[sandy56]

Hi to all
I have been on cellcept for 2 weeks and I am starting to see a difference! The biggest change has been to my vision. I have much less diplopia, blurred vision and ptosis. I can get out of a chair without using my arms and I have started walking again. My body is handling stress so much better too. My side effects have been minimal(mild nausea and headache) Ihave labwork tomorrow to make sure my liver and kidneys are doing ok. I am keeping my fingers crossed! I can't believe how much better I feel!

I will be starting reclast infusions soon for severe osteoporosis of my hips. My Rhuemy has done tons of tests to rule out Lupus, Sjogren's and RA. She seems to think I have something else autoimmune as well. I hope not. I am tired of getting diagnosed, I just want to keep getting better.
Thanks for all the info and support!
Sandy

[4-eyes]

Great to hear, Sandy! Keep taking care of yourself!

[SoftTalker]

How great that you are seeing good results with Cellcept.

It took me about four months before I really began to see a difference.

Doc gave me Cellcept to help me reduce and possibly get off prednisone.

With Cellcept, I have been doing fairly well with MG, until recently, but extremely high temperatures and humidity where I live, and an unusually high amount of stress in my life have recently exacerbated my MG symptoms.

But I do believe, I would be in a much worse exacerbation if not for the Cellcept.

Hope you continue to get better!!!!

[davew41]

I just got this tonight ...cellcept... (liquid form) and wow reading the booklet and all the fun we can have on it,, well it may very well sit in the bottle for a long time. possible causes of at least 2 types of cancer ( trying to fight cancer with lambert eaton i get a cat scan every 3 months and blood work) all kind of wonderful infections, this stuff sounds like a treat..
o well not much treatments left to get me going again as ivig does almost nothing for me neither does the prednisone anymore..

[SoftTalker]

Originally Posted by davew41

I just got this tonight ...cellcept... (liquid form) and wow reading the booklet and all the fun we can have on it,, well it may very well sit in the bottle for a long time. possible causes of at least 2 types of cancer ( trying to fight cancer with lambert eaton i get a cat scan every 3 months and blood work) all kind of wonderful infections, this stuff sounds like a treat..
o well not much treatments left to get me going again as ivig does almost nothing for me neither does the prednisone anymore..

dave

I have been on Cellcept since February 2013.

Imuran gave me pancreatitis - so had to toss that RX in the trash.

I have had a good response to Cellcept - that is, until recently, when I had a near crisis. Circumstances in my life - higher than usual temps where I live, recent severe stress (loss of 2 very very loved ones ) and then a reaction to the flu shot - (not sure if it was the shot itself or the vaccine) severly exacerbated my MG. Almost to point of MG crisis.

In fact, you posted on my flu shot posting, touting vitamin D3.

Anyways, I sincerely believe the Cellcept has helped me greatly (until this recent MG incident) - and might have been the buffer that kept me from full crisis. I have worked up to being able to walk for 15-20 minutes (with cane for balance and sometimes, support). I have become able to participate in family gatherings, etc. for much longer periods of time. Physical activity, exercise, social interactions ,etc. had become a "fond memory" for me. I am slowly regaining these life pleasures - due to Cellcept.

Because of long-term use of prednisone, my neuro has been working with me to reduce or get off of it. Altho my daily dose of the &^%&* prednisone has been pushed way up (again), due to my recent acute MG exacerbation my neuro is emphatic that we (he and me) will be able to reduce prednisone again - with my Cellcept dosage to be increased again, as prednisone dosage goes down.

YUP, the risks for cancer - with the use of Cellcept are there. My dermatologist screens me every 3 months for skin cancer. (I am fair, light-eyed, Irish descent) - so my risk is even greater.

The risk of lymphoma - yep - it is there. My beloved Mother had lymphoma. So docs watch me carefully for that bugger.

STILL, I am willing to take the risks of Cellcept because my quality of life had deteriorated such to the point that I had been almost completely sedentary and mostly housebound. Life was/has been passing me by.

From my point of view,
SOMETHING, sooner or later, is gonna get me.
Hopefully, it is later than sooner.

I know I am not gonna get out of this world alive - in a physical sense, that is.

So, I have been willing to take my chances on Cellcept.

