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Old 07-08-2010, 04:17 AM #11
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A paper recently published indicates that Cellcept might be effective after all…
http://www.ncbi.nlm.nih.gov/pubmed/20405499
Maurice.
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Old 08-15-2010, 12:42 AM #12
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Default Tbarney:the beginning on your journey with CellCept?

Hello!
I'd like to ask you about time ,when you first started CellCept. Did you have problems,like more prone to infections,headaches etc?
Did you take Prednison and how much at that time?
How soon you simptoms started to improve?
Thank you,I hope you cope with the heat and stay well at this time.
Anni's mom
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Old 08-16-2010, 07:02 PM #13
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I do not take prednisone daily. I have taken it on 2 occassions for 1 week at a time. It took me over 3 months to see an improvement with CellCept. I never had headaches.
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Old 11-04-2011, 01:09 PM #14
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Hello, I am also new to this site. My husband has MG, was once on Celcept which his Dr's in Charlottsville Va. kept him on for 2 years, along with IVIG infusions. At one point, the Dr's decided to withhole the IVIG to see if the Celcept would take over, they then changed him to Immuran...he has been on this for 1 year and can see a great improvement in him over the celcept. I'm not sure he will ever be able to be taken completely off the IVIG infusions, but as he approaches retirement, I find that I may have to work many years longer so my health insurance will be primary over SS.

My husband also has the double vision and have extensive testing at UVA, it was determined there is nothing they can do about that.

As a caregiver, my heart breaks to see a man who was so robust be brought down to his knees.

Blessings on your journey


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Originally Posted by anni77777 View Post
Hello all!! I am new to this site and this is my first post. I have read some of your threads and have a question. I was diagnosed with MG November 2009 after about 5 months of heavy non-stop coughing and every wrong diagnosis you could thing of. I saw doctors, specialists, herbalists, anyone you could think of. My diagnosis came right before my thymectomy (which was thought to be a thymoma at the time and MG wasnt even mentioned until I emailed my thymus specialist and informed him of my double vision, extreme fatigue and muscle weakness). My "official" diagnosis was just ONE day before my thymectomy. I was so weak before surgery I still cant believe the head of the nuerological dept. in IU medical gave his approval for the surgery. After surgery I went into myasthenic crisis could not be extabated. I was on breathing tubes, on heavy sedation, and eventually had a trach put it. After 40 days in the ICU the trach came out and I came home (January 1st, what a wonderful day it was!!). Im currently on 30/10 of prednisone and mestinon 3 times a day. Also tons of vitamins and homeopathic meds. Anyway, I went and seen a specialist in NY last week who has been working with MG patients for over 30 years. Dr. Adam Bender is his name. He told me that either immuran or cellcept is what he recommends to taper off of prednisone and that it does wonders, he, like my other nuero here in town of course recommended cellcept over immuran because its a more "designer" drug, whatever that means. My question to all of you that have been on either one is how you have reacted to it and if you prefer one over the other (if you have been on both). At this time I still do not have medicaid and with my current crappy insurance cellcept would run about $237.00 for a month supply..immuran running a little bit less than that. I would really love some input from you guys as there is nothing more I would love right now than to get off of prednisone. Over the last 4 months I have gained back the 25lbs I lost in the hospital and my face has blown up like a balloon. Also I feel that when I get up in the morning the back of my foot hurts and it feels like the muscle and bone there is getting weaker. I have talked to several people in other forums who have mentioned bone deterioration with prednisone and one gentlemen even mentioned that he broke his ankle numerous times. Im kind of freaking out a bit and really REALLY would love to get off of this scary drug. Any input my friends?
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Old 11-22-2011, 08:56 PM #15
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Hi

for me, cellcept would only work in combination with steroids.
I am now on imuan because of the effects your husband is experiencing and also after 2 years on steroids my mental health deteriorated.
when I got off the steroid and stayed on cellcept after around 3 months it quite working. The imuan only gives me small results but better then nothing at this point.
everyone is different so only your body can tell which is the best for you.
I was reading that once you get stabilized on steroids if cellcept is introduced the steroid dose can be smaller, which would give less side effects

good luck
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Old 11-23-2011, 07:33 AM #16
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I have been off Imuran for 2 weeks and feel better than I have in 6 months. I worked in yard for 2 straight days and NO NAPS! I am on Cellcept and 20mg of Prednisone now slowly increasing each.
Mike
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Old 11-23-2011, 12:15 PM #17
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Does the Immuran give anybody leg aches and what did you do about them?
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Old 11-23-2011, 02:29 PM #18
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Quote:
Originally Posted by iwasanurse View Post
Does the Immuran give anybody leg aches and what did you do about them?
I do get the same leg aches but I thought it was from other medication I am on. Mine is mostly during the night, but not every night. If I am up I take some neproxin and it seems to help somewhat.

good to know it might be because of Imuran.

randy
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Old 11-23-2011, 04:24 PM #19
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I had terrible cramps in my feet and ankles.
Mike
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