First day on Dextroamphetamine-sulfate

[camackin]

Hi yall,
I thought I'd post my initial response to dextro and then note any progress as I go.

I got the rx yesterday afternoon and took 5mg at 3:00pm - wound up staying up until 5am - not smart! Will be taking mine in the morning only from now on.

My doctor initially gave me an rx for 20mg daily because that's what was used in the case study I brought to her, but when the pharmacist saw it she thought it was too much to start with. I also have an rx for a salbutamol inhaler for asthma which increases your heart rate (but I rarely ever take it! oh well). So the pharmacist called my doctor and suggested 10mg once daily to start. She gave me 2 weeks worth to start. I hope this is enough to notice a different as quickly as in the case study.:pray:

So today is my first real day on it. I woke up feeling okay, I have a little less stabbing pain in my bladder than I usually feel. I am still feeling that kind of dull, but also sharp at the same time, ache in my lower pelvis and lower back I usually have. Am a little less hungry than usual and also a little light headed, but that could also be due to the no wheat, sugar, dairy/elimination diet that I've been trying. I'm thinking I'm going to shelve that for now just in case. I've been really resting today and took a long bath so I'm not sure how much of that is effecting my pain level.

So basically, I haven't had an adverse reaction and it hasn't made me worse - - so that's good so far!! I don't see any major changes right now, but it's only midway through the first day so maybe I'm jumping the gun a little with this post. :smile tee

[camackin]

yeah, my dr wants to see if i get results in the first couple weeks and then if so and no bad side effects then she'll write an rx for the rest. I got 5mg tables. the pharmacist told me to take 10mg once daily in the am. I'm wondering if I should take 5 in the am and 5 at noon as well. maybe it's easier on the body to distribute it?

The drugs definitely made me feel weird today though. Kind of like I've been sitting in a hot tub for way to long. Like your heart rate is up a little and you feel kind of like you need some fresh air. I've also had a bit of nausea but i'm hoping that will resolve. maybe 5 and 5 is the way to go.

[justice4j]

Hi,

I am hoping that I will get to try the 5 AM 5 12n routine that NGazerro's Dr. Rxs her.

I'm the queen of medication sensitivity, so that method appeals to me. That seems more comfortable for me, but others have done well on the SR too...

Like everyone says, IC patients are so individual that each treatment has to almost be custom for each one....

Makes research and treatment difficult for both the Dr.s and patients.

[Wolfe]

Could someone please post a link to "the study"? Or are we talking about the "Beyond the Abstract" article from UroToday? I gave that to my psych, but I want to go in armed with everything I can get. NOW I can say, "Check out the dex board!" WooHoo!
:woohoo:

[camackin]

Here are the 2 abstracts that seem the most relevant to me. If anyone has any other articles can they post them too?
**********************************************************
Abstract #1 from The Clinical and Experimental Obstetrics & Gynecology Journal Issue 32. here is a link to the abstract online. http://www.ncbi.nlm.nih.gov/pubmed/16440825

(or you can search using part of the article name on google if the link doesn't work = "A novel highly effective treatment of interstitial cystitis causing chronic pelvic pain of bladder origin: case reports")

*********************************************************
Abstract #2 from The Medical Hypothesis Journal Issue 70
http://www.sciencedirect.com/science...0af8b97d48e0d4

*********************************************************

[camackin]

oops here is the link again to article number 2
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4PJDD8C-1&_user=10&_coverDate=12%2F31%2F2008&_alid=765231743&_rdoc=13&_fmt=high&_orig=search&_cdi=6950&_sort=d&_docanchor=&view=c&_ct=211&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=3ac536933f920d9778e642b124ad4c2a

if that doesn't work you can go to www.sciencedirect.com and search J.H. Check under the author search field. the article name is
A disorder of sympathomimetic amines leading to increased vascular permeability may be the etiologic factor in various treatment refractory health problems in women

[camackin]

the "beyond the abstract" article that refers to the
"A disorder of sympathomimetic amines leading to increased vascular permeability may be the etiologic factor in various treatment refractory health problems in women" article on sciencedirect.com so they are basically the same thing.

I printed the ones that list the purpose, method, results, etc because it is reported as a case study instead of an interest article. I don't know it seemed more official.

here is another link the "beyond the abstract" article on www.urotoday.com
http://www.urotoday.com/49/browse_categories/painful_bladder_syndrome/sympathomimetic_amine_therapy_may_improve_refractory_gastroparesis_sim ilar_to_its_effect_on_chronic_pelvic_paincase_report__abstract.html
just in case

[ddscrazy]

Hi!Do you have the edema they speak of in the article?I have been having swelling of my hands and ankles for about 3 weeks and the Dr.cant explain it?Thought is was from the Atarax or Zyrtec stopped both and just taking Benadryl at night the tingling is better but still have the swollen hands and ankles,esp.at night.

The dextro sounds just to good to be true!!wish i could get my Dr. to atleast read the articles.His nurse practioner even goes to seminars on IC in Los Angeles and is coming back with new info for him,somaybe just a matter of time!!Would give anyhting not tohave this IC belly and swelling in my inner thighs and hands,ankles.

