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.
This site needs some kind of index
but I quess just stated as prednisone is good.
Ann
Of course you can always put a treatment in the search engine. If it says says the search engine is "down" just try again, you don't have to wait. b.
Will, I think each person's choice will be very different.
It is hard to pick a treatment for MG as they all have good and bad sides. A relatively readable summary can be found at
http://www.myasthenia.org.au/html/treatments.htm
I think prednisone and mestinon are the starter meds for most treatment plans as they get you functional about as fast as possible--maybe with a few IVIG treatments sprinkled in when we are at our worst early on.
Then, depending on how prednisone is working for you (and how low of a dose you can get by on), alternatives may be introduced to be taken with prednisone--as the alternatives seem to take longer to become effective on their own.
My neuro says many people do well on prednisone at a low dose indefinitely, and others (potentially me) have problems with blood sugar, bone thinning and so on and may be better on Imuran or Cellcept (the much more expensive newer drug).
However, prednisone is still the primary drug for most of the folks in drug controlled MG remission group--and it is very inexpensive too.
IVIG and PLEX are outrageously expensive (like $15,000 every month or two) and tie you to a hospital/clinic for a few days each round and have their own problems. They are essential in an MG crisis, but one has to commit to being tethered to the machines if you choose this as a long term treatment. I don't like the idea of having to plan trips or events around the treatments. There is some info that for some folks the treatments lose their efficacy over time.
I am trying to control the prednisone side effects by exercise, diet and supplements and other meds--so far successfully with the hope that as i get down to lowest effective dose, most of these will be minor side effects and I can live with prednisone as long as I need it.
As I keep reminding you and myself, Mom, 91, has been on prednisone for 30 years and is still quite active and independent, living alone at her home; something that would have been impossible without it. Twenty years into it she got diabetes type 2 and cataracts--however the cataracts were removed,and diabetes is under control. However, that may have happened to her anyway.
Taking Prednisone as MN story teller Garrison Keilor might say,"it could be worse." (that means it isn't too bad, vs "it could be better." which in MN speak means pretty bad). However it is a heck of a lot better than full blown untreated MG--something I am only a few months past.
Will...I am curious....what is your treatment?
Ann
I haven't quite figured out what my new normal physical condition with treatment will be, having been gradually getting weaker in the year or two before diagnosis, I probably don't remember what normal is.
I was pretty much hyper on higher prednisone doses over 40. 30 lets me sleep and keeps most of the MG problems away, but I want to know what happens at the low end--or if I can get by without it someday. After I figure that out in a few more months (?), my doctors and i will decide if taking that much prednisone will mess me up too much so that I should switch to something else. Patience is a virtue here!
After taking prednisone the white cells are sequestered in the bone marrow for up to 8 hrs or so and then come back out. With Immuran and Cellcept you get a reduction in the number of cells as they cease being replaced because of the toxic effects of the drugs. Only when you get up to about 100mgs prednisone does significant apoptosis occur and you see some cells exploding. This does not occur on the doses of 40mgs or less that are normally employed where the anergy inducing and T-regulation induing effects are relied on. So if you take normal doses of prednisone every other day, you may wish to consider yourself immunosuppressed for about 8 of the 48 hours since circulating cells are reduced for that sort of period even if they are not killed. Maybe the reason some schools use the agressive high dose approach is to rely on apoptosis leading to a real immunosupresion in the short term.
The Virginia group publication is unusual in that it employs a set of patients that were at the more difficult treatment end of the range and that they use six month data rather than 1 year data and dont classifly the results into the usual groupings becasue they used their own "minor symptoms" deffinition. Other schools generally use 1 year figures and find that about half the patients are in remission or minimal manifestations at one year, ie at one year half the patients on prednisone have no symptoms of which they are aware. The data for drug free remission seems to be the same evrywhere and is roughly 15%. Half patients get to maintanience doses of 7.5mgs or less. The publications dont normally tell you what the "or less" means as neurologists seem to loose interest once the dose gets to 7.5mgs but then, they are not the ones to suffer the residual side effects that are theoretically possible.
The only clinical trials on using Cellcept to reduce prednisone doses in MG failed to show any benefit at all from using Cellcept but that may have been because they used the wrong end point which was reduction to 7.5mgs prednisone. if they had taken it lower it is possible (but unproven) they would have seen something but they all seem to assume there are no side effets below that majic and completely unscientifically obtained number and so stop looking to reduce it further (the side effect with the lowest cut off is cataract which is below 10mg every other day). On the other hand the clinical trials on Immuran showed a clear cut benefit in reducing prednisone doses which is why it is still the first line immunosupressant to add to prednisone. Some neurologists appear to use Cellcept becase it is easier than having to do the enzyme checks to make sure the patient is not in the group that suffers from side effects to Immuran even though there is no actual proof that Cellcept works as a steroid sparing agent.
Be well,