Hello Emma, sorry to hear the troubles and douts that you have with prednisone, i dont know if your doctor precibed that amount for 4 month it is a low dose but very uncomun. doses are given to take an amount of let say 35 mgs. daily for 10 days then decresase by 5 every weeks untill you reach the minimun which is 5 mgs. every other day, the if you decide to exit , corticoid stay's in your body for about 48hrs.. of all corticoid steroids is the least harmfull, the sides effect and this is in hih doses for long time, are hi blood sugars,hi blood pressure, mode swings, and for me quick temper. but unfortunalty is necessary for control of mg, pains and tribulations., i just came out of my worst relapse was on ivg plasma 180mgs. of mestidon, 45 mgs os predinisone 6 month ago, now i am at 30 mgs, mestidone and 5 mgs of prednisone every other day , this the amount of cortisol that our body needs for better fonction. what you should do is have a extended conversation and plan with your neuro, for proper administration of your meds. best of luck Andre(fighter)

Hi Andre!

Ive been on 30 mg and tapered off to 7,5, which i have been on the last 4 months.

My question is how long people stay on such low doses before they need to increase the dose again due to muscluar weakness coming back? You write that you are on 5 mg every other day.. Do you know how long it is assumed that the good effect will last? How long does it take before a person become weaker again and need more prednisone?

Im waiting to see my neurologist who is very skilled but shes off duty right now.. thats why im doing my own research:)

Thanks so much for your reply. I really hope you will keep getting better!!
/Emma

the time that tou may stay in prednisone depend of 2 things, 1) your body the way it addapt to steroids. 2) if they start you at a proper dose and decrease, you be able to control what you want to do, with mg. they are 3 prime things to be done and done right, 1) you may have to have ivg ans sequel to replace the dead neuros, this is the base of mg, as the neuros dies your body can fuction right, it is not a cure, becaus mg as no cure but remission, and 2) the mestidone and prednisone are fo your body to control the damages,
i have written a blog with the name of CLARIFICATION OF MG FOR ALL MG'S please read it you will understand all what is going on then give me a feedback, best of luck Andre(fighter)

There is never a clear answer to questions of how much prednisone (or any drug) is enough or how long it works or takes etc., as we all seem to be different and even our MG levels fluctuate.

My neuro, who has many MG patients, told me when we were talking about prednisone long term that I would likely have to take about 15-20 mg of prednisone long term to keep MG under control. Some patients could get by with less and some had to take more. She thought if I could get down to about 15mg and then stay at that, prednisone would be a possible long term medication. However if I had to take more to keep MG under control, I probably should switch to something else (cellcept or imuran most likely).

The problem is that everything seems to work in slow motion -- the drugs are slow to act and slow to stop acting; the immune system is slow to start up making bad antibodies and slow to quit making them and so on. She explained that the way we try to establish baseline treatment levels is to make every change a small dosage change, and to make them very gradually and then wait and wait to see what happens.

She thought that making a change of 5 mg or prednisone per day should be evaluated over a month or maybe two, especially as we were getting down under 20mg where MG might come back. She thought that taking a little too much was better than taking too little as our goal was to be mostly rid of MG symptoms overall, and to use Mestinon just when MG seem to flare rather than increasing prednisone, but that sometimes prednisone increases would be necessary, but so slow acting as to be difficult to know if they were actually working.

Anyway, she counseled thinking very long term and very incremental -- as it is a life long balancing act.

I did something she didn't like very much. I had a hunch I was in remission about a year into MG--as I didn't have any MG symptoms anymore, didn't take Mestinon anymore but was at about 20 mg of prednisone per day and so told her I wanted to try going off prednisone rather than just tapering it, and do it somewhat faster than the usual tapering process or what she recommended. I was impatient to see if my hunch was right

Only about 15% of MG patients go into remission, she told me and without prednisone in a few months you could be back with life threatening MG as you were when you came to me (I was in the hospital with breathing problems when I started with her).

It turned out I was in full remission and getting off prednisone over a few months only brought the problems of adrenal insufficiency rather than MG symptoms (I could tell the difference because pain killers got rid of the adrenal problems). She told me I really should have just tapered very gradually and found out the same thing over 6 months rather than the month I took. I agree with her now, but i credit prednisone for fuzzy thinking rather than my own natural foolishness ;-)

With the decision to get off of prednisone, I also knew that if MG came back, I would immediately begin taking high doses again to stave it off. One of the folks who used to post here said his strategy was to take prednisone at 60mg per day for about a week and then quit and wait for it to clear the MG and get several months OK and then hit it again when the first symptoms re-appeared. His theory was if he took a week of prednisone he could immediately quit without any withdrawal problems, and the week of heavy doses would hit his immune system rapidly and clear the antibody production and stop it for months. He said it worked for him, and I often thought I would try it if MG returned. I asked my neuro about that strategy, and she said she hadn't tried it with MG, but other autoimmune system disease treatments were done this way at times. MS patients sometimes get a high dose prednisone IV for a week or so and then no more to bring MS problems under control, and not get hooked on prednisone.

I am not really giving you this as advice, but it is what I have thought about doing for myself, and I surely wouldn't act on it without talking to my neuro to see what she thinks before doing it, as you should talk to your neuro too about your symptoms returning and your worries.

I like to be an active participant in my treatment as it is me that is having the problems and my tendency is to act rather than wait -- not always so good, but certainly interesting to see what happens ;-)

Good Luck
Russ

Hi Emma, i apologies for my explanations , maybe, where unclear, with mg, all is trial and error untill you find the proper dosage of your meds.,i myself iam a firm beleiver on alternative meds, and i am lucky to have a great neuro whom works with me. fully, iam in charge of the way i want to go, but , let me advise you a vey important factor, with mg, you have to be ry carefull of what meds you are taken, as to control mg is mestidone and prednisone,other meds like ymuran,metratesrate,cellcept and other, are a no go for mg,d you should look at the site drugs.com write the name of the drugs and you will be surprised of the dangerous side effect that most give.
mg is the oldest autoinmune disease in the word, it was noticed in a asian country in 1625-45, and fully discovered in 1672 by thomas willis 400 years that we are at the mercy of inept ineficient medical and farmacology, we are are own practitioners, guinea pigs, doctors ect, luckaly we have groups that can by their experiences, give pieces and bits of imformation for all
we just have to be firm and explitive with our doctors and not be afraid to let them know which way they should stand,
best of luck Andre(fighter)

Everyone wouldn't respond the same way to medicines. I responded to a particular combination of medicines 7 years after initial diagnosis, after my disease progressed. The neurologist would vary the dose depending on how the body responds to the drug. It would also depend on whether there are other issues associated with the immune system in addition to MG.

I had to take dexamethasone for four months and when there was improvement in my MG symptoms, the neurologist replaced the steroid immunosuppressant with Mycophenolate sodium. He said that since i am very young, taking steroids for a very long time could cause other health complications. When i used to take dexamethasone, i developed type2 diabetes. And after stopping the steroid i had severe withdrawal symptoms like depression, anxiety and bad appetite.