Start P.T for pfd and IC next week hope that helps and the instills get less painful as I have more done.

Has anyone had the Atarax make the irritiable and cranky?

Thanks again for all the input.

DD

[ngazerro]

camackin,

Taking the 5mg when I get up and another 5mg has helped with any weird feelings. I have been on it for over 7 months and the 5mg at different times has helped me. I hate meds so the least the better for me. Something to keep in mind also: after a while some meds stop working and need to be increased, so be able to take the least amount with relief will help with building a tolerence. My doctor and talked and if I ever need to go over 20mg a day , then I will stop the dextro for a while.

[camackin]

not sure if I have edema, i haven't done the water load test they refer to. but I thought i remembered reading something saying some of his patients didn't have the edema but responded anyway. I think ngazerro said she didn't fail the water load test but responded anyway (I think?). I know i have a big swollen painful belly though! I didn't take Atarax, but Reactine instead because it's very similar and doesn't cause as much drowsiness, but it doesn't make me irritable just foggy-headed.

I don't know if it's in my head or not, but I THINK I have less of an IC belly today and yesterday! And this is gross, but the bowel movement I just had was way less painful than usual.....maybe it's working???

I have to wait and see a couple more days perhaps. I still had to take 15mg of oxycodone yesterday to get by so maybe it'll be less today.

[camackin]

hi ngazerro,

okay now i don't feel like 5mg and 5mg isn't enough if that's what you started on.

I hope you're feeling better. still in a flare?

[ngazerro]

I actually started at 5mg in morning and it better but would hurt by the end of the day. Then a week later we went to the 5mg when I woke up and 5mg around 12:00. It worked really well for me.

Thanks, My flare is letting up!:) I wanted to rip my bladder out earlier!!! Much better now..

[camackin]

i feel pretty good today, like one of those good days that comes along once every few months. still sore and the occasional stab of pain, but i haven't needed to take any oxycodone today !!!!

yesterday i cleaned the house up because i had a lot of energy and when i do that much usually i pay for it later big time, but i my pain didn't get any worse and today i still have energy.

i'm hoping this is because of the dex and not just a random good day. Guess i'll find out in a couple days if this continues. it's sunny here in vancouver so i'm going to to take my brother's dog to the park!

so far so good :smile tee

[camackin]

well it's almost been a week, and while i don't have 100% resolution of symptoms like i was hoping for (a miracle basically), i do have about 50% resolutions. i don't wake up feeling like a just ran a 16 hour marathon anymore - i can actually get right out of bed! the pain is isolated now to my lower pelvis/bladder instead of all over. i haven't been taking my Elavil/amitriptyline since i started dex and usually that's what i notice if i miss a few days of it - the dreaded all-over pain.

so all in all it's pretty good so far. i'm going to ask my doctor if she will up the rx to 15mg a day and see if that will yield more improvements. maybe try going up to 20mg and stop if no more improvements at that point. i'll wait one more week on the 10 to see if i get even better on that dose though. i still don't feel like i'm at the level where i could do normal things like work and i've still had to take about 5mg a day of oxycodone. maybe it's working but just not as fast as i want and next week will be better.

[camackin]

ps, my ic belly is waaay less swollen. it's looking close to normal. of course i haven't exercising in literally over a year now so it's still mushy. but not swollen!

[justice4j]

Has anyone had the Atarax make the irritiable and cranky?

Ca,
In the beginning, but once I became more used to it, that left. I was very sensitive to the sedative effects. Once that wore off after months, Atarax was fine. It also made me feel a little depressed before I became accustomed to it.

[Wolfe]

I am so happy for you! 50% is a big improvement in such a short time. I know we hope a pill is going to make us feel "normal" overnight, but even when I have one of those "good" days, I am so relieved and grateful.

I'll bet you will continue to improve without even increasing the dose. Please keep us informed. :woohoo:

[camackin]

hello

well it's been over a week now. i've had a couple bad days (but not as bad as my "bad days" were before) - i think i ate something bad not quiet sure what it was. And i've had a few really good days. i still feel disabled by the pain though...i was kinda hoping that would be fixed. :rolleyes:

i could still improve and i might ask my doctor to up the dose.

[camackin]

Has anyone had the Atarax make the irritiable and cranky?

Ca,
In the beginning, but once I became more used to it, that left. I was very sensitive to the sedative effects. Once that wore off after months, Atarax was fine. It also made me feel a little depressed before I became accustomed to it.

i don't know i'm not taking atarax, but reactine. i was thinking of switching tho because i think maybe atarax is a stronger antihistamine?

[justice4j]

Hi,

Talk to your doctor about Atarax or Vistaril. There are generics for both.

My allergist also said I could take Claritin during the day and still safely take Vistaril 50 mg. at bedtime. Ask your doctors about all of these options and then choose together what your best treatment plan is.

