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Sangye
12-14-2008, 03:44 AM
Is anyone else on Cellcept for their Wegs? I've been on it for 1.5 years, and while I tolerate it okay, we can't say I'm in remission (never have been). I have improvements in some areas, though.

However, the past few weeks, I've developed some neurological symptoms that are concerning. The manufacturer of Cellcept issued a warning to physicians this year about an increased incidence of people taking Cellcept acquiring a disease called PML. (Good thing for abbreviations--it's a mouthful) It can affect many organs, but if it affects the brain, well, it's not good. That's the area of concern for me.

We have to do a LOT of tests the next couple weeks to see what's going on. Sometimes it's a blessing to be a doctor going through all this, sometimes it's a curse. Before I even saw my rheumy's face as he assessed my symptoms, I already knew it was trouble.

If you're the praying type, would you mind saying one for me? Thanks-- I'll keep you posted as I learn more. :)

andrew
12-14-2008, 07:03 AM
If you're the praying type, would you mind saying one for me? Thanks-- I'll keep you posted as I learn more. :)

You're on the list :)

Sangye
12-18-2008, 12:40 PM
Still wading through the tests and doctor visits. A brain MRI looked okay-- no signs of PML or other nasties, like stroke, blood clots, tumors, etc.... I saw two neurologists at Johns Hopkins today whose exams found there's definitely something wrong but the brain looks clear so far. In addition to other stuff, now I've gotta do a spine MRI to see if it's coming from the spine.

I've done a lot of MRIs before-- the brain are the worst! Imagine my delight to discover the MRI at JHU is a new version (not an open MRI-- those results are not accurate, unfortunately) that is not the long, skinny tube. More like a CT scan. Coulda stayed in there all day....

Thanks for the prayers. Keep 'em coming!

crackers
12-19-2008, 03:09 AM
http://th284.photobucket.com/albums/ll34/sonnytrigg40/th_PrayingforyouBluebirds.jpg
Hugs Sue xx

Jack
12-19-2008, 03:21 AM
I used to be on Cellcept and was sort of OK, but kept having minor flare ups. I switched to Myfortic and have not had a recurrence since. It must have been over 5 years now.

Sangye
12-19-2008, 03:52 AM
Yeah, Jack, that's how I've been. Not okay, and in a constant state of minor flare, with joint pain, etc.... Of course, I'm also not on prednisone.

What's Myfortic?

andrew
12-19-2008, 05:23 AM
It's a similar thing to Immuran. It reduces the Immune system and is commonly used as an anti-rejection drug after kidney transplants.

Twice
12-19-2008, 08:13 AM
I've been on Cellcept for several years. It's OK, but Sangye's description of 'constant state of minor flare' rings bells for me. I also take a bit of pred and ciclosporin.

MyerscoughClan
01-20-2011, 02:55 AM
My daughter has been on 2,000MG of Cellcept/day for the past few years, and it has worked well for her, but she also had IV of Ruituxan and that's what seemed to put her into remission. Our current problems are dealing with the damage the disease did to her lungs. Took her to see Pulmonary doctor yesterday for Bronchitus & he is sending us to a Rheumotologist he knows for a second opinion about doing another drug, supposedly better than Cellcept, I just can't remember the name of it, but it does start with an I. We have appt to see Rheum to see what he has to say about new medication, will keep you posted.

Sending positive thoughts your way.

June

DEE
01-20-2011, 03:15 AM
In my thoughts Sangye DEE x :hug1::hug1:

Sangye
01-20-2011, 03:20 AM
Um... thanks guys but those posts are from December, 2008. You can see the date right above the avatars. :smile1:

DEE
01-20-2011, 03:33 AM
MT THOUGHTS STILL WITH YOU ALWATS BLAME LACK OF CONCENTRATION TO JUST WOKE UP AND THE EXTRA 2MG PREDS I TOOK BEFORE I WENT TO SLEEP :predrage:

DEE
01-20-2011, 03:34 AM
OK SPELLING WILL BE BETTER TWO WEEKS TOMORROW :flapper:

Sangye
01-20-2011, 03:35 AM
Thanks, Dee! Why on earth did you take pred before bedtime? I hope it was just a mistake!

