Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi All
All input, opinions and view points welcome
I have been on Prednisone for all of my diagnosis, (about 18 months now) - I started on a really high dose after my Crisis & thymectomy (60mg per day) but a few months ago I was down to as low a dose of 10 & 5 Mg a day, and I was feeling great. My fatigue has increased, and my symptoms are more prevalent now, so my Neuro has had me increase the Prednisone for a few weeks, but I must say I dont see much improvement. So next step is to consider a immunosuppressant, and I want to have a discussion with the Doc as to which way we should go, so your input will be appreciated.
All input, opinions and view points welcome
I have been on Prednisone for all of my diagnosis, (about 18 months now) - I started on a really high dose after my Crisis & thymectomy (60mg per day) but a few months ago I was down to as low a dose of 10 & 5 Mg a day, and I was feeling great. My fatigue has increased, and my symptoms are more prevalent now, so my Neuro has had me increase the Prednisone for a few weeks, but I must say I dont see much improvement. So next step is to consider a immunosuppressant, and I want to have a discussion with the Doc as to which way we should go, so your input will be appreciated.
If it were me, I think I would try to figure out if there is something in the environment or in me that has set this off, from a new carpet to some sort of personal loss. You have been pretty stable for a long time on low dose prednisone, safer, or at least more preferable for me than the big guns. There is also IVIG as an option to get you over the hump without starting something that is going to take time to work and then you won't know if it is the medication or just your MG settling back down. I have had the slow progressive , never got better until treated and good response, MG aggravated by heat and stress, so I can't really speak to a state of doing so well, then having major problems on the same medication.
I hope you can figure this out without having to make major changes in your treatment plan. b.
There are plenty of people here that can testify as to how well Cellcept(MMF) has worked for them. A few doing it as a monotherapy and many conjunctive as you are considering.There are plenty of people taking Imuran as a conjunctive therapy as well. I haven't come across anyone taking Imuran as a monotherapy. There are doctors out there that go by the older book and prescribe Imuran. Some call Cellcept a "designer drug"...
I have a friend that is a dermatologist(due to demand) Bachelors of Science PHD(chemistry) MD neuroscience)in New Mexico and he is probably the smartest fellow I know. We grew up together. I mentioned MG to him and his question...Are you taking Cellcept? That is what I would take if I had MG.
I said "Aren't you a dermatologist"? "You did say neuroscience". He said "that is for research. Skin and brain very similar." He dealt with MG when he was an intern.
He said "Both are derived from Neuroectoderm" "MG is not common, but I treat tons of antibody diseases. Same concept, different organs. Treatment the same"
Anyway, my point really is cellcept is the safest immunosuppresant you can take that I know of, and has been proven to be one of the most effective for MG. Problem is in regard to MG, there still hasn't been enough studies on it and the ones that have been done deeming it not successful are not long enough in duration, especially the newer studies for some reason. Much of what is out there is older, but we haven't had any breakthroughs to speak of that I am aware of. Certainly none that carry less risk. I feel anyone considering an immunosuppresant owes it to themselves to give Cellcept a try for at least a year, if not two years.
"This retrospective analysis provides class IV evidence that MMF begins to improve AChR-positive MG after 6 months, both with prednisone and as monotherapy."
http://onlinelibrary.wiley.com/doi/10.1002/mus.21640/abstract
"85 patients with autoimmune myasthenia gravis. The Myasthenia Gravis Foundation of America (MGFA) postintervention status (PIS) was used to characterize the treatment response in each patient. Sixty-two patients achieved a PIS status indicating improvement. Quantitative strength testing performed on the majority of patients before and after treatment also improved."
http://www.neurology.org/content/61/10/1438.short
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."
http://static.mda.org/news/030404mg.html
"In a pilot trial conducted by Dr Donald Sanders (director of the MDA clinic at Duke University in Durham, N.C.), 8 out of 12 patients on CellCept for several months gained strength or were able to reduce their need for prednisone"
http://www.myasthenia.org.au/html/treatments.htm
Cellcept doesn't work for everyone, but what does? It has proven to be no more successful than Prednisone, but that just means it is just as effective.
You asked me about getting sick on Cellcept. If you take care of yourself, you won't even know you are taking cellcept. Aside from some skin irritations and loose stools when I first started, my side effect profile is non existent.
"despite being considerably more expensive, mycophenolate mofetil is also 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."
http://en.wikipedia.org/wiki/Imuran
We are talking about less than 1 percent chance of adverse side effects.
Everything carries risk and Prednisone is NOT a long term solution.
