt like you had a remission?

What doses of Dex are each of you taking?

Has anyone tried Adderall? I don't want to b/c of the saccharate and aspartate salts that are part of its SR properties.

My bladder now feels "bruised" like the Dex is definitely improving frequency, urgency and pain, that that sore feeling is from the lengthy flare and that it will quiet down maybe by Christmas, maybe a few more months than that.

I never get the energy surge that some of you describe.....maybe when the anemia is completely resolved I will. But hey, MY EYELASHES HAVE GROWN BACK IN and that means that the iron levels have to be rising b/c the low iron levels were what made 1/3 of my upper lid lashes - both eyelids- fall out. False eyelashes for about 3 weeks. What a pain... you don't realize how much you need those lashes to keep dust etc. out of your eyes - and that was one of the reasons I wore them. The other is obviously cosmetic. They were a little bit fun.....

I do think Dex is the right "road" for me but that it's going to take time to "perfect" the dose and have it do whatever it does to completely calm down the symptoms. I believe it will - I just have to have patience....:smile tee

[ngazerro]

I am glad to hear you guys are doing well on the dextro. I thought I had a bad flare wed. this week. I woke up in a lot of pain. I went to the doctor and it turned out to be a bladder infection. I am glad it was just not a flare. I am taking my Cipro for the infection and it seems to be getting better.:woohoo: I do believe the flare I had in July was caused by the infection. It just did not show up at that time. I thought I had it then because I had not had a flare in 7 months. When they tested my urine it did not come up with anything, but two weeks later it did. Now I just need to get rid of it.

Glad to hear everyone is doing better!:smile tee

[justice4j]

Hi Everyone,

Just a brief post here to report that I am doing well on Dex 20 mg. I start the day with 10 mg. then take another 5mg. 4 hours later and another 5 mg. about 2 hours later. I try to get the full 20 mg. in by 4 PM or I have trouble sleeping.

Still waiting for my energy level to improve, but the anemia is probably the culprit. BTW, for any of you with IBS, if you can eat and know you are/might be anemic, Ferrous sulfate is considered the most "binding" of all forms of iron. Okay.... so here is the usual disclaimer....discuss it with your doc.

When I first started Dex, I do think I had D as a side effect. Lomotil countered it and then the viral gastroenteritis struck - which I hope none of you get. It's wicked.

Now that the GE is resolved, my body is adjusting to Dex and the Ferrous Sulfatae 65 mg. is slowing down the gut. I've needed no Lomotil today! Played keyboards along with my SO on bass at his grandmother's funeral today and made the mistake of sipping water. Dex causes dry mouth. I had frequency for about 40 minutes with 3 trips to the restroom. Fortunately, the service was a little late starting and I retrieved my 7 Up from the car and the frequency/urgency stopped in time that I wasn't uncomfortable while playing.

Both of us were exhausted and took a 5 hour nap. I had 2.5 of Dex when I got home and still was able to take a nap.

Woops....this wasn't brief

Glad everyone is doing well. Dex is like magic and I hope that with growing pressure from patients more docs will be comfortable Rxing it so that we don't have to pay big $$$ up front to see psychi. ERRRR

Have a good week.

[camackin]

Hi everyone,

I haven't been on the postings so much lately. I got kind of discouraged that the Dex wasn't working miracles on me that I had hoped for, but I am still hopeful! That being said it has definitely helped more than any other treatment I have tried so far. I'm still having pain everyday usually between a 3 and a 7 out of 10, 10 being the worst most unbearable pain you can imagine, which is down from 5 to 9 out of 10 average it was before Dex. Sometimes I have days where it's 1 - 3 which are so gloriously wonderful =). I'm taking continuous birth control 3 months at a time and noticed a lot of spotting lately which I think also correlates with increase pain, then I found out that spotting is due to a drop in progesterone. I know when I used to get my period (hormone drop) the pain would be the worst. I'm am going to ask about different bc to maybe make the spotting stop and hopefully decrease pain.

I never had too much of a problem with frequency (10 - 12/day and 2 - 5/night) but that is decreased now too (5 - 10/day and 1 - 2/night).

Janet, I had a bit of a similar experience in that I had mild symptoms for years that I didn't recognize as being related. when I finally went to the dr a couple of times about it she didn't know what it was. before I got a chance to see a uro a UTI hit June 2007 (thought I had a kidney stone the pain was so bad!) and ever since then I have been in severe pain daily, but I hope the longer I'm on Dex and try alternative therapies in addition I will get better and better.

