Whats the difference?And what are you taking?

[funinsun18]

I called the pharmacy and they say there are a few different kinds of Dextroamphetamine.One with Sulfate? (I think that's what you all are taking but not sure)Aderall?I don't think that's what I want and Dexedrine?I don't know what that one is.
Does anyone have more insight on the difference.I guess more on the Sulfate and Dexedrine.

Thank you
Hugs

[funinsun18]

Sorry I have another question.I'm just so excited.I have a good feeling about this and I was so close to giving into this stupid IC.Has Dextro given anyone more energy?I sure do need some of that.I know it makes it harder to sleep if you take it too late in the day.But that's not necessary energy.I also have insomnia.

Thanks again

[funinsun18]

Ok I've been researching this for two days now and now I know the difference (I think)between Dexedrine is the brand name of Dextroamphetamine is generic name.Aderall has other ingredients that our bladders don't like.Am I right on all this?
Thanks

[nottoc4]

I don't know so I'll be looking forward to someone posting that does know. Jo

[InolaC]

funinsun, from what i can recall this is a very simple but fairly accurate difference between the types. I will do some research and post the findings


Ok I've been researching this for two days now and now I know the difference (I think)between Dexedrine is the brand name of Dextroamphetamine is generic name.Aderall has other ingredients that our bladders don't like.Am I right on all this?
Thanks

[funinsun18]

My Dr couldn't give me Dextro cause it's not FDA approved for IC.So I'll have to wait till I see the Uro.I did find that you can take a extended release Dextro.Has anyone tried these?
I also had to stop taking Topomax for migraines cause my hands and feet were going numb every day.I hope that's what the problem is anyway.Hopefully the migraines won't be too bad while I wait for the Topomax to get out of my system and get a new med in.

Take care all
Hugs

[samandmichelle]

My urologist is afraid to prescribe this, but did just because she knew I didn't want instillations. It is not FDA approved for this and because it is class 2 most doctors are too afraid they will go to jail or something goofy. As far as I understand it the only difference between Adderall and Dex is that Dex is straight dextroamphetamine sulfate while Adderall is only 1/4 dextroamphetamine sulfate (Adderall is a mix of 4 amphetamines). The other 4 amphetamines don't appear to provide any help for IC symptoms. No one seems to fully understand why the Dex works, but they think it assists in reducing the improper permeability of the bladder's GAG layer. I hope this information helps...

[funinsun18]

Your right Dr are afraid cause they can lose their license.I heard of the new instills I will try if this doesn't work.I would prefer not too.That makes alot of sence with Aderall only being 1/4 dextroamphetamine sulfate.It sure make me want to try it more.If it will help the GAG layer of the bladder.

Thank you so much for the info
Hugs

[justice4j]

Hi Everyone,

After some serious head banging for about 4 weeks, I found a PSYCHIATRIST willing to Rx Dex for me. For any of you having difficulties obtaining an RX for Dex, that is where I would try after being turned down by both my uro, urogyn and gyn.

I have been patients of both my gyn and uro for over 10 years. My gyn had no qualms about Rxing 180 Valium 10 mg. for PFD when I faxed her Dr. Brookoff's Q & A re IC/CPP/PFD. So, it obviously wasn't a trust issue as far as the Dex goes. TWO doctors' offices contacted her to try to persuade her to Rx it for me, based on their own successes with their patients. No dice.

My gyn contacted the local pain management guy, and when he said HE DIDN'T Rx Dex for pelvic pain, that sealed my fate of not getting it with an inexpensive co-pay to her. BTW, when my anger at this is at a more manageable level, that pain management doc is going to receive a letter from me suggesting he do more research, and update himself to cutting edge treatments before condemning a drug that has had fantastic success in an FDA study in Louisville, KY. I will also send him the 2 small studies and accounts of the successes on this board with Dex., including my own. I hope the FDA study from Hubbard Clinic in KY is published ASAP. That will help with getting Dr.'s to Rx Dex for IC/CPP/PFD b/c it will justify their "off label" use of Dex. Off label is a term that means that a drug is being RXd for something other than what it was originally tested/used for.

Instead of paying a $28.50 co-pay to the gyn (partly b/c of this so called pain management guy), it will have cost me over $1,500.00 to get an RX for a $10 co-pay drug which has made a HUGE IMPROVEMENT in my level of pain, urgency and frequency. I think that my pain would all be gone if I could AFFORD the PT for PFD - also cash up front and $80 a pop with bi-weekly appointments suggested. I went twice.

I'll first address the docs being scared of Dex. According to my pharmacist, in the US whenever there is an Rx for Dex, the Drug Enforcement Administration is immediately notified via computer.

Psychiatrists are very accustomed to Rxing Dex, Adderall etc for ADD. My theory is that when a psychi Rxs Dex, red flags aren't raised at the DEA the way they probably are if your doc is a gyn, urogyn, uro, etc. So, some of their apprehension is justified. I JUST WISH THAT SOME OF THEM HAD THE CHUTZPAH AND COMPASSION TO RX DEX FOR PATIENTS WHEN IT IS APPRORPIATE LIKE IN MICHELLE'S CASE. MICHELLE'S PHYSICIAN IS ONE OF THE HIGHEST CALLING - SHE WAS DETERMINED TO HELP MICHELLE AND DID SO BY RXING DEX FOR HER. KUDOS TO HER DOCTOR FOR HER COMPASSIONATE, "OUTSIDE THE BOX" THINKING/RXING.

