4 months in, tough to start over and ruin any progress. I imagine there is no consideration for Cellcept by your Neuro because you have put in the time for Imuran? Did you mention Cellcept to begin with, before the Imuran was started and/or has your neuro been against cellcept from the beginning? If so, why? These are the questions we need to ask to hear the reasoning. Some neuros just don't want to try some of the more modern medicines and stick with what has worked for them in the past. Imuran has proven to be effective for MG, so...

For me, my neuro prescribed Cellcept from the beginning and was confident. Wish I would've followed right away, but eventually I had to do something.Me being very cautious, the choice was easy between the two for me based on the side effect profiles, promising results etc and I was given a choice between the two for monotherapy.

I have been on Imuran now for 2 and a half months (so a little behind you), and i haven't experienced too noticeable of hair loss. I think i am losing a bit more than usual, but nothing thats alarming.

I think you should stick it out a bit longer just to see if you gain the benefit from the drug. Although not a first choice, maybe hair extensions? In addition to them offering length they also can offer thickness.

Hi Elinora!

I started on Imuran and at this point have been taking it for about six months. I did notice some hair loss during the first few months, but it eventually slowed down to a normal rate. I'm not sure, but my guess is that my body got used to the medication and adjusted. That said, I was certainly alarmed when I started pulling clumps of hair out of the shower drain! However, on the positive side, it forced me to get creative with my hairstyle :)

I added Cellcept to my regimen about two months ago and so far haven't noticed any intolerable side effects. The downside tends to be the inconvenience factor: Cellcept is generally taken twice a day (as opposed to once a day for Imuran) and the timing can be a bit difficult, since it is supposed to be taken either an hour before eating or two hours after. This can be problematic because Cellcept can cause stomach upset for some people (this is the case for me on occasion), but I got the go ahead from the neurologist to take it with a few bites of food (never a full meal, though) if that happens and that usually helps!

radioflyer,

Why are you taking Cellcept and Imuran at the same time? The risks cannot be measured I would think.

It is unusual to take both and this is not common practice in my opinion since their mechanisms are similar via purine synthesis inhibition.

You are going to really have to watch your WBC especially and other counts.

I am on Prednisone 60mg and CellCept. I have been on CellCept since last April orMay. No remission so my neuro is afraid to cut the Prednisone. I use to wear my hair highlighted but 4 months ago when I had it done it broke terribly. My hair has also gone from bone straight and slightly thin to somewhat thinner and very curly. I tolerate this. Just wish I could get off the high doses of pred so I could get my real body back.
Mary

Hi cgreens,

I have also been worried about the risks of combining Imuran and Cellcept, but since I've not had much luck with most of the other treatment options, my doctors did some research and decided that it was worth a try. I get blood tests every two weeks, so they monitor things pretty carefully, and so far, I haven't had any unusual counts. I do worry about the long term effects though...

Troy, I just started seeing my new neurologist about a month ago, so he was not the one who started the Imuran. That said, seeing me now, he does not think I'm sick enough for Cellcept. I'm not sure why, how, or if Cellcept is a bigger gun. It's true; I'm not very sick at all right at the moment, so maybe if Imuran starts working, I'll be doing well. I'm still on 250 mg of prednisolone once per week, and I think my neuro wants to increase that, since I have to use Mestinon quite frequently at the end of those 7 days. My goal is to need NO Mestinon.

What you said sounds encouraging, radioflyer57. If the hair gets worse, I'll ask to switch once the warm weather comes, when I'll decrease my activity levels.

Mary, I'd like to get my real body back, too, but I am pretty sure I read somewhere that the chances of staying symptom are were greater on a combined steroid and immunosuppressive therapy. Hopefully that implies a very low dose of steroids. I'm tired of the moon face.

Ugh! I've only been on Imuran for a month so I haven't noticed any side effects yet, but my hair has been falling out for about a year (from the prednisone maybe? not sure)...if I lose much more I'll be bald! I know, I know, I'm lucky that I'm not sicker, it could be a lot worse, it's only hair...but still...this sucks, you guys.

(sorry, I'm just feeling whiny today. I don't have any helpful insight to offer. :)

Luck is relative, and there is nothing lucky about daily ingesting poisons to remain upright and functional. You have whining rights to exercise now and then. :-)

My neuro insisted it was my choice when I said I was hoping to get off prednisone and go to Imuran or cellcept. She said that those two plus methotrexate were the alternatives to prednisone that her patients took--and they all worked for some folks and each had problems -- as well as being slower to act.
She thought, if I were not having osteoporosis problems, that small doses of prednisone on alternate days was a reasonable choice too.

I can truly say that prednisone has made me a much more substantial person ;-)

Yes, I can deal with a certain amount of adversity, if it's something I can't control or change, I learn to just go with it. But the part that really breaks my heart is that, like you say, Elinora, I'm willingly ingesting poison (even though it is better than the alternative, going untreated). And now I'm trying to recover from the side effects of the medicine in addition to recover from the disorder.

And though I complain about prednisone, it is true that I lost so much weight between not being able to eat from the MG, and the radiation killing my appetite, that I would have probably wasted away to nothing if it weren't for the prednisone. Even though I might be losing bone mass as fast as I'm gaining fat on my stomach and cheeks.

My hair got thinner on both cellcept and imuran, it also stopped growing. I averaged a haircut about once a year. Since I am off both and on tacrolimus my hair has started growing some .
Good luck
Annette

Annette, I did not know about that medication.

Thanks, all!

I took imuran and now pred and cellcept. On Imuran I developed a melanoma so was pulled off of it . Pre is pred with al lof it's wonderful side effects but it's iven in combo with either cellcept or imuran as it's felt they work more effecctively combined. On cellcept in the beginning I lost a lot of my hair and was very upset. It's been over 3 yars now & it has grown back curlier and thick. My hairdresser prescribed Nioxin shampoo that many chemo patients use. I still use it and really thin it helped me. It also has a conditioner and a scalp stimulant and you use all 3 together. If you have a Sally beauty supply near you they have a generic brand at a 1/3rd of the cost and I like it very much. Hang in there - it's very scarey to have this happen and being a woman I was very upset.

My Nuero stated that she had better results with Cellcept. so that I was started on. It seems to have my MG under control. Havent had many side effects. I never had much hair so that was not a problem. The prednisone on the other hand has caused my hands to shake badly. I thought one of the problems with Cellcept was cost.
Will