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...
Hello group!
I joined this forum recently wanting to learn more about my condition and how to live with it utilizing the minimum medication.
First and foremost, I seem to have a mild dose in comparison to most stories I've read on here. I can still function in every way I ever did, just not so vigorously. I'll keep the drawn out story to my Journal entry for those who like a bit of historical context.
That said, what brings me to write here today is the symptom of poor circulation in my lower body half (legs, ankles & feet). They're freezing ... almost always. The other things I've noticed which are new, is the cramping. My hands, feet and toes ... it's like they have a mind of their own.
I started taking prednisone Feb 6th this year. I tapered up to 20MG (5MG increment each week) and have been at 20MG for 2+ weeks.
At the starting of the 5th week, my eyes returned to normal (no droop, no double vision ... which was my goal), and my formerly lost strength for weightlifting is returning back surprisingly quickly.
Given the mild condition I seem to have and my body's sensitivity to medications, I speculate that I probably could have stopped at 15MG of prednisone to get the benefits I'm getting.
What I also think is that this medication has caused a spike in my blood sugar and I'm seeing the onset of self induced diabetes a symptom of which is poor circulation.
I've got a call in to my new Nero doctor, but his staff will take time to book an appointment to ask a question.
What I want to know (if I decide to drop back down 5mg on my own), has anyone else experienced/read about this type of reaction so soon, and on such a low dose of prednisone?
Thanks, and good to be here.
SH.
I joined this forum recently wanting to learn more about my condition and how to live with it utilizing the minimum medication.
First and foremost, I seem to have a mild dose in comparison to most stories I've read on here. I can still function in every way I ever did, just not so vigorously. I'll keep the drawn out story to my Journal entry for those who like a bit of historical context.
That said, what brings me to write here today is the symptom of poor circulation in my lower body half (legs, ankles & feet). They're freezing ... almost always. The other things I've noticed which are new, is the cramping. My hands, feet and toes ... it's like they have a mind of their own.
I started taking prednisone Feb 6th this year. I tapered up to 20MG (5MG increment each week) and have been at 20MG for 2+ weeks.
At the starting of the 5th week, my eyes returned to normal (no droop, no double vision ... which was my goal), and my formerly lost strength for weightlifting is returning back surprisingly quickly.
Given the mild condition I seem to have and my body's sensitivity to medications, I speculate that I probably could have stopped at 15MG of prednisone to get the benefits I'm getting.
What I also think is that this medication has caused a spike in my blood sugar and I'm seeing the onset of self induced diabetes a symptom of which is poor circulation.
I've got a call in to my new Nero doctor, but his staff will take time to book an appointment to ask a question.
What I want to know (if I decide to drop back down 5mg on my own), has anyone else experienced/read about this type of reaction so soon, and on such a low dose of prednisone?
Thanks, and good to be here.
SH.
I have only been diagnosed with MG since July 2015 so I am far from the most experienced. It started with the drooping eye lid thing like so many others. I started seeing a neuro who didn't want to even start me on medicine until something got worse. But that soon happened and I started taking Mestinon as I was no longer able to swallow , chew or talk well at times. The Mestinon did help with the throat and jaw issues but did absolutely nothing for the eyes. There were plenty of side effects from the Mestinon as most on here can relate to.
Then the eyes got worse and I became almost afraid to drive which is bad considering that I still work. The neuro started me right out on 20 MG of prednisone. That had some effect as I was able to see a little better. Then the neuro increased me to 20 MG twice a day. I can see pretty well now but the side effects are as you describe. I have a lot of hand and leg cramps, I also have real bad night sweats and chills and I don't sleep hardly at all. My blood sugar is all over the place. I was also started on Imuran 3 weeks ago but I'm told that it can take a long time to feel any effect from it.
I just spent 5 days in the hospital with some other complications but I also received 5 days worth of IVIG infusions while I was there. I called and asked if I could taper back some on the prednisone but the neuro wont approve it until she sees me on 4/4. I sure hope to back off to as little as 20 MG once a day again.
That's about all I can share with you as of this time.
Good luck with it.
Steelplayer
Good tip about applying ice to the eyes.
Thanks for the quick response steelplayer. It confirmed my suspicions with what little I've read.
This morning I took 15MG of prednisone instead of the prescribed 20. I'm thinking had I stopped when I tapered up to 15, I'd have received the same benefit. Until my Nero calls back and approves, scolds, I'll continue with 15 as he originally wanted me to do 8 weeks on 20 and re-evaluate.
Also ... common sense must be applied ... if my legs are cold, and my hands and feet are cramping, then it's starting to smell like the blood sugar is way high and I have a bit of that self inflicted diabetes happening (but I'll get a blood test to figure that out).