DEE
01-20-2011, 03:50 AM
it was only 11,45 am when i took them after i came back from the chemist as gp gave me some 1mg tablets
i went to bed because i had such a rubbish night last njght ,feeling alittle better now :thumbup:
see i do remember somethings i usually take them at 8am thanks Sangye

drz
01-20-2011, 02:28 PM
My daughter has been on 2,000MG of Cellcept/day for the past few years, and it has worked well for her, but she also had IV of Ruituxan and that's what seemed to put her into remission. Our current problems are dealing with the damage the disease did to her lungs. Took her to see Pulmonary doctor yesterday for Bronchitus & he is sending us to a Rheumotologist he knows for a second opinion about doing another drug, supposedly better than Cellcept, I just can't remember the name of it, but it does start with an I. We have appt to see Rheum to see what he has to say about new medication, will keep you posted.

Sending positive thoughts your way.

June

A drug with an I is Imuran and the generic version is azathioprine and it is often used to treat Wegener's disease. I have been on it for two weeks now. It is one of several immunosuppressive drugs that are often used.

NanTom
01-22-2011, 03:20 AM
Is anyone else on Cellcept for their Wegs? I've been on it for 1.5 years, and while I tolerate it okay, we can't say I'm in remission (never have been). I have improvements in some areas, though.

However, the past few weeks, I've developed some neurological symptoms that are concerning. The manufacturer of Cellcept issued a warning to physicians this year about an increased incidence of people taking Cellcept acquiring a disease called PML. (Good thing for abbreviations--it's a mouthful) It can affect many organs, but if it affects the brain, well, it's not good. That's the area of concern for me.

We have to do a LOT of tests the next couple weeks to see what's going on. Sometimes it's a blessing to be a doctor going through all this, sometimes it's a curse. Before I even saw my rheumy's face as he assessed my symptoms, I already knew it was trouble.

If you're the praying type, would you mind saying one for me? Thanks-- I'll keep you posted as I learn more. :)

My hubbie was on Cytoxin for a year, then put on 500 mg. Cellcept when a remission was determined. Did fine for almost three years. Last 8 months has kept having flares with extreme joint pain, sometimes fever, Cellcept gradually increased to now 3 grams and still getting flares every time prednisone taper is reduced to 10 mg. He has had no neurological problems, though. We are looking for another drug to prevent flares as he cannot tolerate Immuran. We are looking for help here!

elephant
01-22-2011, 11:15 AM
Cellcept 500mg is a very low dose. Usually they would put you on 2ooomg sometimes even 3000mg depending. Does he see a Wegeners specialist?

maggiedee
02-20-2011, 05:53 AM
Hi this is Maggiedee and I have not posted very often here but I am on cellcept and have been since August 2010. My last dosage increase was to 2000mg daily but when I saw the kidney doctor last month she said I should go to 3000mg. I needed a new prescription for that but when I picked it up at the pharmacy it was still at the 2000 level. Thinking the pharmacy had made a mistake I started to take the 3000mg. Was taking it at 1000mg three times a day. Began to tear up my stomach and when I saw the cardiologist last week the nurse taking all my info down went back to the Rheumatologist to check on the increased dosage and my symptoms and they put me back to 2000. My symptoms have never gone away completely just lessoned and since now my immune system is compromised I wear a surgical mask whenever I go out. Great for scaring little kids out of temper tantrums. "another story, another day". I know the I have been on the cellcept a relatively short period of time but I really feel like there has got to be something that works better. I want to kick this thing to the curb as I don't have that much more time, being what one would call a senior citizen. Anyway...would love to hear from folks who are having success with other medications. Thanks and hoping everyone is kicking this stuff to the curb where it belongs

Sangye
02-20-2011, 06:57 AM
Did you try taking the Cellcept with food? That helped me a lot.

elephant
02-20-2011, 07:23 AM
Hi Maggie, I take cellcept 2000mg and take it with food. I do take Nexium 40 mg every three days for the stomach. I am on other medicines also to keep wegs somewhat quiet. Are you only on cellcept for the wegeners?