"Mycophenolate is potent and can, in many contexts, be used in place of the older anti-proliferative azathioprine"
http://en.wikipedia.org/wiki/CellCept
In my opinion, Cellcept is like a new and improved version of Imuran...to me the choice is simple.
Call me a huge advocate of Cellcept, and I am the glass is half full guy that is skeptical about everything. I wouldn't even take Cellcept when it was offered because I wanted zero risk. I learned the hard way and landed in the ER, had to get IVIG, and went on cellcept prior to the IVIG. Looking back, I wish I would have started Cellcept as soon as my neuro suggested it(over prednisone, which I never have taken).
I wish everyone with MG could at least try it, but it does seem to be more effective for seropositive MG ers. Certainly worth a shot to anyone with MG, positive tests or not.
Some people simply cannot take Cellcept due to allergic or being ineffective, and so they move to Imuran or other.
Why can't there just be that magic potion for all of us, right? Wave my magic wand and rid the world of MG I would!
Hope this helps. There is plenty of information out there. I have only a small sampling.
Good luck to you. I hope things work out and you feel better soon, even if you don't decide to get on an immunosuppresant.
TJ
My father was taking Imuran (100mg) for about 4 months along with Prednisone (20mg). He unfortunately had to stop taking it because it was lowering his hemoglobin levels and making him anemic. Additionally I am not sure if it really helped him out. Hard to tell if he was tired because the Imuran wasn't working or because he had anemia. He recently started on CellCept (1000mg) about a month ago so it is too early to tell right now if it is effective.
CGreens is correct in that it will take like 3 months to see if Imuran or CellCept is working for you. It's a type of medication that takes time to build up in your body before it takes affect. But once it does take affect it's affects are long lasting. From what I understand from my neuro, CellCept and Imuran is designed to actually treat the MG itself. Also both can be taken with Prednisone. You may also want to look into Mestinon too, which is helpful in treating the symptoms of MG. It has ashort time span off effectiveness but can be helpful if you are struggling. Mestinon works after about an hour of taking and then wears off after 3 hours and the you take it again.
Just an fyi - my neurologist has warned me that it can take up to 6 months for immunosuppressant drugs to start "working".
I hope you find something that works well for you.
Christo, how long has it been since you increased your prednisone? When I've had to increase my prednisone after we got things fairly stable, it's taken a month or so to see improvement. But I'm with B - is there something going on that may have triggered the exacerbation? IVIg (or plasmapheresis) could be a good option to get over this.
As for Imuran vs. CellCept, really, there's not much in the way of quality research studies looking at them in MG. They're both transplant anti-rejection drugs that are used off-label for MG; they both have side effects; but retrospective studies and clinical experience of their use in MG say they're effective.
Taking the Imuran side, I do know people who are on just Imuran and don't need anything else. While CellCept has worked for a number of people, there are also people it hasn't worked for (most famously around here, Curt). And, for a number of them, even though CellCept hasn't worked, Imuran has. In my experience and various conversations, there doesn't seem to be a clear-cut preference of CellCept or Imuran over the other. The bigger question is, do you add an immunosuppressant or not?
It totally makes sense that people would be trying Imuran as a monotherapy as well. I just haven't come across them.
"I wish I could take Cellcept"
Curt was a unique individual and was what was considered to be a "refractory" case.
Studies have shown Cellcept brings less than 50 percent effectiveness for those considered as a Refractory patient. Prednisone will have to be used for those folks, and likely quite a bit, which indeed was the case for Curt.
Miss you Curt! Think of you often still...
TJ
I hear you all regarding managing the stress or at least identifying it, but as many of you know I am still fortunate to hold down fairly senior a full time job in in large global corporation, so stress is every where. My Neuro has asked me to see if I can cut back in the business trips, which I will, but these come with the job.
I am very fortunate to be where I am today considering my situation beginning of last year.
I also think that one of the questions in my mind is like crimsonjenn says 'do you add an immunosuppressant or not?'
But Prednisone is not a long term solution, so if I am not symptom free I will need to decide where I go with this.
Thanks again for all the input so far
Rgds
Christo
I get the impression that some people are reluctant to add an immunosuppressant to their MG treatment. I am curious as to why? Is it because of potential negative side effect? It makes me wonder if my Dad should be on them.
It really all just depends on the nature of the beast and what our hearts and doctors tell us to do...
Treatments aside, we can make this disease better or worse for ourselves, as I believe in positive thinking. We do what we must to have a better quality of life. If that is prednisone or immunosuppressants ,or both. Once we make the decisions based on our probing, research, understanding and comfort levels for our future, believe that your decision was the right one.
I believe this is important!