After doing the research, it seems to me that Cellcept should be replacing Imuran in many cases. Cellcept is safer overall, but of course has risks as any other do. From what I hear, you have to take more of it also. It is the safest, least side effects, most effective long term immunosuppresant tested that we have available to us, and is recommended by many, if not most experts in the field. Long term is long term, but reports show Cellcept can take effect in few months, and can take up to 48 months for maximum effect. I am looking forward to where I will be after one year on Cellcept, and I am almost half way there.

After being on Mestinon only for months, I got so weak I was collapsing. I added Cellcept, and then I got injured right away as I ate some quinine which really set me back. Anyway, I immediately went with IVIG and stayed the course with Cellcept, which sustained the benefit of IVIG and is now helping with my condition overall. It is taking time, but it is expected. I think I get some skin irritations due to it, but nothin a little soap and water over time doesn't clear up, and other than that, no side effects. I take a lot of mestinon too, so overall I get night sweats, possible a little more anxiety at times(which I am getting into therapy for) and the skin stuff I mentioned. I started out with low numbers on my blood tests early on and they have improved as time has gone by. I think the placebo effect is very important, so I will keep on, keeping on!

My two cents,

TJ

Christo,
I would think that you would want to keep all the drugs on the table. I'm not sure how the healthcare situation is over there but one of the things to keep in mind is the CellCept is very expensive. But that may be covered under your healthcare there for me I was looking at a lot of money even with my insurance. imuran and Mestinon are far less expensive at least here in the US. Unfortunately for me those two had no effect so I was left with CellCept.

You neurologist should go over all the medications with you and you can be aware of the side effects.

Other than the cost I've had reasonably good luck with CellCept. Unfortunately I had to stop taking it for a period of time for financial reasons and lo and behold MG is back with a vengeance. Now I'm trying to get back to where I was two years ago healthwise. CellCept is so slow to act I have to rely on prednisone until then. Mestinon and Imuran respond much quicker so you will know in a short time if you were benefiting from it.
Steve

you might want to check myasthenia.org under the scientific session. There are interesting audios that discuss imuran, cellcept, pred. and others.Seems like both imuran and cellcept are widely used, mentions the pros and cons. It seems it is also based on each patient, their age , basic health,etc. Unfortunately, they both can have scary side effects down the road and may not work for everyone.
One of the podcasts stresses that it's common to take 1-2 years to figure out what works best. So it's important to have patience and not get frustrated. The majority of myasthenics, it says,regain their quality of life.

good luck!

Hi Christo,
I just returned from an MG meeting and learned that Japan recently approved tacrolimus for myasthenia. (Japan does not use drugs "off" label.). As far as I know, Japan has not released their studies. I don't know if tacrolimus is approved or not in Finland.
Good luck and please let us all know what you choose,
~sherry from texas

From what I am reading on Tacrolimus, it sounds a little more dangerous and certainly controversial. I wanted to look into it now that it has been mentioned a few times around here. I think there are others here on it. It shows to generally be used in conunction with a pred and a cellcept or imuran for transplant rejection(immunosuppression)

"Side effects can be severe and include infection, cardiac damage, hypertension, blurred vision, liver and kidney problems (tacrolimus nephrotoxicity),[14] hyperkalemia, hypomagnesemia, hyperglycemia, diabetes mellitus, itching, lung damage (sirolimus also causes lung damage),[15] and various neuropsychiatric problems such as loss of appetite, insomnia, Posterior reversible encephalopathy syndrome, confusion, weakness, depression, cramps, neuropathy, seizures, tremors, and catatonia...

In addition it may potentially increase the severity of existing fungal or infectious conditions such as herpes zoster or polyoma viral infections"

http://en.wikipedia.org/wiki/Tacrolimus

Cellcept versus Imuran for one cellcept can be more expensive as Steve mentioned. For me, it would be the same price. I stand by the tests that show how effective it can be for MG(jusith mentioned some studies, and there are plenty out there to find:

"Compared with azathioprine it has significantly higher incidence of diarrhoea, and no difference in risk of any of the other side effects. Mycophenolic acid is 15 times more expensive than azathioprine.The exact role of mycophenolate vs azathioprine has yet to be conclusively established. In long-term immunosuppression, it may be used to avoid calcineurin inhibitors or steroids.

http://en.wikipedia.org/wiki/Mycophenolic_acid

Support for cellcept versus Imuran:

In a pilot trial, eight out of 12 patients on CellCept for several months gained strength or were able to reduce their need for prednisone.

At the meeting, Sanders presented a new analysis of MG patients who had been prescribed CellCept at Duke and at Rush-Presbyterian-St. Lukes Medical Centers in Chicago. Among 92 patients who took the drug for three to 45 months, improvement was seen in 67, including five people who experienced complete remission.

