cellcept

[Rose Fish]

I was involved with the cellcept trial and received the placebo. I was wondering if anyone has been able to obtain the drug outside of the clinical trial that is presently going on. I am desperately searching for a doctor that is willing to prescribe the meds. Any suggestions would be so much appreciated.

Thanks again, Rose fish

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I found this to be an extremely interesting study. Transplant surgeons deal with cellcept a lot, so you might call there offices. It would help to find a major transplant center from UNOS which is online.

I am just curious did you ask the study head if the doctor conducting the study would be offering this sort of treatment?

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[PurpleKitty]

My rheumatologist gave me Cellcept last summer for lupus like symptoms and to decrease my over active immune system. I only took it for a month because I started having severe breathing problems and asthma, found out later it was not related to the Cellcept. I've not gone back on it but may have to because my ANA and SED rate are climbing again. I didn't know it would help the IC, killing two birds with one stone I guess. It does have a lot of side effects though, kinda scary, liver, kidney, blood, fatigue was really bad too.

[braykittie]

I am just about done with the CellCept med trial (just 3 more visits). Dr Payne has stated if I want to continue on the drug my doctor will write the perscription and monitor my labs, which at present are CBC & Liver function. I definitely will continue, but will cut down to 1gm. So if you are looking for a script try your regular doctor. My doctor said she will need guidelines, but is willing to do the perscribing. I think Dr. Payne will not be perscribing this drug as I do not want to make the 4.5 hr drive (one way) just for a blood test.
Good luck & take care.
braykittie

[kadi]

Braykittie,
Did the CellCept help? How much?
Thanks!

[braykittie]

Hi All
When I initially started on the trial I had to have an in office cystoscopy, which showed three ulcers-which weren't there one year previously when I had a Hydro. No wonder I wan in so much pain-but Dr Payne said this might keep me out of the study and I said "NO WAY" would I take no for an answer. He then did a cytology to rule out CA-which of course it was negative. But then he wanted to be really sure and we did another cysto with biopsy-during this procedure he could only find one acitve ulcer and maybe where the others might have been. At this time I was really feeling better-maybe because only one ulcer-maybe because I was taking pyridium every day-who knows, but I was still going to go on with the med trial. again the biopsy was negative and I started the trial.
I went to Stanford every week for tree weeks taking one gram (1gm) every day-500mg every morning and 500 mg every night. I beleived at this time I was on a placebo because there were "NO" side effects and I still felt good.
Then they bumped up my dose to 2grams (2gms) a day-1gm each morning and 1gm each night. Oh was I sick after the first dose and it lasted for four days-but I kept on taking the medication. I felt like I had flu-a very bad flu-I was in bed the entire day when I felt the worst. When I went back to Stanford after starting the 2gm dose Anna (case worker) asked did I think I was on the drug or placebo I said Drug with a doubt. I still have some days where I feel flu like and some upset stomach, Headachy -which I sledom have headachs. When I was bumped up to 2gms and the side effects kicked in it was really hard to make myself take the med-but I was not about to stop because I felt so wonderful IC wise.
I have three more appointments at Stanford and then I am through, but will work with my doctor here. I intend to drop down to 1gm and maybe if possible to 500mg when on my own. I do take to heart a comment Dr. Payne made "if a med does not seem to be working drop it, and if a med is working take the lowest dose that works". At this point I feel like I have never had IC, other then frequency-which is less then when I started. I did a void diary and counted 43 voids in a 24 hour period-now I would say I have cut at least 1/3 out. On one of our trips to Stanford (a 4.5 hr drive) we did not stop once and when we got to there I felt just like most people must feel a need to void, but not the bone numbing pain that goes along with IC. I continue to take pyridium more often then not, and I have had a low grade yeast infection-which resolved easily.
My labs have been good-so all is well for now and I hope for the rest of my life. I do want to repeat the cystoscopy and see where the ulcers are.
Rose you wrote that you are taking 2mg? I think you have the doseage wrong or are you taking 2gms a day?
I am happy to share my experience with fellow IC'ers- this site has been my lifeline from the start.
Take care one and all!
braykittie

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I want to thank you women who participated in this clinical trial. You have made a contribution to the future of IC treatment. Immnosuppression medications are not a walk in the park and you went forward with the trial anyway. It was probably diappointing to those of you who spent all the time and effort participating without any reward. Please give yourselves a big pat on the back!

Does anyone know when the medical paper will be released? I know it can take over a year sometimes to put all the date together and publish it.

With appreciation, :bow:
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[calypsogirl]

Hi:

I am entering week three of cell cept. don't know the dosage, notice fatigue some mild relief from pain. my doc has run out of options. he said he will prescribe it whether i get the placebo or not depending on labs. cross your fingers.

[Rose Fish]

Hi Calypsogirl:

Have you notice any change in your frequency with the cellcept?
I have not notice any change which is my main complaint.