Here are my A's:
How long after your IC was diagnosed did you begin taking it? - I was dx'd with IC in Oct 2007 but was v sick since June 2007. Started taking Dex in July 2008.

How long before you felt like Dex had enough of an effect that you felt like you had a remission? - I still don't feel in remission, still of from work and disabled by pain a lot of the time, but I noticed decrease from what pain levels were within the first 2 weeks. Sometimes I feel reduced pain as soon as 30 - 40 mins after I take the dose.

What doses of Dex are each of you taking? - 10mg in the am then I go back to sleep, then 5mg in the early afternoon.

Has anyone tried Adderall? I don't want to b/c of the saccharate and aspartate salts that are part of its SR properties. - didn't try

I'm glad to hear everyone is still doing well! I took the studies into my urologist (I had gone to my gp to get Dex) and he was excited about it as something new to try with "recalcitrant" cases :smile tee.

Ciao for now

[camackin]

oh yeah i forgot to say. The dex has made me more "regular" meaning I don't have to take a laxative anymore which is great because I used to have lots of problems with retention and we all know that can be very uncomfortable with IC. not sure how some one with D from IBS would react to Dex....?

and also I used to have pain all over the body (shooting down legs and up back) and now it is more generalized usually to just the pelvis and lower back. sometimes if I eat something bad I will still feel that kidney/back pain and that's when I now an hour or two from then i will be in a bladder flare but even that back kidney/back pain is much reduced with the Dex.

[justice4j]

CA,
I had the D side effect from Dex. I was already in a really bad IC/IBS flare of about 15 months. I took Lomotil for a few weeks, then I could eat, then I was able to take iron pills for anemia.

Everything is improving - I'm like you- i't's not quite the instant miracle some have had, but I'm steadily improving and my pain levels are down around 1-3 and sometimes I THINK ZERO. I've only been on Dex since July 15th, so for a 15 month flare to be put down that far in a little over a month - I'm happy.

I think it will only continue to improve. My flare was very recalcitrant too, so I think with a bit more time and patience, we'll get even better. I'm convinced.

It's just taking a little longer for us b/c we maybe went undiagnosed longer and had worse flares???? You lucky woman - that your uro was excited to let you try. Mine won't touch it and neither will my gyn and both know I am a trustworthy compliant patient. Sp $$$$$$$ cash up front for a psychiatrist b/c that was the only way I could get an Rx. They seem to be the only docs in CA that aren't scared to death of Dex....Shame...

Take Care,

[ngazerro]

Glad to hear everyone is getting some relief!:woohoo::woohoo:

Mothergoose, I am getting over a bladder infection also. I have been on Cipro for 5 days now and it is getting better. I was glad it was an infection and not a flare because it was getting bad. The uro also gave me sample of utira-c for the pain and it helped. Hope you are feeling better!

camackin, I am sorry to hear that you are not getting enough relief from the pain. Hopefully soon you will find the right mix for you. Are you taking any antihistmines? Atarax has helped me alot. I don't take it all the time , but most people take it all the time. I will only take at night, when my bladder is acting up. hope you find what workks for you. I too always had the kidney pain. I still have it most days but it is not really painful, just adnoring. I always thought it was something they where missing. Hope you feel better.

Janet,

So glad to hear you are improving!:woohoo:

Lots of hugs
Nina

[camackin]

ya, i hope and have faith that i will improve on this drug even more so. i have been taking atarax now for about 2-3 weeks and it seems good. got to sort out my birth control/hormone issues - just saw my physio this morning (love her!) she said for sure the spotting i'm experience is due to drop in estrogen which will cause more pain. maybe once that is sorted i will feel much better. seeing my gp this afternoon to find out.

i'm very thankful to have found dr.'s that are caring and willing to try new things. I had to shop around a little, but the the medical system here is quite easy to navigate. you still definitely have to "be your own advocate", but i'm very lucky!

take care all!

[snowgirl]

I'm wondering too! Everyone got well and went out to party, left me here alone.

I will say that I'm flaring, the kind of flare I only get when I'm taking an antidepressant. I did have a cup of coffee yesterday, so I'm going to be good for a couple of days and HOPE it isn't the imipramine, doggone it.

