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...
I am on Prednisone and have been for 4 years; up and down with my dosage. My neuro wanted to put me on Imuran a couple of years ago, but I declined after I read about the kidney damage it can do. He told me I had to have a blood test once a month on Imuran. Now this post about Cellcept. I think I will make an appointment with my neurologist to discuss this. I know all three of these medications have side effects and are detrimental to us, but for the majority of MGers what, in your opinion is the best course of treatment or at least what worked best for you. I know Russ only took Prednisone (correct me if I am wrong) and he went into remission. I am not seeking remission so much as stabilization of this disease.
However, for most of us getting rid of MG problems means immune suppression of some type with some medicine.
So we deal with these problems:
1. Immune system suppression. That means we are more likely to get every cold, flu, fungus, infection, etc. that comes along. We are also more likely to get cancers that our immune system otherwise may have gotten rid of. That is the case with any immune suppressant we take.
2. Particular side effects of the "poison" we choose -- both short term and long term. And that is where we get to make some decisions as to how each med will affect our daily lives, our long term future, our ability to have children, etc.
3. Costs and availability of our treatment. Sometimes we are not covered for what we think is the best treatment, and can't afford it ourselves so have to choose what we can pay for. Sometimes we can't get treatments locally.
In choosing a medication with our neuro, we must state our own goals.
For example -- I want to have a physical working job; I want to bear children; I want to travel; I don't want to be tied to a hospital/clinic; etc. Then we look at the other health problems we have: high blood pressure, diabetes, obesity, etc., and often other immune system problems.
Then with our goals in mind and the other health issues, our neuro helps us figure out which medication will be best for us both short and long term. If we read unbiased information as to the choices, it can help us with the decision. We know we will have to take something that is harsh, but when it comes to MG disabling us vs being functional, most of us want the functionality badly enough to tolerate side effects that are also bad.
My own initial goals were to rapidly get functional and to be as little tied to a clinic or hospital as possible. My wife had just gotten diagnosed with Stage 4 breast cancer and I figured my main goal was to be her driver, support system, care giver if needed. I was in a rush, didn't want to have my own appointments and treatments taking up my time, and needed to do the housework, yardwork, some part time work (just retired mostly).
And my neuro said "Mestinon at high levels as needed and prednisone at high levels" will be the fastest and least time spent in treatment. She also said that when my wife finished treatment and I had MG under control with my initial treatment we would move to the long term strategy -- Imuran was what she thought was effective, although Cellcept was also a possibility.
The standard MG treatments are not really so standard, as each of us may respond differently to a particular drug. Whereas cellcept works well for some, it doesn't for others, and that is true for every treatment.
One should not choose a treatment based on what we say about our own treatments here on this forum. Each of us has different levels of MG, different other health issues and different goals. Chooses wisely by doing your homework and clearly understanding your goals and what level of side effects you can live with to reach those goals.
Good Luck
Russ
Yes I agree with you and sort of came to that conclusion myself. So I am just going to take the Prednisone and Mestinon and some supplements, not too many, as that can be another cog in the wheel of trying to deflect MG. I am not going to stress about it any more, just keep doing what I have been doing. I have had good results in the past and hopefully I can get back on track. I do feel breaking my arm sent me into a bit of a tailspin, whether this is true or not, I'll never know, but it has been almost 6 months and I am just going to take things as they come. I am functional now, not exactly where I want to be in terms of my activities, but not bedridden either.
Dealing with all of this can drive you nuts and from everything I have read here and on Facebook, there are various incidents that are never quite the same. Everyone has a different story and since I have no idea of these posters age, weight, activity level, lifestyle, etc., I can't let all of these different treatments get to me into thinking there is something magic out there. If I have this for the rest of my life then so be it and see what the future brings. Again, I have to let go of this obsession of trying to beat the system. I am rather anti western medicine, but I also know it has helped me in the past get over things, so I will just move on with my life and see what shakes out.
As long as I can take my walks, I will forgo the tennis and biking if I have to.
I guess the message that we all need to take away from this - it's certainly said enough - is that whatever medication we ourselves take it is personal to us and our neurologist and should not be used as a measure for what others should be prescribed or for that matter ranked as being better or worse than any other. Just for the hell of it I do not include alternative medication in any way or form - this simply, is not the place for it.
That said, one has to accept that we are all learning on here and it does make sense to know what others have by way of medication, their symptoms and the result.
I suspect it's a bit late, at least for me, to be looking forward to a cure for MG, but I'm fairly content with where I'm at and relatively unrestricted in what I want to do with the rest of my life.
Megs prednisone 20mg every other day seems to be working . I feel thebest i have scents the mg started my white blood count was alittle high so we are watching it to see if it goes down but l feel really good ii seems to be working for me
i totaly agree with russ on his statments of side effects,
thru the cuple of years i have allsways recomended that people should check toughroly their intakes of drugs, by chacking with the site DRUGS.COM.
they are the best site on the net to verifiy what side effects causes are and danger, due to the fact that most of the drugs, like cellcept, inmuram and others are, dangerous to myasthenia gravis, as they are advise in theyr sidde effects notice, principaly mg patients generalize/bulbar, as their respiratory system can be put in dangerous situation.
i know to that we are all adults and can make our own decision in regard of what we should take, and meds may work for some anf for others may represent danger on the environment.
they are people in this blogs, whom depend in the response of questions posed in it, and beleive me, that if anybody would say i got a bad reation and endanger my life, i would be petrified
so please take this remainder as a deterrent of what it could be.
this is the reason why tey are actualy 2 basic drugs to fight and control mg.
mestidone and prednisone, and our commun sence to mesure our intakes with lusses and minuses
best of luck Andre
'You should not take azathioprine if you are allergic to azathioprine...'
Personally, I prefer the route of striking a good working relationship with my Neurologist which is based on mutual trust