Hello,

I have MG, but not the ocular kind. Male, mid-forties. No thymus issues.

At any rate, Mestinon did zilch for me -- it did not help my shortness of breath or weak shoulders. I had dermatitis last month, and took two rounds of prednisone over the course of about 6 weeks. The highest I got was 40 mg per day. It was one of those 3-week taper packs. I felt best when my dose was between 20-40 mg.

The prednisone improved my quality of life. Muscle and general fatigue gone, energy up, and sleep much, much better. I concluded my second round of prednisone, but after a few weeks, my MG symptoms seemed to come back a little bit.

I had my 6-month followup today with my neurologist and told him my experiences. He gave me a script for 10 mg of prednisone every other day.

It seems most folks taper up to a dose of 30-60 mg of prednisone, then begin a slow taper to a lower, every other day dose. Is starting treatment fresh on a 10 mg EOD maintenance dose a good way to do it, too?

Is it worth my time to try this maintenance dose, or should I be pressing for a more traditional taper up/down before the maintenance dose is initiated?

Thanks!

I would say it would be worth a try, but like you, I don't know how useful it would be. When I've started pred (and I've been on/off it several times in the last 14 years) I always started at 10 mg a day for one week, then 20 and on up to the point that the symptoms abated. I've been as high as 60, but now I kind of refuse to go over 20 mg due to side effects.

Anyway, once stable, I immediately go to eod dosing, as that immediately halves side effects. From there I've done various tapers, but find, unfortunately, that I do best on a small (5-10 mg) eod dosing. I do, however, have a history of severe refractory MG. You may have a different experience.

Good luck!

I don't know how helpfull this will be for you but here is my experience. I have been sick for a long time but became so ill 7yrs ago that I could not get out of bed to go to work. during all these years anytime I was on prednisone I felt so much better, grant it they were always the pred dose packs, I think it is 10 days tapered down. I was dx with mg in Jan. of this year, in March I was given 50mg pred every day, the first week I felt like a champ, then it spireled out of control and i haven't been able to gain any ground since. My mg is the worst it has ever been, all those years I just knew pred was the answer, now i don't know if there is an answer. I wish you well and hope you have nothing but a perfect experience with the pred.

I am currently tapering off pregnisone. It did well for me and I did not have too many side effects. But there are a lot of possible severe side-effects with steroids. Please read up on them first too make sure it is worth the risk. There are several options for MG treatment. Mestinon just temporarily relieves symptoms. For me it just takes the edge off the disease so I am more functional It is not a cure, it will never give you a remission.

Besides steroids, there are other immunosuppressants with less side effects like cellcept and imuran. There is also IVIG and plasmaphoresis. Perhaps you should read up on all of them before asking for more steroids. When the neuro put me on steroids ( for 6 months) his comment was 'a short term dose of steroids for 6 months usually does not cause long-term problems in most people'. I get nervous when doctors start using multiple qualifiers like "ususally" and "most people".

I already have bad osteopenia, recent fractures, high blood sugar, fluid retention and diarhea and pregnisone can make them worse. The part I find most annoying is the insomnia. MG needs rest to recover and I am not getting that on pregnisone. ALthough pregnisone did stabilize my symptoms, they are more predicable and I have fewer really bad days. It did improve my mood and relieve the pain in my muscles. I am scheduled to get IVIG in 2 weeks. I hope they put me on cellcept at the next visit. I also want a thymectomy. I have no tumors but the statistics show that almost 80% of MGer have hyperplasia of the thymus. 30% of MGers go into remission after thymectomy and almost all show notable improvement.

kathie

"Medical Speak" ... There are very few absolutes in medicine, anymore.
Notice I didn't say..."There are NO absolutes..."

1955 - Doctor: You have the flu.

1980 - Doctor: You have the current strain of influenza.

2013 - Doctor: You likely have influenza, however, that is not to say that it isn't a mild case food poisoning, which may or may not be as long-lasting in it's symptoms, however, most people are likely to confuse the two, and usually, but not always, a small percentage of the population.....