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?

Wow, you have been through a lot! Glad to hear you have support of a good specialist. It helps so much to have a doctor that knows what they are dealing with when it comes to myasthenia.

I'm not sure about cellcept or imuran. I am still trying to decide which one I want to take. Both have side effects and I'm not sure which one is the safest, but either one would probably be better than pred.

Welcome to the site! It is a great place with lots of smart and caring people that will be able to inform you on both of these medications, and with anything else you want to know about MG.

Hope you are well and strong!

Kristy

Anni- I assume that is your name I can only give direct information about cellcept. Because im on it. What i think your doctor may mean by the 'designer drug' was that it may be the less toxic of the two. Thats what I was told, and since Im very sensitive to drugs, they put me on cellcept. It is very expensive, but so far, its kept me from a crisis, and im only on 4-5 months which is right when it kicks in (usually)

I did experience memory loss, mainly short term when the medicine started kicking in, and still do a little bit along with headaches.

Yet my suggestion is that if you are very sensitive to medications, id go with cellcept for it is less toxic than imuran (from my understanding)..


Hope this helps!

I've been taking Cellcept for about three years (2g/d for one year and 1.5 g/d thereafter) without good results (and also without any side effects...).
That is true that Cellcept is a more modern immumosuppressant but there are several clinical studies which have shown the lack of succes for Cellcept even associated with Pred in the treatment of MG.
My neuro says that Imuran and Cellcept are in the same class of immunosuppressors and therefore, there should not be any difference between them in term of effectiveness although Cellcept is known for its minimal side effects.
Good luck!
Maurice.

Hi Anni,

I'm taking Imuran, and I'm feeling great....I got off prednisone two weeks ago (finally), and my sx have been just fine...I still have slurred speech now and then, but it's not where near as bad as it was before...My CBCs are normal, and I don't really have any side effects from the Imuran...I was honestly begining to think that I would never get any relief from MG, but I'm doing really well now...I'm thinking of going back to work...

Good luck...Like some of the others, I've read that cellcept doesn't work very well....Some people do well on it, but most (from what I've read) don't find much difference in their sx...

Thank you all so much for replying!! And thank you all for the information! Tomorrow will be my first day starting Imuran, wish me luck!! Im excited about finding this site and about having support from fellow Mg'ers. I will try to update with any side effects, experiences, etc.. Thanks again and good luck to all!!


p.s. I have been experiencing memory loss as well in the last few months, I hope Imuran doesnt make it worse.

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All I can do is speak from experience. I was put on Imuran and within one week had to be taken off because of side effects. I had all the symptoms of the flu. I called the doctor and he said to stop it ASAP. In two weeks he started me on CellCept (the generic - lots cheaper) and the only side effects I have had are: weight gain, swelling of the legs, hands and fingers and some headaches. I have had weakness and heaviness in my legs to the point where I am not sure they can hold me up. That is an awful feeling. I don't know if it is the extra weight, the CellCept, or a combo of the two. I also have foot pain in one foot and guess I can attribute that to the Prednisone I am trying to get off of. I was on 60 mg daily for 4 months and am now down to 10 mg daily. That has been over a 15 month period. Next week I am to cut my CellCept in half to see if the leg problems go away. Let me know what you decide to do. Take care. Kathie Glenn

I'm also new to this site, but not to MG and Imuran. I've had MG since 1969 and have been on Imuran since 1995. It's been the greatist thing and changed my life! I still use 5mg Prednisone daily and 60 mg Mestinon as needed. I also have Rheumotoid, but the Imuran has kept it well under control. LetaSu

I take 1500 mg of CellCept a day. I have a little swelling in my lower legs. I get little rashes/burns on my fingers and hands. My eye droopiness went away, my legs got stronger and my breathing improved. I do have one sore foot, but I am a teacher and stand all day, then on Fridays I have a job after teaching and I stand another 7 - 10 hours.

Like many I can only speak from my experience with Imuran. I have been on it for 4 months now and have not seen any relief of my symptoms (Yet... still have my fingers crossed tho..) I have had to reduce from 150 to 100mg and one time back to 50 mg because my white blood cell count drops to 2000 but it comes right back up, so I get blood draws every two weeks to check. Other than that I have no other side effects from Imuran.... Best of luck!