I'm starting Cell Cept
 

My neuro is starting me on 500 mg of CellCept 2 times a day. He didn't mention having my blood checked regularly, but my pharmacist said I should have it monitored. Do any of you have your blood tested because of CellCept use? My neuro said if I was taking Imuran he would have to monitor me for changes to my bone marrow. Thank God I have good insurance. I only have to pay $20 for a months worth of pills that are valued at $500.

I'm kind of scared because of all of the things I read it could cause including lymphoma. Apparently it also must make you more likely to get sunburned because many of the warnings talk about wearing sunscreen.

I was already taking 90 mg Mestinon every 4 hours. My neuro wants me to decrease that. I do not take Prednisone which I think many people who post on here do take.

I saw my neuro today, the last time I saw him was 2 months ago. I told him I wanted to see how things went while I wasn't teaching. I told him I wasn't any worse and he replied he was not happy with that. It has been 11 months since my thymectomy and he believes I should be in remission and not experiencing any problems. My eye droops once in awhile. When walking up steps I am short of breath and it is hard to breathe. This week I went on a 4 mile bike ride with my kids. I was exhausted afterwards, but was not worn out from it the next day.

I am supposed to try the CellCept for one month then check back in before I start back to school in the fall.

Hi Tbarney,
I'm too on Cellcept, 1.5 g/day since almost two years (+Mestinon and Pred)
I've never heard of blood checks necessary for Cellcept although my neuro made several remarks when reading my results about the fact that Cellcept did not seem to act, but she also added that an other mechanism (release of cells from the artery walls…?) could mask that indication…
One other thing, Cellcept onset of action could take 1 to 12 months…so a one month trial could be short…I noticed a real change in my status about 5 months after the start of my treatment , but which medication was effective? I did'nt have any thymectomy, but since I'm now on only 6 mg/d Pred and still tapering (and still feeling better…) I would assume that Cellcept is working…
Maurice.

CellCept
 

I have taken 1000 mg twice a day for about six months now. I have experienced no new side effects. But, I have just acquired a purple, quarter-sized splotch on my forearm that almost looks like a burn that I will have checked out as I was out in the sun for a few hours this past weekend mowing, etc. Mestinon is the one that upsets me. Eyes twitch, nose runs, stomach growls and churns. Two and a half years on that one now.

Hi Tbarney!
 

Hey sweetie!:hug: I, too am on Cellcept again - love the stuff! I DO have to have my blood work done every 2 weeks - per my neuro, but that MAY be b/c I have wonky blood.....:(

I was really scared when I read about all of the side effects, but decided that going into remission is well worth it - plus, if you read a bottle of TYLENOL you'll see tons of side effects!

When I was on Cellcept b/4, I was able to go down to 15 mgs of pred daily - it was AMAZING!

Hang in there, sweetie! It will get better!

Love,
Erin:D

Hi Tbarney,

I don't take cell cept so I can't comment on that. What I am surprised at though, is that your neuro believes you should be in remission and not having problems only 11 months after your Thymectomy. It took 3 years for me to see the full benefits of my thymectomy and was told it could take even 4. I thought, and I may be wrong, that most neuros believe it can take 1 to 4 years. Good luck with the cell cept, it certainly helps many in the group. ;)

Take care,
Pat

HiTbarney,
I just read the information leaflet about Cellcept and it is effectively indicated that blood checks for white and red cell counts, glycemy and cholesterol are recommended...!
Maurice.

I'm on cellcept and have bloodtests every 6 weeks, recommended by my GP and my neuro

Thanks for all of the replies. I did read somewhere that it could take up to 6 months to see any benefits from cellcept. I have been on it for 4 days and I have not seen any positive or negative changes.

Although I have recently physically overdone myself so I am paying for that now. We have a 12 mile round trip bike trail on our town. Last Mon. I did a 4 mile loop with the kids and handled it fine, no hills. On Friday, we did the whole thing and the rest of it has some small hills, I did walk a little. My quadriceps feel as if they have no muscles working to get me up the small hills.We had to ride to and from the trail too, so our total ride was almost 14 miles.

We came home and sat a few minutes. Then I had to help the kids with their paper route. I walked down the front steps and nearly fell down them face first, my legs gave me no support. They felt like jello. I had never felt that wobbliness before. Then I worked an 11 hour shift on my feet at our Chicken Hatchery. I help my BIL out there. This was the last night of the season.

So I overdid it, but I have not done anything strenuous the last 2 days and I have slept 8 - 10 hours each night.

But sometimes we have no choice but to overdo on a ggod day-hope you feel as ok as you can by now!

I did call my neuro the next day after I was there. They said since I last had blood work done in May that they were using that as a baseline and they will check it again on Aug. 7th.

I have complete faith in my dr. He does listen to what I have to say and does answer my questions. He encourages me to research different treatments and medicines and share with him what I have found out then he talks to me about what he thinks is the best option. I also involve my husband in all of this.

I now have to get my blood work done WEEKLY!
 

Hi Tbarney! Now my neuro is making me have my blod work done WEEKLY- just to be sure.....can't say I'm happy about it, but when it's all said and done I'd rather be safe than sorry....

I bet you are going to do GREAT on Cellcept! It is GREAT stuff! I wish I had never gone off of it, as the Imuran made my hands and feed peel like crazy!

How are you doing? Are you feeling better?

Big hugs!
Erin:D

I don't feel any better or worse. But my eye is really drooping, which hasn't happened for awhile. :(

Hi Tbarney!
 

Hey hon! Sounds like you may need a quick "pick me up". What does your dr say about your eye drooping? I know I'm about to have a few problems when my left goes "wonky" aka - it hurts like heck and starts floating off to the side.......

Hope you get the answers you need!

Love,
Erin:D