So, I'll start on a lower carb diet, and ... sob ... kill off alcohol or at least cut it down to the occasional glass of wine while at a social function.
My short term goal then will be to have proper circulation restored to my legs without losing the improvements I'm enjoying with my eyes.
I'll add Ginkgo Biloba to my ever growing list of supplements and have scheduled an acupuncture appointment for tomorrow.
Again, I hardly feel worthy to post here given what other people have to live with, but I sure do appreciate finally having someone to talk to about this ... up until now, the few I've reached out to are too old to comprehend, or are kind of in denial that I have legitimate health problems.
If anybody sees any risks in my plan, please let me know.
Thanks,
SH
We are all here to support each other ; there are no stupid questions, and it does not matter the status of the person asking the question (Veteran or Rookie)
My hands and feet (not necessarily legs) are freezing, pretty much most of the Winter time.
I do not take Prednisone nor any immune-suppressants, only Mestinon.
Perhaps it's just part of the autoimmune process. Come the warmer months my extremities are better, but still seem cooler than the rest of my core body parts.
That's all I got. Take Care :) Chris
I would urge people not to change their treatment plan without talking to the neurologist first. While sometimes their instructions seem generic, they are customizing the treatment to your needs. That being said, we know our own bodies the best, and we have an obligation to communicate our thoughts with the doctor.
Prednisone has to be tapered very slowly, especially at doses under 20 mg per day. When you take it for more than about 2 weeks, your adrenal glands shut down (not needed as the prednisone does its thing instead). So when you try to taper it below about 15, your adrenals need to start up gradually and take over again--and they can be slow to do that. Look up adrenal insufficiency to see the symptoms.
It is difficult to get timely appointments with neurologists who specialize in mg, so you should work out a relationship with the neuro's staff (nurse, assistant, or whomever works on the doc's team) so you have someone to call directly and ask about changes in meds. Mine contacted the neuro during the day and called me back. Then I managed to use the online consulting route with my neuro -- worked best for me as I got a response within a day to my questions or problems without telephone tag.
Also, a strategy you should ask your doctor about in tapering is alternate day doses. That is often easier to do.
Good Luck
Russ
I did do this via his assistant so it was call, get called back, question, and she got back to me again after email correspondence with Nero (all within a day).
I had a lul and forgot to ask about the Ginkgo biloba, but matters not, I suppose I should alter one thing at a time to ensure I know which one is the one that helped or didn't.
I did go to acupuncture though. I have to tell, I'm very lucky as I have a 70ish year old traditional Asian ... the real deal, who works on me for 90 minutes, never leaves the room and while I'm a pin cushion, he's applying thumbs on pressure points and sharing in conversation ... life.
I will rue the day when he finally retires and I'm reduced to a voodoo doll, dagged and abandoned ... done in 15 minutes and ineffective.
Long rant/story short, I came in with cold legs, freezing feet (for a week straight) and left with warm feet and legs. Can't dispute a treatment means that began 5000 years ago.
More to come ... it's nice to share ... finally.
SH
My biggest problem with Prednisone is insomnia, although a sleep aid sometimes helps.
For those of you who get leg cramps from Prednisone you might try 100 mg of Magnesium just before bedtime. This dose isn't large enough to exacerbate your MG, and has worked for me.
I'll wait and see if my eyes close/bug out as 1 week might not be enough to make a judgement call.
I do have another question / concern ... weight gain.
Now I'm pretty controlled (well, sometimes), and can limit my consumption to what I've eaten for years regardless how hungry. I've always been an eat to live, not live to eat type.
However, I do seem to be retaining a little water.
Another naughty thing I'm doing ... that I need to address is alcohol. I've not cut down yet ... still will have a few in the night when with friends that like that kind of thing.
Again, I don't have a very serious dose of MG, only enough for eye problems and a general fatigue.
Any advice like "No booze because ..." or "Low carbs because ..." would be greatly appreciated.
Thanks,
SH
Those are my two biggest problems at the time. I am lucky if I can get 3 to 4 hours of sleep a night. I also wake up a lot with leg cramps and must get up and try and "walk it off'. I also get a lot of hand and finger cramps. I just turned 66 and still want to work a while longer especially with this medical issue and insurance coverage.
I just made a short business trip and was making the 6 hour return drive back and I had to stop several times along side of the road and get out and walk due to leg cramps.
I am currently on 20 MG of prednisone twice a day. I see my neuro on the 4th and I hope she will start to taper the prednisone back a little. I just had my first 5 infusions of IVIG 2 weeks ago and they started me on Imuran 4 weeks ago.
Does the Magnesium really help. If so, I need to look in to it.
Thanks