Thanks, Rose Fish

[GriffsMommy]

When I went to see an IC specialist at the U of MD medical center on Monday he offered me the cellcept trial. It looked intersting but I had not felt that I had tried everything else yet and I would have to go to Baltimore much more often than is possible with me working full time. I do appreciate the women who are going through with the trial though, I'm sure the info will be very useful in the future.

[laura dove]

christine,

we did see the same doc. on mon. Dr.Chai will prescribe the
drug outside of the trial. He offered it to me on mon.,even though
i decided not to do the trial because i am too sick right now. he said
it was not working for the two other patients he has prescribed it to
outside of the trial. the study is still young,so i will keep my
fingers crossed for those who try. he seems very pessimistic about
this treatment,and most others. i appreciate his honesty, but we just need
some hope in the attitude. i pray my experience was isolated.

[stacym]

Rose Fish...how long have you been on cellcept?

Stacy

[GriffsMommy]

Laura I PMed you.

[braykittie]

Hi All
I had my last appointment for the CellCept trial and was given a script for medication. It seems I am the first to finish and doing soooooooo well he said there isn't any documentation about long term use of CellCept. So He gave me a prescription and I will see him or his Nurse Practitioner every month for 6months-if all is still well he will turn me over to my local doc.
I am doing fantastic on this drug, and he said that since I am doing so well I will probably not be able to go off.
I just want to decrease the dose back to 1gm per day instead of 2. Dr. Payne said I can alternate 2gms one week and 1gm the next and if there is no difference and I continue to feel good I can decrease to 1gm.
At the end of the trial I had to repeat questionaire I did at the beginning.
All were much better this time, my starting voiding diary was 43 voids in 24 hrs, this time down to 24. My urine output has increased to 150cc, but Dr. wants me to work on increasing my bladder capacity to 300 per void. I now pee with a loud stream instead of that pitiful spitty sound.
My pain that kept me from doing so many things and was stealing my life has been replaced with a mild to moderate discomfort if I eat or drink too much of a no-no food, and after sex somethimes.
I am enjoying my life again. There is life after IC.
The CellCept coordinator said they need a total of 20 participants, they now have 7. I was the third-the first one couldn't dolerate the medication, the second dropped out, and as I said I am the first to complete the trial.
I wish all of you will find a medication or procedure that makes you feel as good as I do. It's out there. Take care.
Braykittie

[calypsogirl]

Hi :

I am glad you were able to continue through the study. I was bumped out at week 6. I was feeling some difference,but because I am of childbearing age and the new classification of the drug to D. I was bumped out. No exclusions to this rule. So anyone considering this must be sterile pretty much. I was very upset. I was told nothing will probably change. I have a feeling my dr. won't offer it to my as well due to my "fertile state". I guess I was glad to contribute something, but I won't participate in a study again it was physically and mentally taxing (just started a new job, and waking up at 5:15 a.m. to get to the study site than work till 7:00 p.m. Back to pain pills and high doses of valium and flomax).

[braykittie]

Hi
Sorry it has been so long to respond to your post. I am sorry you couldn't finish the study and hope you find something else that will help you.
I got a call from one of the trials case workers 11/15-she stated that the CellCept durg trial was on hold for now until some new/old information could be evaluated. As you stated CellCept is now a category D drug- no one in child bearing age can take it, but there seems to be some concern about the drug causing Lymphoma (0.01 something chance)which has always be a potential side affect. Debbie said she was calling all CellCept participants to inform them the trail is on hold (not stopped) All participants taking the drug were to stop taking the medication and return what medication they had until more information could be gathered and protocals rewritten. She called me to update me, but as I am through with the trial and now on perscription my medication can't be withdrawn. Whew! I told Debbie I would not stop taking the drug- I was not going back to a life that felt like I was already dead and just waiting for burial! I will take my chances (living death with IC or slim chance of Lymphoma). Hmmm not a hard choice to make.
I feel sorry for the study people who are having relief and have to stop.
Take care one and all-
braykittie

[calypsogirl]

Hi:

Well, I got some good news, my doctor is going to prescribe the cell cept for me out of his private office. I have been a patient for about 7 years so he knows I will be compliant with all the applicable blood tests and visits. He knows my medical history and a couple other items he found out during the cell cept study. I guess he doesn't agree with the way the study is going, but agrees with the drug is worth it. So things have changed for the better. THe only bad thing is I will hav eto pay outright for the drug and than get reimbursed by my insurance company. Will find out the scoop next week. Yes it did help for the short time I was on it. good luck. I hear the hold is expected to be short. They are still considering me int he study even though I am not on drug, and have to report back to the final week. The coordinator pulled some strings so I didn't have to report back the other weeks it was about100 miles round trip.

[ABliske]

How long do you suppose it will be before Cellcept becomes mainstream for IC?

