Quote:
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..
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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.