[CellCept] works in the majority of MG patients, he said. Its advantages over other immunosuppressants are that it has a more rapid onset and fewer side effects. He added that neurologists are starting to test the drug against inflammatory myopathies, a distinct group of muscle diseases that involve an immune attack against muscle.

http://www.mdausa.org/news/030404mg.html

Look at the recorded risks again with cellcept versus imuran:

http://www.myasthenia.org.au/html/treatments.htm

TJ - any chance you could provide links to all these studies showing CellCept to be better than Imuran in treating MG? I've done a lot of research on this and haven't found anything that clear-cut. None of the articles cited in the Wikipedia article you linked to dealt with MG, and the pilot trial that you quoted Don Sanders on was prior to the randomized placebo controlled studies that were done in 2007/2008 that showed CellCept to be no better than Prednisone in treating MG (though those studies did have serious flaws in their design, which calls into question their utility). Yes, there have been retrospective studies looking at the benefits of CellCept, and there is the clinical experience of neuro's in using CellCept that leads them to continue using it. But I just haven't found anything as clear-cut as you seem to have found.

Hi all,
Once again, thankjs for all the great input and advise. It really helps when sitting and talking to the Doc, if you have some ideas of your own as to which way you could go with this as it it such an individual desease. (the podcasts on Myasthenia.org are very informative - thanks Judith)
I copy pasted my Journal entry below as feedback from my visit today, thios is feedback on the next styeps for me in the treatment of my MG

'Had a follow up visit with my Neuro this morning. Progress looks good and positive. My blood work came back Ok, no really warning lights burning there.
The Doc suggested (and I agreed) that for now we will continue to reduce my prednisone daily intake, we worked out a plan that I will slowly reduce this over the next 6 weeks or so. If this works, then I will say on a low maintenance level of Prednisone, and not go onto any other immunosuppresent treatment. I guess that this is good news?!
Really hoping that I can keep or improve my current level of stability as we decrease the Pred.'

I think when it comes down to it we all realise that ALL of these treatments have potencially bad side effects, one needs to evaluate which ones you feel more comfortable with.

So in summary, we are hoping that I will get down to a maintenance level of 5 or 10mg of Prednisone every alternate day - with no other Immunosuppresent treatment. (oh and naturally I will continue with the Mestinon as required)
Please keep all the info coming'

Regards,
Christo

Jenn,

" any chance you could provide links to all these studies showing CellCept to be better than Imuran in treating MG? I've done a lot of research on this and haven't found anything that clear-cut. None of the articles cited in the Wikipedia article you linked to dealt with MG"

How many articles can you find that state the opposite? Matter of opinion, I suppose. My backing to do cellcept is due to the side effects I have found for Imuran versus cellcept mainly, but you can't find better numbers than what we have out there for cellcept, and that includes imuran and prednisone. Can you? There may be nothing out there stating what you are asking, and I know you do your homework. I believe you were one of the people that told me Cellcept is being used more by experts in the field. Not to mention the composition of Cellcept is close to Imuran, which is why they cannot be taken together. Seems the new replaces the old, but I am not saying Imuran will not work by any means....

"Despite being 15 times more expensive, Mycophenolate mofetil is increasingly being used in place of azathioprine in organ transplantation, as it is associated with less bone marrow suppression, fewer opportunistic infections, and a lower incidence of acute rejection. However, azathioprine certainly still has a major role"

Now that is NOT MG, but...

Wikipedia also mentions Imuran used for MG in same link, Fwiw:

http://en.wikipedia.org/wiki/Azathioprine

TJ - If you back CellCept because the side effects are less than Imuran, ok. That info is out there, and is different from saying that one is more effective than the other in treating MG. You're right that I have no articles stating that Imuran is better than CellCept, but that's my point - there just isn't a lot of sound research into the effectiveness of either CellCept or Imuran on treating MG, but I (rightly or wrongly) read your post as saying that CellCept has been shown in research to be more effective than Imuran. If I was wrong on that interpretation, I do apologize. And, yes, when you were first researching everything, I did say that experts are still using CellCept - but that was mostly in response to Curt's arguments against CellCept. Unfortunately, we just don't have a lot of research (randomized, placebo-controlled trials) into the effectiveness of the available treatments.

Christo- sounds like a good visit with the neurologist!! good luck with reducing the prednisone, and hopefully you won't have to start another immunosuppressant.

Jenn,
yeah maybe some of my statements were a little too "pro cellcept". I have to believe in it, because I am on it.

Reassuring myself perhaps through the group with a little self therapy...placebo? Something else: The local area expert here, Dr Richman, won award for his work on MG, and he is a firm believer in it....

Be well

That is great news Christo! The less meds, the better!
All the best,
~sherry

You said it Sherry! I commented on his journal. It is good news that he isn't gonna be taking more drugs. I know I would be happy about that. I think we all will hope now that you will be able to get off of Prednisone now, as that can be a tough task. Think positive! U can do it!

Best wishes always,

TJ