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...
hey mg community,
For the past two months I’ve been treated for mg, I’m currently taking 20 mg of prednisone a day. It’s not helping, I’ve had no symptom reduction and no increase in energy. My specialist wants to taper my dose down, does anyone know where things are heading? Are they going to increase my dose or?
Welcome to the group.
Sorry you have MG and that your treatment hasn't started to work yet.
My own experience was that it took me about 5 months to see prednisone work. During that time I took a lot of Mestinon (pyridostigmine) to give me the daily boost needed to get by.
My neuro started me on 20mg too. I took that for probably 2 months gradually ramping up so that by 3 months I was at 60mg per day. I think 20 mg per day may work, but it takes longer than higher doses -- at least in my case.
Usually a neuro will start you on a smaller dose (20 for example) and then keep pushing it higher based on body weight.
Prednisone has, as you probably already know, side effects. The higher the dose the greater they are. So the usual way it is administered -- smaller dose to see how your body reacts; if OK, then larger dose until MG symptoms get under control, then tapering down to the lowest effective dose. This is often spread out over a whole year and prednisone may be needed indefinitely to keep MG at bay.
The common alternatives, Cellcept and Imuran (brand names) work, but they can take up to a year or so to be effective. Prednisone at high doses is fastest of the immune suppressing meds. They sometimes are started at the same time as prednisone so they will help keep mg away as you taper prednisone -- and try to get on something less bothersome than prednisone.
I found the high doses of prednisone (50-60) sort of made me hyperactive and so I got a lot more done than normal (including doing things while others were sleeping and I was awake). My neuro said that 20mg would probably push away my MG symptoms if taken long enough, but I wanted it to go away faster and so persuaded her to increase the dose.
With MG, we have to think both long term treatment and short term. Short term is the mestinon and high dose prednisone, and some times if we are very sick, blood additives or blood filtering (we say IVIG or PLEX) for a month of improved function.
Long term is what immune system suppressant works and we can tolerate. Then we keep trying to figure out the minimum effective dose for us.
Every MG person has a different path though MG. Your neuro seems to have put you on the most often used one and most often successful one as a start -- prednisone and Mestinon. By the way, to function while prednisone was starting, I took 6-8 Mestinon pills a day. You take one and it gives you functionality for about 4 hours and then wears off.
Every time you visit your doctor, you need to report not only how you are doing, but also insist that you be treated to get the level of functionality you want. Most of us would like normal as our goal, and that can be achieved by most of us with the right treatment -- so that MG can be a little like diabetes, there, but treatable. When we read the stats on MG patients. we see that about 80% are treatable with standard meds over time. Another 20% or so don't respond to the normal treatments and need special other treatments.
And of course, the other health conditions we have often complicate treatment of MG with particular medications.
There is a great deal of good information on the internet on MG. I would start with https://myasthenia.org/ The more you read about MG from reputable sources the better you can participate in your treatment choices.
Good Luck
Russ
A recent study showed that removing the thymus gland on folks with ACHR+ MG helps in folks with normal thymus glands too. The new version of the surgery (robotic) is much less invasive than the old way of opening the chest. I think most younger folks have this recommended when they are in early treatment. The research study said that people who had the thymectomy needed less prednisone, and that some of them went into remission.
MG tends to be a disease of younger women and older men, but of course there are folks of all ages. The treatment for younger women needs to be tailored to your goals. So in planning that with your neuro, you need to state your goals -- i.e raise children, have a physical job, etc. The medications you take can then be tailored to best suit your goals.
The difficult part of MG is realizing that for most folks this in not going away and we will need to live with it. Folks choose various levels of what that means. For me it was I want to be as normal as possible and be active too, so I opted to be "over treated" slightly. I was 65 when diagnosed, so didn't worry so much about long term problems with the meds as a younger person would.
We always have hope that we might go into remission (I am in med free remission now), or that a better medication will come along or even one that cures MG. But for now, it is one of those chronic conditions we learn to live with. In this group are folks who are doing well with treatment and some who are not -- they are called "refractory" and have a very difficult time figuring out what works.
Good Luck
Russ
i am very surprised tha your neuro as not given mestodone as it is the main
med for mg,
without you loose total control of what mg may do in your every day life
prednisone is for supresing your inmune system and for control of infections
a diagree on the prior statment of russ with the remavl of the thimus
the thymus is a glnd wich has to do with your respiratory system, and even inflamed it can be controled
i am generalize bulbar and my thymus was a bit inflamned, but got under control
i am a beliver that if it is not broken it doesnt not need to be fixed, and taken it out doesnt mean
speak with your neuro extensively and try to find the proper path, you the only one one can as has to control our desease, you will have limitations but you will be allright and able to performe thru life
do not despair as you are not alone
Sorry to hear that you have MG and especially so when so young (relatively). Let me add that I feel that Russ gave you good factual advice and references, rather than personal opinion. I would advise anyone with MG to beware of opinions that you may read on forums such as this, They may be well-meaning, but opinion, based on fact, is the preserve of your Doctor. Bottom line, of course, is that your ongoing treatment is a matter between you and your Neurologist. That said it is important that you make yourself aware of the various treatments and understand the effect they have on you. You have obviously come up to speed with Mestinon and that is probably the only medication that you will ever need to adjust, to suit yourself on a daily basis.
Two months is not very long in the initial journey from diagnosis to stability and it can be a rocky ride in those early days as the medication is tried and adjusted to match you and your developing symptoms.
Suffice it to say that removal of the thymus, generally in younger patients with MG is a recognised and successful treatment. If your Neurologist considers it an option for you then there are tests and of course discussions with you that need to take place.
This might help https://medicalxpress.com/news/2019-01-myasthenia-gravis-surgery-thymus-gland.html
Take care
Peter
TJ from CA
thanks for your reply to kaittlin and the response contradicting what i said by peter in regard of the thymus
it was about time somebody beside me making since of that subject, i had it a bit enlarged due to inflamation but my neuro got it pretty fast normal again.
and this was the big reason that i mentioned that when something is not broken, no need to fix it.
we know that mestidone is not a cure or treatment, but it is the only drug for mg. in the market that is safe
Andre
I think treatment plans are highly individualized, but I can share mine! ;)
I too started prednisone after 2 months on 60 mg of mestinon 5 times a day (30 mg prednisone daily to start)
It induced myasthenic crisis in a week and I was in intensive care to receive IVIG for respiratory failure.
I am still on 30 mg daily and back home very weak.
The plan is to up the prednisone to 1 mg/ kg in my case 50 mg daily. I see my neurologist next week and if I am strong enough we will do this. Gradually taper off the mestinon as the prednisone starts to work and keep the 50 mg for three months. Then we begin a slow taper. If the symptoms come back, I will start Imuran an immune suppressor that takes 3 to 6 months to kick in. All of the neurologists I saw in hospital said not to worry, 30 mg of prednisone is not high enough to help much with the symptoms yet even if it messed me up enough to cause a flare.
So maybe ask if 20 mg is considered enough for you? And if you tried it long enough? Fyi I weigh 130 lb so you would need to be really tiny to need only 20 mg.
I hope you get better soon!
Xxx
Sonya
I far preferred the side effects of prednisone than the problems of MG. And so I took it, found that it got rid of my MG symptoms, and then worked on getting down to the lowest ongoing dose that worked. My neuro wanted me to take 20mg at first, but that did nothing and so we kept increasing it and at 60 mg it worked.
There is really no medication we can take that is side effect free, although there are others that are less problematic than prednisone, just they may take longer to work.