[dog lover]

I saw my neuro yesterday and he feels that it is time to start a long term immunosuppresant. My prednisone has been lowered to 35 mg every other day and my symptoms have started returning. He said he isn't comfortable leaving me on the pred forever but lowering the dose will just make the MG continue to get worse. We talked about Imuran vs Cellcept and he feels cellcept is the best choice for me. I am terrified of either because of the risk of long term problems. I just wanted to see how many of you are on cellcept and have you had permanent damage from it that you know of? I am trying to take this one day at a time but find myself stressing out worrying about the "what ifs" I think alot of that is coming from the lung disease that they now feel was related to the medication I was taking for a blood disorder. It was a real wake up call as far as any medicine having risks. I always read the side effects but thought they were rare and wouldn't happen to me. I now know that is not the case. My Neuro was extremely interested when I told him about the Agrylin most likely causing the lung disease. He wrote the medication name down and asked me to spell it so he knew he had it right. I have to wonder if he is thinking there might be a connection between it and the MG as well. He didn't say that but his interest seemed to make me think there was something on his mind that he wasn't sharing with me.
One other question...for those of you on Cellcept how long did it take before you started seeing improvement? I know it can take several months but am just curious what the overall timeline is.
Kendra

[Maxwell'sMom]

Hi Kendra, I was on CellCept, but had to stop because my kidneys started to tank. I'm in stage 3 kidney disease. So, if you have kidney disease you may not be able to take it.
With in about 3 weeks, I noticed a difference, but it can take up to a year. I was in my glory, it was the closest I felt to normal in years.
Imuran made me so violently ill, that it may have caused a very mild heart attack in me. They couldn't say for certain, but believed it was the Imuran.
I've heard from many MG'ers that if you get sick from Imuran, you'll probably be able to take Cellcept. For some reason it seems to work that way.
I'd chose Cellcept over Imuran any day. It's suppose to be much safer for the body.
I cried when I had to give up Cellcept. I really did. It was my miracle drug. I'm on CycloSporine now. It works, but not like Cellcept did.
After a couple months on Cellcept my kidneys did feel like I had a severe sunburn from with in my kidneys.(but I am in stage 3, we didn't know it when we started the cellcept) Still, I did not want to give up the cellcept, no choking, no slurring, no falling down..etc.. It was so amazing.
You can go to CellCepts web site, and read up, and they'll send you info in the mail, and a bunch of other fun stuff.
http://www.cellceptforliving.com/
I see there is also a coupon off of it you can get now too. (for those need it now)
I know how scared you are, all this is scary stuff. But I'm so thankful, and happy to see that your doctor is really paying attention to your concerns.
I was so terrified when I was first diagnosed, and infact thought they were mistaken. For months, I made them re-test this, re-test that. I already had a very rare disease, the odds of having another were off the charts, and then they just kept coming.
I hope I helped some..
Love and prayers
Lizzie

[Joanmarie63]

I don't take anything for my MG other than the mestinon because if there is a side effect, I get it. I am hyper-sensitive to meds and have to take benadryl with everything.

You say you have lung issues, have you been tested for Alpha-1 deficincy?

Alpha-1 is a lung/liver issue and it a missing gene, something about your liver doesn't produce something that protects your lungs. I still don't understand it completely but it is always worth a look.

[Nicknerd]

Kendra,

Sorry about your fears with the Cellcept...What did the doctor say about the cancer risk and your family history?

I was thinking that most people have at least someone in their family who has had cancer, so hopefully everything will be okay with you....I read Maxwell's mom's post, and it's pretty uplifting in terms of the MG sx disappearing! I hope that you'll be okay, and better yet, your MG will go away with this, and you'll experience no side-effects...Maybe this will induce some sort of remission too!

I hope for nothing but the best, Kendra!
Nicky

[neutro]

HI Kendra,
I've been taking Cellcept since August 2007: 2 gr/day for 1 year and 1.5 gr for over 18 months wihout any effect nor side effect...For me, it has been a complete waste of time and money and since my relapse doesn't seem to respond to 60 mg/d Pred, my neuro is thinking to try to put me on Rituximab.
I haven't given my agreement yet and will think it over in April...
Maurice.

[Juanitad]

I was started on Cellcept within 3 months of my dx in 2000. My neuro checks liver function every 6 months and so far no problems.

I do think the Cellcept helped within 3 months when I first started. I am now on 3000 mg/day which is the max dosage my neuro will consider.

I haven't had any side affects or problems that I am aware of. I would hate to think where I would be if I stopped it since I do believe it is helping.

One other thing, at least they have a generic form now. When I started, the cost was about $1,000 for a 50 day supply at 2,000 mg/day My insurance had a max at that time of $1,000/prescription so I had to get it refilled every 50 days instead of every 90 days.

The generic is a lot cheaper and I've been on it for about 6 months with no problems.

Good luck!

[Nicknerd]

Maxwell's mom,

I'm so sorry for your kidney problems- Do they know what caused these for you?

Juanita,

Has the Cellcept helped a lot? WHat residual symptoms do you still have from the MG?

Nicky

[dog lover]

Lizzie,
I am so glad to hear what a difference the Cellcept made in your life but am so sorry you had to stop it because of kidney disease. I don't have any kidney problems that I am aware of. How do they test for that?

How scary that you may have had a heart attack from the Imuran!!! My neuro said he feels like cellcept has fewer side effects but gosh yours was a huge one!!!

Thanks for the link to the website. I will check that out and YES thank goodness there is a generic now. Mine is the generic form. I am less frightened about this after reading your post. Thank you so much. this helped alot!
Kendra

[tysondouglass]

Kendra. I wasn't on cellcept until recently, when my neuro also sugguested I need long term help. But I was on pred. 60mg at first to try n get stable with that yet didn't work.

Anyway- cellcept. I'm not trying to scare anyone, yet the side affects do suck. I've gotten many of them and only been on since Jan of this year. But it does help me alot, yet I am in the hospital for heart reasons now... So not sure if it caused these problems but it's not an amazing drug.

Yet the side affects I've gotten include; tremors, lightheadedness, horrible headaches, etc. Muscle spasms, - maybe from pred. But I've got no kidney issues yet, and maybe never will. But this medicine does do it's job.

I know you are stressed out, and I know it's scary but please keep your headup and b positive even it's superhard.

[dog lover]

Joan Marie,
I don't think they have tested me for Alpha 1 deficiency. How do they test for that? My lung issues are what the Drs. believe is a result of a medication I was on called Agrylin. I have been off of it for over a month now. My Hemotologist told me this morning he called the pharmacutical company and they were very guared in admitting any kind of guilt. They said I fall into a 1% as far as developing ILD from it. He said he insisted on answers and asked them was this reversible or would I have it forever. They told him they didn't know because they have had reports of diagnosis but never any long term follow up. Very frustrating!!!