grateful for all the input
 

I am so grateful for all the input on this site. We have a wonderful Neuro well worth the travel we have to do but my husband not getting much relief of symptoms with his mestinon, 15mg prednisone and 3000mg cellcept ...because of hearing from people on the site we were armed with info when we saw him last...as it turned out didn't need to be...when he walked in his immediate comment was that he could see we needed to get more aggressive with treatment...so he bumped him up to 60mg prednisone for 2 weeks then will try slowly backing off....Also because of this site i know that some people see an improvement after 4 days....the drs can give you this info BUT it is good to hear it from people who are dealing with it directly.

Has your husband had IVIG yet? I am on my 3rd round without any results. I take Imuran and Mestinon. I think there is a version of MG called refractory which is very resistive to treatment.
Mike

Camsgrams, I can't say I've given any input - was sort of in a funk for awhile due to my dog dying. Heck, still am.

Ditto on what Mike said. Have tried plasmapheresis? Was he antibody positive?

Steroids can make someone temporarily get worse before they get better. Everyone responds differently. Be very careful how quickly they lower a dose or by how much. Look for signs of adrenal fatigue, such as sweating, increased tiredness, increased weakness, etc.

Have they checked out other things like his thyroid, vitamin B12, cortisol or electrolytes? Sometimes it's not the MG but something else making things worse. His internist can help out with all that.

Do watch for signs of infection while on Pred. Infections can be "subclinical" and not be really obvious. That's what happens when the immune system is suppressed.

I hope he continues to get better.

Annie

yes he did have 2 rounds of IVIG once before his thymectomy and one awhile after...we can't say it helped alot. yes he was positive for antibodies.. B12 ok thyroid ok electolytes ok.when they weaned him off his prednisone before it was very slow...i noticed the weakening but "thought" his body would readjust....now i know different. since they started him on 60mg of prednisone 2 days ago he has seen a slight improvement...very slight but we will take it....unfortunately the azathioprine worked quickly but his liver did not like it..cellcept not working as well but we are still hopeful. his symptoms are all ocular.

I'm confused. Your husband only has ocular MG and they are throwing that many drugs at him? How old is he?

Is his liver in bad shape? The liver is the "clearing house" of all things you put in the body. Yes, the kidneys help too but if his liver is bad, why all of the drugs? And did they test him for the TPMT enzyme BEFORE they gave him Imuran/Azathioprine? Maybe that's why he couldn't tolerate the Imuran.

http://www.labtestsonline.org/unders...tpmt/test.html

Do you have copies of the blood tests they've done? For example, if a person's B12 is 400 and they're having symptoms of a neuropathy, chances are they need B12 (sublingual).

Has he had breathing tests to make sure his MG is not generalized? Not very many people have only ocular MG.

Sorry if I'm putting out too much info but I'm wondering if they are doing too much for your husband. It doesn't quite make sense, given what you've said.

The drugs he is on can come with some significant side effects and can even cause things like Pred induced diabetes.

I hope his doctors can figure out what is best for him.

Annie