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...
I have been looking and reading about the various side effects of prednisone and am quite concerned... The doctor wanted me to start a small dose and build up, but I am scared of what I am learning. Can you share any side effects you have personally encountered? Has it truly been worth using??
you dont have to be scared, this drug is a corticoid steroid for inmune supression
the followings are the side effect that you can expect when you take it on high doses, 35mgs day for longer time than necessary
high blood pressure
mood swings
high bood sugars
cholesterol
insomnia
these are the mayors, but you have to discuse this problem with your neuro, since is the one whom prescribed the drugg
it is efficient,but you do not star low and go upi
you start high for no ote than 2 weeks then decrease to the minimum 5mg, every other day
i dont have any side effects residues, and feel great, i am able to perform my life quit allright
best of luck
Andre
Like you, Bluejay96, I was reluctant to take Prednisone. After my diagnosis, I elected to just take Cellcept and tough out the MG symptoms while waiting for the Cellcept to begin working. After 6 months of just Cellcept, I was still symptomatic, so the plasmapheresis was started. Unfortunately I developed an intolerable side effect to Cellcept after 8 months and had to discontinue and start all over again with Imuran. Knowing that it would take at least 6 months for the Imuran to start working, I then decided to go on Prednisone for quicker immunosuppression.
Has it been worth it? For me, even though I am having difficulty with my Prednisone taper, definitely yes. My big concern before going on Prednisone was that since I already have a bit of osteoporosis, I didn't want my bones to thin further. To address this, my endocrinologist arranged for me to have a Reclast infusion before starting. I have gained about 8 pounds, but I was slender to start with and feel so much better that I don't mind the extra weight. During my taper, I developed depression and have had to increase the dose of my antidepressant, citalopram (Celexa), but I was aware of the possibility of mood changes with Prednisone, so I didn't have to endure the depression for very long. Prednisone has significantly improved my MG symptoms, and although I may be one of the rare patients whose adrenals never recover full functionality, I am okay with that.
BluejayWhat are your concerns about taking Prednisone? Maybe we can give you information that will help you make a decision.
- Nan
Prednisone is certainly prescribed for many of us in the early days when the onset of MG is such that it needs to be suppressed/controlled quickly before too much damage is caused. However, we generally move on to steroid reducing drugs for all those reasons that make you worry and we are able to gradually reduce the Prednisone as those other drugs come into play - upwards of a year.
My recollection of the first year with MG was that it was generally unpleasant but unpleasant is a far better place to be than that initial worry you get when you stop working properly - slurred speech; closed eye(s); difficulty eating and so on. It was a rocky ride, but we all come out the other end.
Take care.
Peter
Prednisone is one of those miracle drugs that can leave a trail of problems behind. Most of the time we do start with prednisone, get our MG under control and then move on to a less troublesome immune suppression medication.
I took prednisone for 1 year, much of the time at high doses before tapering it off. It worked wonderfully, taking me from the hospital with breathing problems to almost normal functioning in 5 months or so. It would have worked much faster had not my neuro insisted I start low and gradually taper up over several months. However, even at the low doses, it gave me improvement and gave me back an almost normal life.
The side effects I had was 20 lbs of weight gain over the year, speeding up of my cataracts, higher blood pressure and higher blood sugar levels and some mood swings and some sleeplessness.
I weighed those side effects to being a basket case, and certainly decided the side effects were less troublesome. My neuro was aiming me to taper the prednisone as soon as it got MG under control and begin either cellcept or Imuran. They would have been much slower to work initially and possibly not as effective. But as I tapered off prednisone, I turned out to be one of the 15% who go into a medicine free remission so didn't need further immune suppression.
Mom took prednisone at about 10-15 mg per day from age 65 to her death at 91. She tolerated it well, with two probems that likely came from it -- type 2 diabetes and cataracts. Without it she was in very much pain from polymyalgia rheumatica; with it she could function almost normally and so enjoyed her life well and died at home still independent and active when her heart stopped while sleeping.
