Advertisement
Do you suffer from chronic pain?
Learn how straightening up can ease your pain
Chronic pain management tips
Learn how straightening up can ease your pain
Chronic pain management tips
More DailyStrength
|
medication
|
Watch this |
| View More Posts Ignore |
okay-I have had this disease for over a year and have yet to find a ''drug'' that willwork for me
I am on Prednisone. I have tried Mestinon-it made the symptoms much worse-I also had a 3 month course of IVIG for a total of 12 treatments. Then I tried Imuran-had GI issues so that had to be stopped Then I cyclosporine-that has seemed to helped but the theraputic levels (blood) is low and everytime that it is increased my kidney bloodwork gets worse so that has to be stopped. My next one to try is Cell cept-I can't start that until I have been off the cyclosporine for 2 weeks and could take 3 months to be effective. My questions are: how effective have people found cell cept to work? Has anybody had major side effects-my doctor has mentioned several times about a brain infection and anemia-part of me feels okay about trying this but with all the trouble of trying the other medications and they are not working makes me weary about trying them. has anybody else had such a hard time finding a medication that works for them?? I am getting frustrated!!! I don't want to be on steroids forever and at times just want to stop everything and let things play out as they may. any help-advice is greatly appreciated deb Posted on 06/08/12, 02:14 pm |
| 10 Replies | Add Your Advice |
| View More Posts Ignore |
I have been on cellcept for several years with no adverse reactions. It does take a while to take effect, I believe 3 months or more. It does work but in my cases my not be enough. My doctor is still exploring other drugs and/or treatments to consider.
Bruce 
|
|
|
|
||
| View More Posts Ignore |
|
|
|
|
||
| View More Posts Ignore |
Hi Deb,
Sorry, just seeing this. I have been on cellcept for almost 9 months and have not had any of the scary side effects you mention. When I first started taking cellcept I had an upset stomach that was controlled with nexium and eating a snack with each dose (though the instructions say to take on an empty stomach). My dose was quickly increased to 1500mg twice a day. All my blood work stayed as it should with white cells low but always between 3.0 and 4.0 until a few months ago when my white count dropped too low. My neuro decreased my dose to 1000mg twice daily and I haven't had that problem again. My neuro has always told me we will give cellcept 1 to 1 1/2 years to work. His comment is that the studies on cellcept have been too short in duration. I am on board and hopeful that cellcept will kick in and work. I hope you find that cellcept works for you and quick. Cathi
|
|
|
|
||
| View More Posts Ignore |
I started cellcept but had to stop due to it irritating my ulcer. Hoping it works for you. Finding the right treatment can be so frustrating and it takes so long to see if a treatment is going to work or not. Until you can begin the cellcept and until it kicks in, can you continue IVIG or try plasmapheresis?
-sherry
|
|
|
|
||
| View More Posts Ignore |
Hi.
You are concerned about cellcept but have tried all those other drugs, which have far worse side effect profiles. You have less than or equal to a 1 percent chance of serious problems from it. Sometimes cellcept doesn't take right in people's system, and of course sometimes it doesn't work. You will need a minimum of a year to determine if it works for you. I like the approach Cathi's neuro is doing. Besides Mestinon, Cellcept is the least toxic treatment available to us, and from what has been tested it is also one of the most effective. It has been effective for me. I have done cellcept monotherapy for a year and a half. I pushed my MG back with one round of IVIG and toughed it out with higher mestinon dosages until cellcept really helped(5 months with me for significant). My neuro recently offered for me to do more IVIG, so that option is open for me. I think we both know that the cellcept just may not take me all the way. The follow up appts continue to show improvement with increase in strength, and decrease in mestinon. What will the future hold? I am hoping for more improvement, of course. Improvement for me. Improvement for you deb. Improvement for all of us... All the best, TJ
|
|
|
|
||
| View More Posts Ignore |
I've been on Cellcept for 9 months, the day after diagnosis last September with no side effects. I take 1000 mg, bid. My neurologist has also informed me that it may take 18 months to start working. This is thd same information I was proided at the MG Conference in Las Vegas. I agree with TJ that your other drugs are tought to be much more toxic. I understand your impatience. It's hard.
Marvin
|
|
|
|
||
| View More Posts Ignore |
I am on Mestinon, prednisone 60mg and CellCept 1000 BID. All this started gradually after I was diagnosised in the beginning if January. I am very much improved but no where near where I was a year ago. No problems with the CellCept but would give my eye teeth to get off the prednisone.
|
|
|
|
||
| View More Posts Ignore |
|
|
|
|
||
| View More Posts Ignore |
|
|
|
|
||
| View More Posts Ignore |
Deb,
It can take a long time to figure out what meds control your symptoms. I was diagnosed with MuSK-thpe MG in November 2009. After trying Mestinon, which only worked for awhile, I was put on a high dose of prednisone. When that alone didn't work, I started Cellcept. It's been about two 1/2 years and I've almost tapered of the Prednisone. It took about 18 mos. for the Cellcept to really kick in. I am doing very well on Cellcept - no side effects. My neurologist prescribes blood work every 6 mos. to make sure everything is OK. The chance of a brain infection is very small, but my doctor does want to eventually try to taper me off even the Cellcet. Time will tell. Hang in there. Don't forget that the MG Foundation of America can provide great information - or look for a Chapter in your state. The website is: www.myasthenia.org. Priscilla
|
|
|
|
||
| Add Your Advice |
Advertisement
More From Around the Web
