yuck
I am on it too.
much more than you
Ann

I'm so sorry,

Yes, upsetting for sure. Glad your doc watches you closely.

I will keep you in my prayers for sure. Please let us know how things go.
Take care,

Jeannie

Hi Vanessa, I'm sorry to hear this. Maybe cellcept just isn't going to agree with you. I started at 1000mg per day and increased by 1000mg daily every three weeks until reaching my current dose of 3000mg per day. I haven't had any variations in my bloodwork and my ramp up was much faster than yours. Please do let us know what the CT shows and how you are doing.
Cathi

Don't know anything much about cellcept but i do know about prayers. Praying for a good diagnosis and quick recovery.

Hi Vanessa,
Sorry to hear this. Apparently you have fallen into the small percentage of people that can get pancreatitis from it(extremely small). Since you have no pain etc, I would think that it is in the early stages for sure, and by all means would be considered at worst acute, and stopping the cellcept should have an instant impact.

I understand why you'd be upset about it, but this is one of the reasons we must have complete blood counts every month even after our body has accepted it. Of course we test even more frequently when we first start as well. So, I am thankful that you have a neuro that is on top of your treatment closely to combat any setbacks such as this. Looks like you will have to go another route to battle this...Keep us posted.

Cathi,

3000MG eh? I know others take that much and have taken that much, and I wondered... I tried to get my neuro to let me increase my dosage(2000MG a day) since it appears to be so well received and she sees no reason to. I tried though...

I want more improvement. I am not satisfied with where I am if it stays like this. I am happy that I am where I am at in relation to where I was, but I need more to feel like me again. I am thinking I will continue to improve and I must be patient, but I tried to speed up the process before. I meet with my Neuro on 12-20.

Best wishes to all,

TJ

Hi Vanessa - I'm with everybody, here. Wishing you the best.

I wish I could offer some help - with cellcept, or pancreatitis. But it's beyond my experience, at this point.

But I can send good thoughts your way - and send up prayers too. Prayers For Healing - and for Strength.

How did the appts go? - Ross

Vanessa,
So sorry. Setbacks when we feel we are doing well are hard, but so glad your neurologist kept up with the blood work. How are you feeling today and, with Ross, how did the appointments go?
b.

I am on 2,000 of cellcept and I think that is making me better. I would hate to be on more. I am down to 25 of predisone and so ready to get down more. My skin feels thin. Maybe cellcept causes that too< I don't know.
I discoved new moles on skin. I am worried now about the effects of all these drugs...but oh well
I got referral to get checked out.
Oh well we are where we are and we can only move forward.
Ann

My specialist mentioned anecdotally that he wondered if the generic Cellcept formulation was as potent as the name brand. Has anybody noticed a difference? There sure is a big price difference (thank God for generics).

Poppabrand, I've only had the generic so not sure if there would be a difference. My bloodwork has shown good results keeping my white count between 3.0 and 4.0.

TJ, I think my neuro wanted me on a large dose quickly since we are trying to stay away from prednisone. To be clear I take 1500mg twice daily, it's just easier to say 3000mg daily, same thing in the end. It's a lot of large pills. I've been on it for three months in a few days. If you are still wanting more improvement I encourage you to talk to your neuro and use Beth's suggestions from a while back. Tell her what you want to be able to do, relate it to what you could do before that you can't right now.

Vanessa, how did the appointment go?
Cathi

Thanks for all the support guys! I am leaving for my CT scan in about 20 minutes (it look a little longer because of the insurance) I was finally able to speak with my neuro last night. He has pretty much decided to switch me to Imuran once my body is able to settle down. I'm very thankful that he does bloodwork every month. It makes me feel SO much better.
He doesn't feel comfortable with me on the CellCept anymore because after only two weeks of doubling it that I had bad bloodwork. This is very disturbing to him. (I understand)
'
The interesting part: after being off the CellCept for about a day and a half I'm pretty sure I felt withdrawals. I quit the CellCept cold turkey. Last night I felt like my stomach was unsettled, hot flashes and even my muscles twitching. My neuro said it is a small possibility that I am having withdrawals. He said that since my leg muscles were twitching, it may have actually been starting to work in my body.
I am ready for the next journey :)

When I fist started Cellcept, I did have one test of bad blood work, and I was worried and felt almost sick. My WBC was too low, amongst other things, but it was followed by instant improvement as my Neuro said "please do not stop taking the cellcept". She even called me at home one time when I started and was stressing so bad that I had an episode and had to leave work. Almost like a mini-crisis I stressed myself so much. My wife had to drive me home and I had to be helped out to the car. Back to the blood tests, I believed that I had taken too much also, but I wasn't sure. I have different methods now to make sure I am not double dosing.

Vanessa, other than yourself, nobody wanted the cellcept to work for you more than I do.

Since you are moving onto imuran, I wish you the best of course. I believe it will help you.

Peace,

TJ

When we had the first Maine MG Meeting, a month ago?
I was a little surprised to see? Just how many MG people - were taking Imuran. (People who had been through every MG treatment, that there is.) And they were also reporting - very positive results. They also agreed: it took many months - to get the full benefit of the Imuran. But once the Imuran kicked in? Their lives became much better.