My doctor is planning on putting me on Cellcept in October, just wondering if there are any of you that are taking it and has it helped?
My doctor is planning on putting me on Cellcept in October, just wondering if there are any of you that are taking it and has it helped?
Hi there,
I have been on Cellcept for almost 8 months now. It worked wonders for me. I got down fron 70-80mg of pred to 5mg and 2000mg of cellcept. I feel 100 time better. However, I also have neuro sarc and the FDA came out with a new warning about it cause neurologic problems. Discuss with your Dr.
Good Luck
nygirl, how you noticed any side effects, such as hair loss from the cellcept?
I have been on Cellcept now for about 6 months. I am currently on Cellcept 100mg bid and weaning prednisone down to 10mg. It took me a while to see some relief of my symptoms. I was very bad off when we added Cellcept because with my neurosarc I developed hydrocephalus( water on brain) while trying to wean from the prednisone. My balance has greatly improved , I am now driving again, living independently and working part-time. iialso recieve acupuncture weekly, started an anti-inflammatory diet and physical therapy so who knows whats working? The cellcept took about 3 months to work for me. Apparently it takes a while for the drug to penetrate the blood brain barrier.
I was on 2G of cellcept / day for almost 7 months. I was headed for remission when first put on so I'm not certain how much the cellcept really did. I hit a major flare about 6 months in the doc increased my dosage to 2.5g/day. Within a week I had large, purple sores on my back so I weaned off. Doc thinks it may have been the beginning of shingles, a known side effect of the drug.
Some folks swear by cellcept. Others, such as myself, are on the fence. Sarc is a moving target...you need to find what works best for you.
My neuro (I also have neuro sarc) started me on Cellcept 1000 mg twice daily about 2 mo ago and we're decreasing my pred. which is currently down to 15 mg/day. I've noticed improvement in balance and the brain fog doesn't seem to be such a problem.
Overall, i feel better than I have since becoming ill in April '07.
nygirl, do you have any more info on neuro problems caused by Cellcept. I'm going to search the internet today to see if I can learn more. I guess we're all in situations that have no easy answers
Hope today is a positive one for all
I personally have had no side effects from the cellcept. My hair is always thinning since I started pred. but no major issues...no one but me can tell I my hair. As fast as I lose my hair that is how fast new hair grows in.
So is it usually diagnosed for patients with neuro sarc?
And as far as the hair loss, thats no issue, I cut my hair so short no one would even notice.
I have been on cellcept 500mg for about a month and I have noticed improvement with the pulmonary sarc. I do have more aches than I've ever had but I just turned 50 so maybe its a combo :) I am lowering the prednisone to 7.5 mg and increasing cellcept to 550 mg 2 times daily. This medicine is expensive even with insurance. I wonder if the price will double??? Does anyone know?
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