NanTom
02-20-2011, 09:31 AM
Yes, and we have seen Dr. Seo (at JH ) twice. Hubbie was doing so very well for several years after going into remission, his rheumatologist debated taking him off even that low dose. Then last May, It "all fell apart" and seems like the Cellcept no longer works. In spite of longer, slower prednisone tapers, he can't go lower than 12mg. without another joint flaring. Then he needs to go back to 30 mg. and start the taper all over again. We have been battling shingles for the past month (another story - glad to share if anyone needs/cares, quite a "journey" there too). Have an appointment with rheumatologist March 10 to see what options other than Cellcept and Immuran (which he can't tolerate) there are. We are both anxious for him to try something else. Recently our naturapath doctor (med school Harvard, first) showed us information about gluten free diets helping some other autoimmune patients. Feel like I am learning to cook all over again, as some of the gluten free processed foods just don't look healthy (little fiber, high sugar) but it is a fun challenge for me. Thankfully now retired toso I have time to work at it.

Sangye
02-20-2011, 02:16 PM
Are you going back to Dr Seo? He can guide you on what other drugs are options.

I'm glad that you're trying gluten-free. It works for some people. I would suggest avoiding the processed foods, though. You're right that they're not healthy!

NanTom
02-20-2011, 04:13 PM
We live about 5 hours North of JH so see a rheumatologist in our area who has been in touch Dr. Seo. Hoping they consult again as th eJH appointment isn't until June.
Hubbie has noticed his hands are shaky lately. One of hobbies is electrical wiring and is having trouble doing that. Maybe I should look into those Cellcept side effects.
Just brought him home from the ER with a sprained ankle (slight bone chip). Is that likely to take longer to heal, also? We are still battling shingles.Poor guy!

maggiedee
02-20-2011, 08:57 PM
I have tried to take it as prescribed, which is two hours after eating. When I tried taking it an hour before eating which is also recommended I ran in to big problems so had to go back to taking it 2 hours after.

maggiedee
02-20-2011, 09:19 PM
Am on cellcept, prednisone but only 5mg a day, septra as a maintenance drug to hopefully ward off infections. The cardiologist says my heart is too efficient and drains out the arteries so they almost collapse so they have me on a beta blocker along with my blood pressure meds. Also extra iron because my red blood cell count is pretty low. When I saw the cardiologist last week he increased the beta blocker but after taking the increased dosage one time I had a terrible vertigo reaction that lasted several hours.

Sangye
02-21-2011, 01:46 AM
We live about 5 hours North of JH so see a rheumatologist in our area who has been in touch Dr. Seo. Hoping they consult again as th eJH appointment isn't until June.
Hubbie has noticed his hands are shaky lately. One of hobbies is electrical wiring and is having trouble doing that. Maybe I should look into those Cellcept side effects.
Just brought him home from the ER with a sprained ankle (slight bone chip). Is that likely to take longer to heal, also? We are still battling shingles.Poor guy!
Since he's been going up and down on pred, it might be good to travel to see Dr Seo sooner than June. It's hard to tell how often a local doc would call for help. Staying on high-dose pred like that is very dangerous--short-term and long-term. If he can't tolerate being at 12 mg then it sounds like something is wrong with the rest of his treatment.

Shaky hands are usually from pred. What dose is he on now?

And yes, any injuries will take longer to heal with pred. :sad:

Sangye
02-21-2011, 01:50 AM
I have tried to take it as prescribed, which is two hours after eating. When I tried taking it an hour before eating which is also recommended I ran in to big problems so had to go back to taking it 2 hours after.
Dr Seo was okay with me taking it with meals.