[mom_in_ma]

Calypsogirl, that's good news for you. I know you were worried. How did you know the drug was working for you?

[calypsogirl]

I think it will be a while before it becomes mainstream. There are a lot of risks associated with it. It took me a couple of months to decide to participate in the study, but I am glad I did.

I didn't notice a noticable change till the mid to the end of the second week on 1 gram. The study goes up to two grams. I am going to try and see if he will prescribe one gram every other day due to the cost, and work up to one gram a day ( been laid off, money is very tight). He may not. Will find out Monday. It even helped whatever is going on in my shoulder, which they think is nerve impingement, arthitis Good luck to any one who tries it and be sure to read all the risks especially if you are sexually active or plan on having children, or there is chance you could get pregnant. This drug has lead to fetal abnomailities (heart malformations, cleft palate)

take care..m

[ABliske]

Anyone taken it who has had an abnormal pap in the past? That's why I couldn't do the trial. (Now, there are other reasons - the baby and a possibliity of having more! ) They said they were thinking about letting people do it who'd had abnormal paps in the past, but who'd tested normal for a few years.
How much does it cost? I just want to know my options for the future! Thank you and good luck!!!

[calypsogirl]

There are not costs, but you are not reimbursed for participating, lots of studies do. The cost for a month's supply is 416.00 is the cheapest I found. IF you are prescribed. I wanted till stay in the study too make sure it really worked. I have insurance but will have to pay out first and get reimbursed, one month = 1 gram /day. I am going to see if he will do 1/2 gram a day.

You have to use two reliable methods of BC, since the drug has been linked to birth defects

As for the pap smear thing, I wasn't told if you had an abnormal pap you were excluded. I am a DES daughter, and always have missing endocervical component in my paps, due to the DES, its not abnormal, just incomplete. So I am surprised that is exclusion criteria. I can find out I see the coordinator one last time this month. She seems to know more of some of the detailed specifics than the doctor.

Right now I am on valium, oxy, flomax and I am able to function somewhat, but have a shoulder issue which is complicating my pain issues right now.

[braykittie]

When I was doing the qualification phase of the study questions related to Cancer history were at the top of their list. I had to have a pap within the last year and it had to be negative. If I had any history of questionable paps or Cancer I wouldn't have been able to go on. Since the drug is a immune depressant any history of cancer would disqualify you. You also can't be taking Zantac or any of the other drugs in this category on a consistant basis. As for the cost I have heard that WallMart has a $3.00 & a $4.00 cost for any drug prescription.
Dr. Payne said the study has been restarted, but any participants that were in mid stream could not start again.

[GriffsMommy]

Bray,
Walmart has generics that are $4 a month and it's only some of them. I'm sure if the drug costs $400 a month without insurance there is no chance it is on the Walmart list. You can go to walmart's wesite and under pharmacy you can view all the drugs that are part of their $4 generics.

[stacym]

Hey BrayKittie...are you still doing well on the cellcept? Did you go down to 1 instead of 2 MG? Thanks Stacy

[calypsogirl]

Hi:

Well, I am glad, well not glad to hear that was true about the midstream people. I was one of the mid-streamers. I thought it was because of myself and the study coordinator. We had a mild disagreement about flomax samples early on. Mr. Dr. agreed to provide them during the course of the study since there was not any reimbursement. The coordinator got all ansy when I asked for some once. So I have never asked the dr. nor the study coordinator for any samples since then. Also, she relayed every tiny itsy bitsey thing I said to him even if it was not medically related.

[braykittie]

I am doing great! The main problem with this drug is your immune system is depressed-can't get a flu shot and you have to be super viligant with handwashing, being around people with colds, etc. I am just getting over a cold and it is taking forever.
I initially was taking 500mg am and pm, but when I saw Dr. Paynes Nurse Practitioner she advised I stay on 1gm am and pm and not fool around with dosage for now.
My main goal (per Dr.Payne) is to get my bladder to hold more urine. I presently have a 150cc bladder and he wants it to increase to 300. Well that was his original goal, but when I last met with him he would be happy with 175 working on 200. It's hard to hold off voiding.
Happy Holidays.
braykittie

[ABliske]

Braykitty, how long can you hold it with that size of a bladder. Has your capacity seemed to improve on cellcept? Or is it just helping with the symptoms?

[braykittie]

When qualifying for the study I had to do a 24hr void diary. At that time I urinated 63 times. At the finish of the study I did another void diary and I voided 26 times in 24 hrs. I can actually go (at times) 1 to 2 hours without rushing to the BR. From what I understand the bladder ulcers are healed, which leaves my bladder mcuh less irritated I don't have the past pain-just a strong urge that just gets stronger and stronger (almost like normal people). CellCept is an antiflammatory/thats why some arthritis patients are taking it.
braykittie