Thankfully, (at here in the USA - at least, now, at this time in our medical care history) - we have the right to make choices about our healthcare.

I don't own stock in Cellcept. (Heck, I am using generic - and it still is working wonders for me)!!! But I am happy to tell my positive experience with it.

It is those stoooopid flu vaccines that I am rethinking nowadays.

Good luck with your decision on Cellcept.

[sandy56]

Originally Posted by davew41

I just got this tonight ...cellcept... (liquid form) and wow reading the booklet and all the fun we can have on it,, well it may very well sit in the bottle for a long time. possible causes of at least 2 types of cancer ( trying to fight cancer with lambert eaton i get a cat scan every 3 months and blood work) all kind of wonderful infections, this stuff sounds like a treat..
o well not much treatments left to get me going again as ivig does almost nothing for me neither does the prednisone anymore..

Good Luck Dave. I read all the scary information too but decided I was tired of living such a limited life. I decided to try it with as positive attitude as possible. So far I am very happy with how I am feeling. I always think it best to go with your gut on these decisions.

[davew41]

Well i have 3 days off next week, I do not want to chance any side effects while i work (standing retail 12 to 14 hour shifts yes standing is ok once i'm up its bending and walking that i go tumbling down with..) so maybe Tuesday before my ivig i'll give it a go.
how long after the fun prednisone do i take this stuff?
im supposed to start cellcept 2 times a day 2.5ml each.

Life around 3 meds again fun fun
tyroid pill wait 1 hour prednisone then wait?? hours before cellcept..

[sandy56]

Originally Posted by davew41

Well i have 3 days off next week, I do not want to chance any side effects while i work (standing retail 12 to 14 hour shifts yes standing is ok once i'm up its bending and walking that i go tumbling down with..) so maybe Tuesday before my ivig i'll give it a go.
how long after the fun prednisone do i take this stuff?
im supposed to start cellcept 2 times a day 2.5ml each.

Life around 3 meds again fun fun
tyroid pill wait 1 hour prednisone then wait?? hours before cellcept..

I take it with my prednisone in the morning. The only thing I was told was to take it on an empty stomach(1 hr before or2 hrs after food). If you have stomach upset you may want to take it at a different time from other meds. So far my side effects have been minor. I did have an eye infection that needed antibiotic eye drops last week though. I hope you have a positive experience. Good Luck.
Sandy

[limpy]

Originally Posted by davew41

I just got this tonight ...cellcept... (liquid form) and wow reading the booklet and all the fun we can have on it,, well it may very well sit in the bottle for a long time. possible causes of at least 2 types of cancer ( trying to fight cancer with lambert eaton i get a cat scan every 3 months and blood work) all kind of wonderful infections, this stuff sounds like a treat..
o well not much treatments left to get me going again as ivig does almost nothing for me neither does the prednisone anymore..

Dave, have you tried 3,4 Dap? It is the go to drug for Lems. I take it with mestinon and it makes a difference in strength. I also have other suspected autoimmunes, so am not near normal and have to do plasmapheresis as well. I am hoping to get on some immunosuppressant other than prednisone soon, as it doesn't do anything for me other than raise my blood sugar and make me feel worse.
Only certain doctors can prescribe Dap, but it is free in the US on a compassionate use basis through Jacobus Pharmaceuticals. If you haven't tried it, you really should give it a try. It is similar to mestinon in that it is short acting and only intended for symptomatic relief and not an immunosuppressant. No major side effects and has been used to treat Lems for over two decades.

[davew41]

Originally Posted by limpy

Dave, have you tried 3,4 Dap? It is the go to drug for Lems. I take it with mestinon and it makes a difference in strength. I also have other suspected autoimmunes, so am not near normal and have to do plasmapheresis as well. I am hoping to get on some immunosuppressant other than prednisone soon, as it doesn't do anything for me other than raise my blood sugar and make me feel worse.
Only certain doctors can prescribe Dap, but it is free in the US on a compassionate use basis through Jacobus Pharmaceuticals. If you haven't tried it, you really should give it a try. It is similar to mestinon in that it is short acting and only intended for symptomatic relief and not an immunosuppressant. No major side effects and has been used to treat Lems for over two decades.

no I have not I can ask My doctor if he can get me some