That's one of the things I love about being Dr. Parsons' patient. He really listens to his patient's input. When he lectures, he always stresses how much IC patients have taught him and that listening to patients is of paramount importance.

I do not like to be treated by doctors who don't like to explore suggestions from their patients. All of my docs work WITH me to get my care to the best level it can be.

I feel very fortunate to have found each of them.

[camackin]

when i go into report back on the dex i'll ask her about atarax.

[camackin]

It's been almost a month now on Dexedrine. The first two weeks I was on 10 mg (5 in the am and 5 in the pm) with reactine once daily, the next 2 weeks on 15 mg (10 in the am and 5 in the pm) with reactine. No other meds since then except birth control continuous for 3 months at a time and some oxycodone for pain. I haven't noticed a huge different between the 10 and 15mg dose so I'm sticking with 15 for the next month.

Overall, I have less pain and take less pain killers and have more energy. I've had about an average of one day a week of very low pain, which hasn't happened in over a year prior. Most days are medium and my bad days aren't as bad now. Still getting up a couple times a night to pee, but not waking up with pain anymore (!!!) So over all really good, but just not enough to resume my normal life. It's still exhausting and painful just to walk to the grocery store...BUT there were times before where I was on lots of oxycodone and wanted to drop my bags halfway home bc I didn't think I could make it cause of the pain (5 blocks). Now I can walk there without pain killers and carry a light load home with very little increased pain. So there is definite improvement!

I just got my prescription for Atarax (never tried it before bc my uro suggested reactine instead). Am starting on 25mg at night so hopefully that works and doesn't make me too out of it. I'm hoping the combination of the Dex and Atarax will work even better. :)

I'm so happy for those of you who have seen such dramatic improvements - not only do you get (much MUCH deserved) relief, but that means there is hope for other ICrs to recover. I hope this'll do it for me too!

[ngazerro]

That is great! Hope you get better everyday!!:woohoo:

[wolfaleena]

Hi there: camacken... What is the drug that is helping you called?
I am very happy that you have had some improvement.
I don't think i have heard of this treatment... thanks

[snowgirl]

Hi,

Talk to your doctor about Atarax or Vistaril. There are generics for both.

My allergist also said I could take Claritin during the day and still safely take Vistaril 50 mg. at bedtime. Ask your doctors about all of these options and then choose together what your best treatment plan is.

That's one of the things I love about being Dr. Parsons' patient. He really listens to his patient's input. When he lectures, he always stresses how much IC patients have taught him and that listening to patients is of paramount importance.

I do not like to be treated by doctors who don't like to explore suggestions from their patients. All of my docs work WITH me to get my care to the best level it can be.

I feel very fortunate to have found each of them.

Yes you are fortunate and blessed to have icon Dr. Parsons. Is it true that Dr. Parsons doesn't believe in narcotics for his IC patients. He lectures to try to get IC pt's off narcotics - something to do with up regulation do you know if so why he doesn't prescribe narcotics? What is his theory on this. I know he is tops in the IC field. MY friend went to a lecture and he told NP he doesn't use narcotics for IC. The less narcotic the better. PM me Vicky

[camackin]

Hi Wolfaleena,

The new drug that is giving me some relief is dextroamphetamine sulfate - one of the brand names in Dexedrine. There is a lot of information about it posted under the forum topic Dextroamphetamine Sulfate.

C

[justice4j]

Vicky,
Dr. Parsons doesn't Rx narcotics. I think, but I'm not completely sure, that he sends people to pain management. For a few years, I was on Vicodin. My bladder pain went into remission and I told him I was taking Vicodin primarily for what I thought was referred back pain, but now think was the beginning of PFD.

He said, "Stop the Vicodin b/c the pain nerves won't 'dry up' until you do. You may have a couple of weeks where the pain is worse, but if you stop the Vicodin, your back pain will improve." I stopped it and at the time, he was right. I suppose what he said translates into the "upregulation" you mentioned. Sounds like it.

I do not take any narcotics b/c I am on Low Dose Naltrexone and Dex is helping. But, there are a few days when I wish I could take Vicodin - I still keep it around. If I were to get into really bad pain, I could go off LDN and take Vicodin, but so far I've managed w/o it. Vicodin makes me very irritable, so I would rather not take it.

I slept 12 hours last night. I was interrupted by a phone call at the five hour mark (my SO and I were up really late talking) , went to the restroom and back to sleep for another 8 hours. Wooops....I guess that's a total of 13 hours.

My office area was such a mess with papers that needed to be shredded and thrown out. It took me hours yesterday to shred some of it b/f the shredder DIED. It had been "coding" for a while, but that did it in. Tomorrow I will buy a new shredder and hopefully finish the shredding in a few sessions. The shredders get hot and stop periodically.....

It makes me feel better to know that I am getting my house back together. But, the other day, scrubbing the bathtube - which no one ever uses but needed cleaning- and using Windex Antibacterial spray threw me into a flare. So, As MG suggested, I am using a little dish soap, vinegar and water and that worked really well on the tile floor. The bathtub thing got PFD roaring for a day or so....

I'm going to sleep....