Steroids and MG
 

Hello, everyone....I'm frustrated because my brother has had MG for years and he has refused steroid treatment. Now, he plans to have his amalgam fillings replaced, thinking that his MG is caused by mercury poisoning. He's lost about 30 pounds (he needed to lose weight) because he has trouble chewing.
My husband and I have been trying for over a year to get him to consider steroid treatment, but he says he's afraid of the side effects, especially diabetes.

Thanks for "listening/reading".

The second day of starting Prednisone my ptosis, double vision and swallowing problems diminished to almost completely gone.

scrubbs

I am also a fan of prednisone, but your brother will have to find his own way, I'm afraid. Getting rid of the mercury fillings is a good idea, but he needs to know that will in all likelihood not reverse the MG.

First let me start by saying that meds affect each of us differently. That being said you can see the first 2 posters like prednisone BUT it has given me fits. I won't go into details unless you want them. I am now weaning off but will take at least another year. The only advice I can offer is try it out.
Mike

I already have a terrible time keeping my blood pressure under control and my blood sugar is bordering on high. I am very concerned that if I try to take prednisone for any length of time, it will complicate both of those issues. I did take it for a badly sprained ankle that resulted from me falling down some steps and it was wonderful for that. I only took it a few days.

When I first came down with MG, I had a neurologist that didn't have many other MG patients. That Dr that put me on Prednisone. I'll admit, the symptoms went away almost immediately. However, what happened was they slowly came back and the Dr had to up my dose of prednisone for the symptoms to go away. Then after a while, I had to up my dose again. This was a vicious cycle. By the end, I wasy taking 60 mg every other day and at the end, my symptoms were as bad as they ever were. But I also had many other problems associated with high levels of prednisone. I left that neurologist and went to another neurologist who spent 80% of his time on only two types of diseases; MG, and ALS. He weaned me off the steroids and put me on cellcept. I also tried IVIG which helped. I got better and didn't have the side effects from Steroids. But I still had lots of MG symptoms.

Then about 18 months ago I decided to do more research on my own and take my health in my hands. I ate much better, virtually no processed foods, lots of veggies, lots of salads, very few carbs (other then those that come in vegetables or fruit). I take lots of vitamins, Vit A, B,C,D,E, K, multi, pantethine, pantothenic acid, B6, . Also, lots of other supplements like Fish oil, borage oil, flax seed oil, probiotics, DHEA, pregnenolone, Calcium AEP, Beta Carotene, Garlic, selenium, licorice and astralagus (I'm sure I missed a few). I've lost a decent amount of weight, (I too was overweight). I exercise more now (can easily do 3 miles on the treadmill).

Overall, my symptoms of MG are gone. I still take the cellcept, but my next goal is to go to the Dr and work on slowly weaning myself off of that drug. I'm hoping to reduce from my current 2 (500 mg) in the AM and 2 (500 mg) in the PM, to 500 mg (3x per day) then down to twice per day etc etc.

So Although I appreciate you wanting to help your brother I suggest taking prednisone is not a good long term treatment. Great for a stop gap problem. Good luck with your brother.

That's funny. My doctor didn't have many MG patients either and I'm pretty sure he was treating out of a text book. He said the next step was to have open chest surgery and get my thymus removed. I insisted on steroids first, to stabilize the condition, but he wouldn't consider it until my thymus was removed. The surgeon I found do to the procedure, had me switch to his neuro, an MG expert, who put me on steroids pretty quickly.

I have taken prednisone for about 2 1/2 years because of double vision. It is the only thing that has corrected that problem. I first experienced double vision shortly after my thymetomy in the hospital and was given prednisone and also three IVIG treatments for that problem and the spasms I was experiencing (I have both MG and SPS).

After the treatment in the hospital (sorry I don't recall how long I was given prednisone) I had no problem with vision until about 6 months later around the holidays. It was a stressful time for me and I guess that brought on the double vision again. My neuro tried two rounds of IVIG (over a two months period) with no change and I ended up in the hospital again because I couldn't eat I was so sick at my stomach. They worked me up to 60 mg a day and in about four days my vision corrected. I have been trying to reduce the dosage over the last 7 months (because I've changed neurologist and he is more concerned with my medications than the X-neuro) and am now taking 15 mg every other day. So far no changes in my vision and I'm hoping to be able to reduce it even more and stop having to take it at all.

As far as side effects, I am now diagnosed with osteoporosis which is probably a result of taking prednisone for two years.

As already posted, it works differently on people and I hope you find a solution to your problem. Good luck.

Southern Bell
:grouphug:

To All Who Responded to MGrelative...
 

:) Thank you, all!! Regardless, of what you all wrote, it was helpful, to read your comments and about your experiences. One thing I forgot to mention is that he's seen about a dozen neurologists, so he isn't lacking for medical advice.

Seeking different Dr's opinion is a good thing. I went through 4 before I settled on one.
Mike