My advice, try the prednisone just as your doctor prescribes at the same time altering your diet to try to prevent weight gain, and get MG under control with it while also talking to your neuro about the long term alternative and maybe even starting that soon too. Many folks here seem to think cellcept has less side effects and works OK, although it may take a year to work.
The first week or two of prednisone can be accompanied by a sudden drop in functionality -- a reaction to prednisone, so most doctors try the first few weeks low before increasing it to higher levels that will work faster to get MG under control. I started at 20mg per day and gradually got up to 60mg per day.
For me, prednisone let me know that MG would not take over my life. With it I could function almost normally with MG. It was a miracle drug for me, and although I knew long term it wouldn't be good, short term it got me up and about and back to living.
Those of us who are or have taken prednisone long term have a love hate relationship with it.
The last point--if you take prednisone for more than 7 days, you start getting a dependence and so then have to taper off of it. And tapering is a slow, slow business that normally accompanies an alternative medication's rise in effectiveness.
I wrote extensively about my prednisone use when I was on it in a blog. You can see my experiences at this search -- however it comes up with the newest first as I am tapering off and below that earlier experiences. It includes songs and poetry about prednisone -- I like to think they were written while under the influence of prednisone ;=)
https://riverroadrambler.blogspot.com/search?q=prednisone
Good Luck
Russ
like to clarity a bit more in regard of prednisone
,
being a cortocoid steroid. hisuses are to control inflamation in the body, our body produce about 5 to 7 mgs of cortisol dayli. so the cprtisol given by prednisone is nothing more than a balnce to be able to fight infections, inflamations,
when i was in the hospital my first week with mg, i was put in a dayly doses of 200mgs dayli
because of the hi doses, was given 1 or 2 units of insulin by injection to ounter the events that prednisone may cause.
i soon i was released i started to drop it intil i reach my gloas 5mgs. and all every other day,
it took me 4 months, but what i seen, was that my body stabilized and all side effects dissapeared,
i have to thank my neuro foe the shots of insulin, as that prevented develloping diabetes.
as for the prednisone, i can swear to its effectivness, at the point that i am now i can and do skip couple of days or even a week, depending how my body react. without any problems
Nanosecond
i realy feel for you as you are in a dificult situation but hope for the best
best of luck
Andre
Nan, I think my main concerns are bone thinning (feet), shaking, hair thinning, weight gain, sleeplessness (which triggers migraines for me), tiredness (which is already an issue), and moodiness. Basically a lot, huh?
Living where we do, I feel like I am under house arrest to stay out of the summer heat (heat indexes up to 110). Just taking a nice warm bath can make it hard to breath.... And vision is affected, muscles twitch, etc. With my job, I will soon be required to be outside about 20 minutes twice a day for recesses. Sigh....
I truly appreciate everything you guys have shared. Good food for thought. I will definitely voice my concerns with the doctor at my next appointment in about a month and see what his long range plan is. I also began a more plant-based diet.
You have eased some of my fears.
At that point I had to go on 60 of prednisone. That did cause hair to come out
and serious mood swings and puffiness. 5 years later
I was able to get down and finally got to 7. At 30 of prednisone I was human.
I was fine for the last 5 or more years on low dose of prednisone along with cellcept. Recently I had a relapse. I had to go up to 50 of prednisone. to get rid of double vison and droopy eye. I am now on 40. No hair loss or problems. I do use melatonin to help sleep. At 50 I could only sleep 3-4 hours. You didn't share your symptoms. Is the plant based diet helping? If it isn't, I would quickly get on prednisone. We can have crisis early in disease because we don't yet know how bad it can get and quickly.
I have noticed I don't ache as much on a more vegetarian diet, but still have vision and breathing struggles at times. I figure it's time to try it and see.... I don't want to end up in crisis...... EVER.
It might take a bit of time to take effect. Are you on mestinon? If not you need that too. asap
I am so happy you did what you need to do. I sure wish I had this web site when I first got the disease. It would have changed my life.
Take care
Mestinon helps a lot too
Good days ahead..