I hope everyone IS out partying! I'm so glad for all of you, and if I can't take the imipramine, maybe the dex is my answer. Does it do anything for depression???

July

What happened? I thought the imipramine was working good for you? Vicky Dexamp won't help your depression but it should help your fatigue so who knows a circle it may help.

[justice4j]

Hi Everyone,

The psychi that finally was the doctor to Rx my Dex said that sometimes Dex is given to people who find their pain meds sedating them to the point their quality of life is worse b/c of this.

Also, the iron I'm taking for anemia has caused some mild constipation - what a switch from the IBS that was flaring. I notice when that pressure is relieved, I also instantly improve in terms of bladder symptoms.

Yesterday I taught my little kiddos piano and for the first time since starting Dex July 15th, I felt energetic enough to do a "spring cleaning" of most of the kitchen. I wasn't really doing anything strenuous - just wiping down surfaces. I didn't tackle the floor yet. Just as I was finishing, I started to have urethral burning that continued even after an instillation. This morning, it's much better, especially after going to the bathroom.

I have to believe that part of this was the cleaning products. My house is such a mess due to the 15 months flare and spending a lot of time sandwiched between heating pads. I'm motivated to get my house in order and of course bottom line, it has to be done. My SO will help today and I'm going to ask him to dust the wood furniture in the kitchen and maybe do the floors.

I also have lots of papers to sort through and shred. The everyday things like this just pile up when you're in pain a lot. But, now that I'm feeling better, I really can't stand it. I'm not a neat freak, but I also like at least a certain bit of order. Too much clutter tends to make anyone feel less calm, I think. I mean, we aren't in danger of the health dept. condemning things, but after 15 months of not being able to do much....there's much to be done.

Anyone have any recommendations for "non flaring" cleaning products? I was using a Windex antibacterial spray for cleaning the tile surfaces and refrigerator and Comet powder after to scrube the grout. PLEASE DON'T DELETE THE NAMES HERE - THIS IS NOT AN ADVERTISEMENT. IT IS A QUESTION POSED SEEKING INFORMATION AS TO WHETHER ANYONE HAS EXPERIENCED A FLARE AFTER USING THESE PRODUCTS. TIA>

I'm going to find anothe place to post this as well, b/c I think the topic has come up before and there was helpful feedback and suggestions.

I feel much better today and will take my first dose of Dex soon. I have meds I have to take an hour before eating. I take Dex 15 minutes before I eat breakfast.

Off to look for a place to post cleaning product flare.....

Take Care Everyone! Let's keep this board alive and let everyone know how Dex is working. This, I believe, is vital information for patients who have not responded well to other meds./methods. We need to make sure they have a source of information here on the Dex board.

Hugs,

[sailawaygrl]

Hi Janet,

I have started using the Clorox brand Greenworks. It cleans really well and doesn't have the strong odor that makes you have to run in and out of the room to breathe! There are a lot of "green" cleaning products out these days, I have seen some by Seventh Generation and quite a few others. I find mine at Target but I think the carry them in most stores these days.

Hope this helps.

Sandra

[Mothergoose]

Hi

This is also not an advertisement:

I clean with viniger and water for floors. I got an email a while back of all the uses of hydrogen peroxide ( but I must have deleted it), you mix this with water put in a spray bottle and it disinfects and cleans really well. It comes in different strenghts, I buy the strongest and dilute. This is the best window cleaner I have ever found, I use this solution and a mircofiber cloth.

Toliets I ussally use comet or other powder abrasive cleaners and a scrub brush.

Both of the top suggestions are cheap, and pretty much oderless, and clean really well.

[justice4j]

Hi Everyone,

Thanks for the great cleaning products suggestions. I mopped the floor last night and used vinegar, liquid dish soap and water in a spray bottle. It worked. I "detailed" the rest of the kitchen except for the hutch where I can't reach - SO is assigned to do that today.

I didn't flare from the cleaning products, so I know it was the Windex Antibacterial spray that did me in Monday night. But, the Windex for windows and mirrors doesn't bother me at all.

I did experience some PFD symptoms which I treated with topical Valium, and they're gone this morning.

Mothergoose, I had not heard of peroxide being used as a cleaning agent. I might try that on the grout. I also use abrasive powder cleaners on the toilet. We have very hard water here, so I usually put straight bleach into the toilet, run out of the room and let it sit there over night. It helps with those hard water stains.

