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...
The website http://www.medscape.com/viewarticle/482695_3 reviews MG treatment with prednisone. The treatment here is more aggressive that mine was. I am curious if this seems like the treatment you got on prednisone?
Schedule number 1: has some risk of startup exacerbation from prednisone
60-100 mg daily to start -- recommended 100 mg for adults for 2-4 weeks, then switch to alternating days 100 mg eventually tapering
Or Schedule 2: Less risk of startup exacerbation
start at 10-20 mg per day and increase by 5 mg every 3-5 days until target of 100 mg, then switch to alternate day 100 (taking 6-8 weeks to get to 100). Again, eventual tapering
quote;
"A study from the University of Virginia has provided very good data regarding the efficacy of prednisone in MG. In the treatment of 116 patients with prednisone, a marked improvement was seen in 52% (minor symptoms and return to activities of daily living), a moderate improvement in 15% (functional limitations), no improvement in 5%, and pharmacologic remission (asymptomatic on medication) in 28%. The mean time to maximum prednisone benefit was 5.5 months (range: 2 weeks to 6 years). This study also pointed out that only 14% of patients were able to be completely taken off of prednisone."
The above has 80% getting quite good results from prednisone only and in less than 6 months.
Tapering: "After improvement is achieved, the prednisone dose should be decreased. It is important not to taper prednisone too soon or too quickly. As with dose, there are no established guidelines for this. In general, patients can be maintained on 100 mg every other day for 2 to 4 months before tapering. It may take a week or two for deterioration to occur following a decrease in corticosteroid dose. Therefore, taper by only 5 mg per day every 2 weeks. When the prednisone dose is decreased to 20 mg every other day, taper even more slowly. Although we try to get patients completely off of prednisone, many patients will need to be maintained on low doses (5 to 10 mg every other day) for years or indefinitely."
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My own was 20mg very gradually moving to 60mg over 4 months. The slow ramp was due to a fear of pushing me into type 2 diabetes on the part of the neuro. I am not at type 2 diabetes, and now think I could just as well have gotten up to 60 much quicker--as it did fix my MG symptoms so I would say "marked improvement."
By the way, the confusion with immunosuppression and corticosteroids is somewhat explained at http://www.macalester.edu/academics/psychology/whathap/ubnrp/gravis/immunosuppression.html
Prednisone, as used for treatment of MG does act as an immunosuppresant along with other beneficial actions. Although it is considered a cortiosteroid and normally thought of for use in suppressing inflammation, it is does fit under the immunosuppressant classification too. So when I say immunosuppresants, I include most of the drugs we take for MG other than mestinon.
Schedule number 1: has some risk of startup exacerbation from prednisone
60-100 mg daily to start -- recommended 100 mg for adults for 2-4 weeks, then switch to alternating days 100 mg eventually tapering
Or Schedule 2: Less risk of startup exacerbation
start at 10-20 mg per day and increase by 5 mg every 3-5 days until target of 100 mg, then switch to alternate day 100 (taking 6-8 weeks to get to 100). Again, eventual tapering
quote;
"A study from the University of Virginia has provided very good data regarding the efficacy of prednisone in MG. In the treatment of 116 patients with prednisone, a marked improvement was seen in 52% (minor symptoms and return to activities of daily living), a moderate improvement in 15% (functional limitations), no improvement in 5%, and pharmacologic remission (asymptomatic on medication) in 28%. The mean time to maximum prednisone benefit was 5.5 months (range: 2 weeks to 6 years). This study also pointed out that only 14% of patients were able to be completely taken off of prednisone."
The above has 80% getting quite good results from prednisone only and in less than 6 months.
Tapering: "After improvement is achieved, the prednisone dose should be decreased. It is important not to taper prednisone too soon or too quickly. As with dose, there are no established guidelines for this. In general, patients can be maintained on 100 mg every other day for 2 to 4 months before tapering. It may take a week or two for deterioration to occur following a decrease in corticosteroid dose. Therefore, taper by only 5 mg per day every 2 weeks. When the prednisone dose is decreased to 20 mg every other day, taper even more slowly. Although we try to get patients completely off of prednisone, many patients will need to be maintained on low doses (5 to 10 mg every other day) for years or indefinitely."
***
My own was 20mg very gradually moving to 60mg over 4 months. The slow ramp was due to a fear of pushing me into type 2 diabetes on the part of the neuro. I am not at type 2 diabetes, and now think I could just as well have gotten up to 60 much quicker--as it did fix my MG symptoms so I would say "marked improvement."
By the way, the confusion with immunosuppression and corticosteroids is somewhat explained at http://www.macalester.edu/academics/psychology/whathap/ubnrp/gravis/immunosuppression.html
Prednisone, as used for treatment of MG does act as an immunosuppresant along with other beneficial actions. Although it is considered a cortiosteroid and normally thought of for use in suppressing inflammation, it is does fit under the immunosuppressant classification too. So when I say immunosuppresants, I include most of the drugs we take for MG other than mestinon.
I like to think that I follow "evidence based medicine" -- meaning high quality research has shown that something works better than something else. In reading about the treatments used for MG, a lot of things that are done truly have not been tested, or at least very well tested, but are used based on "anecdotal evidence" meaning people say that they do better with the treatment.
When I worked in medical research, we believed that "good research" was double blind studies--the patient and the doctor treated a large number of patients -- some with treatment a, some with control (placebo or treatment b), neither patients nor doctors knowing which person got a, b or nothing. Then at the end with each patient being evaluated and categorized as good results, poor, none..., a statistician opened the treatment type info and figured out if the treatment results matched any of the groups. Doctors and patients were too quick to want things to work if they knew they were getting something--what we call bias.
Well, to end this up, many of the treatments we take have not been evaluated very scientifically yet, so although the treatments may work, it has not been proved in a rigorous scientific study. Right now the thymectomy study is several years ongoing and still has not been completed to tell us if a preventative thymectomy is useful--even though smaller studies seem to show that, and of course it is done very often.
Back when I was in research in the digestive system, the biggest change came when it was found that most ulcers were caused by bacteria H Pylori infections--not by stress, diet, etc, and treatment was by antibiotics rather than lifestyle changes. Hundreds of years of medical thought and treatment went out the door because a brilliant young Australian Doc, Barry Marshall, found this out by a study that was later confirmed at many other places (Mayo too). Diet and stress reduction helped with the symptoms, but didn't get rid of the bacteria causing the problem.
Mestinon helps with the symptoms of MG--masking the problem of antibodies blocking/damaging/destroying our muscle-nerve connection. However, the antibodies can destroy them (although they do grow back if relieved from attack). Mestinon won't help much if they are destroyed.
I think that 25mg of prednisone seems conservative. It is a good starting place, but if you need that much mestinon, your neuro probably should consider a more aggressive effort to suppress the immune system. That is why I posted the original one--that says that a "standard" treatment is quite large amounts of prednisone early with mestinon to help you get through the period where the prednisone (or alternative) works to decrease the bad antibody attacks.
It is possible that the 25mg will work--just may take much longer. I think it is good to read about "standard" treatments and present them to our doctors when we think we are being under/over/mistreated.
Good Luck--and keep pushing on your doctor. If they don't hear from you their assumption is you are doing fine.