I suffered pain at a level of 7-12 for 4 additional weeks b/c I couldn't find a doctor willing to Rx this for me. I can't help but be very angry about that. I'm a former ER and OR RN (17 years experience total) and I know how to work the system, yet I had UNNECESSARY ADDITIONAL SUFFERING!

The psychi I did get the RX from is kind, caring, and we really "clicked" my second visit. I did something kind of unusual at my first visit which was intended to break the ice, and it did - I handed him the CD my bassist (and wonderful significant other) and I recorded (I play keys), then I said, "You will not ever really know me until you listen to me play." He thanked me for the CD and said how much he enjoyed listening to music of different genres - ours is jazz and classical was playing in the office.

At my next visit, before we were even fully seated, he said how much he enjoyed the CD, how relaxing it was to listen to and complimented our talents. He seemed impressed that we/I had been able to accomplish recording a CD during a time when I was in pain - that's why it took 8 months to finish.

Okay, my venting etc. is over.....

Now, I'll address what I know about ADDERALL, in addition to what has already been said, ADDERALL contains two salts -SACCHARATE and ASPARTATE- both sound way too close to saccharin and aspartame - death to my bladder.


My b/f RN friend found an article that said ASPARTATE is CONVERTED TO ASPARTAME IN THE DIGESTIVE SYSTEM! Even an after coffee mint from Starbucks gave me a 12 hour flare BECAUSE IT HAD ASPARTAME IN IT. It had to be a minute amount - the mint is as small as a saccharin tablet.
It took me a few days to even figure out that the Starbucks after coffee mints - the ones in the small tins- was the culprit. I didn't think to read the back of the tin. So, here's another tip - READ THE BACK OF ANY AFTER COFFEE MINT TINS FROM STARBUCKS. I don't know if they all have aspartame, but these did.

My understanding is that the Saccharate and Aspartate in Adderall are what contribute - in addition to a beads system - http://en.wikipedia.org/wiki/Adderall

gives Adderall its extended relsease properties. Michelle is right - Adderall is not JUST DEXTROAMPHETMINE SULFATE. Adderall also containes Dextroamphetamine saccharate.

Dextroamphetamine sulfate is called a sympathomimetic amine. Again, Michelle is absolutely correct. The limited studies done by Dr. Jerome Check in NJ theorize that Dex corrects the faulty permeability (leaking of the GAG layer) in the bladder.

The problem with getting more studies done using Dex for IC is that it is off patent. Therefore, the big pharmas are not interested in funding its research - there aren't any profits for them b/c the patent has expired so they aren't going to give up research money out of compassion. Please excuse my sarcasm - but I happen to think it is well placed. I have had to pay over $40,000.00 in the last 10 years for drug co-pays -yes I have insurance. Mostly from the cost of Elmiron spiraling to a 1000% increase in co-pay over about 3 years -yes I meant 3 zeros- I incurrred debt that will be close to impossible to dig out from under. Thankfully, J&J approved me for PAP in Feb. But, it took 4 months before my appeal letter (after initially being turned down b/c I had Rx coverage) to reach the "right desk." Now, I have to apply all over again b/c my initial application was in 9/2007. I have that to do today and believe me, it will go directly to the person who finally called me with the good news that they found a way to approve me within their guidelines.

However, I wrote Hospira, the only manufacturer of Lidocaine 4%, with an appeal for help and was turned down - "we don't have such PAP programs." I'm hoping in time that Dex will make instillations unnecessary eventually. The Lido alone costs $100/month.

So, in closing I guess I'd have to say if you as an IC patient feel that Dex will help you, look to psychiatrists for help, look to Uni Psych Clinics for a lower cost and don't stop trying no matter how many times you hear "No, I'm not comfortable Rxing Dex for IC."

Good luck to each of you in your quest to try this cutting edge treatment.

Love, and Symptom Free Days to All and My There Be a Cure in Our Lifetimes,

Janet

[nottoc4]

Thanks for the onfo and post.....so far Elmiron and the IC diet are doing the job for me,but as I have read here,the situation could change at any time. Nice to know of other drugs that could help.Jo

[funinsun18]

Thank you for all the info.I'm sorry you had to suffer before you could get Dex
My Dr would of Rx Dex if it was a couple of years ago.She is very compassionant.But she Rx to the wrong person and now she is just getting of probation through the clinic.I had to sign a paper and bring in Lortabs every visit so she could count them and take a ua.That was all fine with me cause she is a great Dr and I've been with her for 16 yrs.Now she whole hardedly trust me but she still can't just Rx anything I want to try.

Anyway I wanted to ask you How do you know about the FDA study in Louisville,Ky?Is there a link I can go to.I've been to the FDA website a few times and can't find anything that would help me.

Again thank you for the info
Hugs
Fun18

[justice4j]

Hubbard Clinic
www.hubbardclinic.com

3920 Dupont Sq S # C
St Matthews, KY 40207
(502) 893-3510

Hi,
As far as I know, they have not published the study yet. Try PMing NGazerro. She's one of their patients. She may know when the study is coming out. I hope very soon.

Hugs,

[funinsun18]

I went to the website.Do you know if there is a way to find out if there are more clinics like that one.It would be nice if there was one in every state.I know I would be there.I'll Pm NGazerro too.

Thank you again for the info.
Hugs

[camackin]

If anyone finds that FDA study's published results it would be wonderful if you can post it! I'll on the look out for that too