I would say I am doing about 80-85% better with Dex and I think I would be doing even better if I/when I am able to get the PFD under better control. I'm taking Dex 15 mg when I wake up - not usually until 11AM or so. I wish I had a different circadian rhythm, but I don't and it makes it hard to get the next 10 mg. or 15 mg. "in" before it's too late and I do a 2-4 AM cleaning frenzy. I have to divide the 2nd halves of the dose and eat a little bit with it. I would love to be able to drop the instills and topical Valium, but I think in time when the PFD calms down I'll be able to:pray:

For me, b/c the PFD is still narrowing my stream and I get symptoms from doing simple physical activity, I just think the improvement will take a few more months. If I am doing something that doesn't involve moving around, it doesn't bother me.

I feel so much better that my kitchen is really clean. I also got the front bathroom done. I'm probably doing too much at once, but when I see what needs to be done....it really drives me :loco:

I need a new paper shredder before I can tackle my office area. The other one is half dead - BIG TIP DO NOT PUT WINDOWED ENVELOPS IN PAPER SHREDDERS.

I need to fill out the PAP paperwork for J &J so that hopefully my PAP will be renewed.:pray:

I feel like I'm making good improvement - hoping for more sooner than later but will exercise as much patience as I can ohmmmmmm.

Hugs,

[barbclay]

I have been on the dextro since early June. I still have IC pain, but i don't think it helps a s much as I thought. But, it has helped WONDERFULY with my fibro pain, I do not think I have had a migrane since, and I needed carpel tunnal surgery on my left hand (had it done on my right last year) and that pain is totally gone also. I have even lost 15lbs!!! I had been on lyrica. I feel this works much better, and I doesn't make me want to sleep all the time. I have tried so many things for my IC, that doesnt work, that it makes me want to beat my head against the wall. But, I have to look at all the positives that the dextro has make. :)

[camackin]

dear barbclay,

i'm glad to hear you have been helped by it! i didn't get those amazing miracle results either but it has really significantly helped, more than any other treatment i've tried. got to think positive! hopefully we can both build on our successes. :smile tee

[justice4j]

I also think that Dextrostat (my generic Rx) has helped me more than anything, along with Elmiron. I hope it will be effective enough to let me drop those instills soon.

I also think for me, it is more effective for IC pain than it is for PFD. PFD seems to be the worst problem right now. I can tell b/c the narrowed stream and burning sensations that indicate nerve pain. In time I think it will clear that up too. For now, I'm continuing topical Valium...I'd like to get rid of that too....

If I could tolerate Dextrostat being in my system 24/7 I think I would really see an even better improvement, but I wouldn't be able to sleep....

Maybe at some point in the future I can tolerate a sustained release Dextrostat.

[justice4j]

Hi,
I've raised my Dextrostat dose to 25 mg. and I can see more improvement. I am taking 15 mg. in the AM and 10 a few hours later. Today, I'm going to raise it to 30 mg. My doc's advice was "ramp up that dose and that will help kill the viruses." You may recall I had a viral panel run with 6 results of antibodies in the 99th% for my age group. I'm very happy with this doctor b/c he listens to my input and gives me the tools I need to improve.

I feel really good today and the increase in dose has not aggravated IBS. I think the Ferrous Sulfate 65 mg. is really countering that. I haven't had to take Lomotil or Imodium for a few weeks now. I know my Ferritin level is a lot better b/c all of my eyelashes have grown back in, and my hair isn't shedding like it was.

Today, I feel like I'm getting closer to the dose I need. What really amazes me is that this amphetamine does not cause me to feel "hyper" at all and I'm not a patient person in traffic, or if the computer is doing something I can't correct. I also think that the combination of much less pain has even helped me become calmer. Has it made me really easy going? Not as much as I wish I were. But there are also certain situations, like teaching kids piano, where I have a high level of patience and tolerance. I so do not want to have any child have a negative experience with music and I really do like all the kids I teach.

So, today, this is my very optomistic update. I'm so grateful this is working.:smile tee

[Mothergoose]

Hi I sent you an email today. I wan't to know the name of the pharamcy you said you used, for the med that might my son. I have lsot the pharmacyies name could you please email me or PM me the name again.

Thanks