Oh wow! somewhat of an improvement. My partner(Steven)has only been diagnosed a short time ago. His symptoms are not too severe YET! Do they get worse, depending on medications? He has been on pred 80mgs a day and mestonin. 60mg 6x day he says he feels weaker since he started the Pred. but nuero says thats normal when you first take it. Do you feel thats true? We live in NH a close proximity to Boston and Nh doctors are OK but I feel he needs to go to a neuromuscular doctor or at least someone who is more in tune with this desease. I cant make the decision for him. His doctor is knowledgeable but I dont feel he is experienced enough.

Hi! Welcome to the forum.

Both of you can get more info at these websites.

www.maysthenia.org
www.mdausa.org

There are some drugs that can make MG worse (look at the 1st site). Being outside in the heat or getting overheated by exercising, having an infection, or a hot shower, can make someone with MG much worse.

Pred can make someone temporarily better before they get worse. Tell him to watch the salt intake! People on Pred can have fluid retention.

Some protein shakes are as good, if not better, than Boost. www.iherb.com has some good ones (rice as well as milk or soy proteins).

Yes, some people with MG do work. I'm not one of them, but I can't do the drugs other than Mestinon.

Exercising is not a great idea right now. It sounds as though he isn't exactly stable and he should wait until he knows how his MG will respond to treatment. Those resistance bands (with handles) or exercise chairs do actually work to build strength. He can do fewer reps and do them earlier in the day. Exercising at home means no travel time, no germs to come in contact with, and no "socializing," which can make MG worse. Because his muscles are now weaker, he won't be able to do what he did before (if he did lift weights). And overuse of muscles will now come on more quickly and he could have muscles cramping or spasming sooner. Having a fan blowing while exercising helps keep the body from heating up, too.

I'm sorry about your failed spinal fusion. A friend of mine went through that, too.

Since Pred is an anti-prostaglandin, he might want to take flax or fish or some other type of omega 3 oil (they contain good prostaglandins). They will keep the gel coating of the stomach in good shape, which Pred tends to thin out.

He's on a fairly high dose of Pred. Did the neuro give him any kind of taper schedule? Was he given IV Solu-Medrol in the hospital (that's standard)? Pred can help with a crisis, but it comes with a boatload of side effects and is extraordinarily difficult to withdraw from, as these guys have said.

It couldn't hurt to have a consult in Boston. They could make recommendations and send them to his regular neuro. That's done a lot with MG patients.

If he has any breathing issues where he can't breathe in or out well, that's an emergency and he needs to dial 911. That's also the case if he can't swallow or can't move well (generally weak).

A pulmonologist is a good doctor to have on the team. They can periodically check on the strength of the chest wall muscles. It's good to know a baseline so that the doctor can know how worse he might get. MIP and MEP are MG-specific breathing tests that should be done.

Does your partner have any other conditions? Pred can make diabetes worse or can bring it on. Also, a lot of MGers also have other autoimmune diseases such as thyroid (Grave's, etc.), pernicious anemia, celiac disease, some clotting disorders such as antiphospholipid antibody syndrome (APS), etc.

What else can we help with?

There's a lot to learn about MG. Unfortunately, many doctors either don't know the information or don't have the time to talk about it. There are some MG groups in certain states, which I think the MG site has listed (haven't been there in a while).

He's lucky he has you watching out for him. He needs to learn as much as he can, though, such as don't push MG or it will push back.

I hope he'll find the right balance of meds and lifestyle.

Annie

Doc is weaning him off 80mgs of pred a day he is now on 40 every other day. Today he was put on Imuran 50mgs. I read the side effects. It seems that no matter what meds a person is put on the side effects are sometimes not worth it. Has anyone ever taken Imuran and if so what have been the results? Thanks Trish

Yes I was on it for 12 months and lost a bunch of weight due to nausea. My Dr and I both feel it was working. After my body got rid of the Imuran I felt like I was 21 again. That only lasted a couple of weeks. I hope Imuran works for him. I'm now on Cellcept and just sorta stable. Haven't had to have IVIG for a year now so it must be helping. I'm almost off Prednison after 5 years. Please remember we are all different and each of us react different to each drug. I also take mestinon daily but appears to have little effect.
Mike

Hi Havnt posted in a while. Steven my partner has MG I have said that in other posts. His Dr is weaning him off Pred and he is takig 40mg every other day along wth now Imuran. Since the Imuran he is experiencing sharp quick tingling pain in his hands and on the side of his face. He also feels quick rapid fluttering behind his eyes. He does not know if its from the Imuran. Has anyone felt this effects? I worry everyday about him. He is not released to go back to work and I do not believe he ever will. The pred is making me dislike him right now he is not his regular self. HELP!

So, they started the Imuran at the same time they went to 40 mg. of Pred every other day?!!!

This topic makes me nuts. Going from 40 mg. of Pred to zero the next day—after someone has been on it for a while—makes a patient basically go into an adrenal "drop" or crisis on the zero days!!!

Adrenal glands don't "work" after someone has been on Pred for a relatively long period of time (could be even a month). Then someone can have all of the symptoms of an adrenal crisis (which can be life threatening), such as sweating, extreme fatigue, irritability, etc.

Did Steven's doctor do the TPMT test BEFORE he put him on Imuran?!! If not, he should have and needs to do it ASAP. Some people cannot take Imuran due to lacking TPMT activity.

http://emedicine.medscape.com/article/1829596-overview

I hope Steven will contact his neuro tomorrow and discuss ALL of this!

And he also might have a low calcium or other electrolyte. Does he take vitamin D and calcium daily, due to the Pred? What about omega 3s due to the Pred?

I hope he'll be okay.

Annie

Yes the Imuran was started when he reduced the pred from 80mg a day to 40mg every other day. He does have sweating, fatigue and he is very very very snappy and flys off the handle with almost everything. What is TPMT test?
Also do you know of any sharp quick pain in hands and face? I did ask but you might have not remembered to address it. Fluttering behind the eyes? Could this be the Imuran?

We have an appointment with neuromuscul but not until Feburary. Specialist are hard to get in to see. She is at Lahey Clinic in /burlington Ma.

He takes D,calcium and I will get him on Fish oil.

Thank you so much for your response. Look forward to another. Trish

My thought is you can not wait until Feb. The taper strategy from pred should be addressed immediately ... if not with prescribing doc, then with your GP or an endocrinologist. It sounds way too aggressive and could be the cause of all you describe. If it were me, I'd start with an opinion from an endocrinologist on the pred taper.

We do not have a choice when we can get into neuromuscular. You all know how that works its wait, wait, wait. We have an endocrinologist but he just biopsied his thyroid for some nodules. He is fully disgusted being on pred and now after reading Annies' reply I want the imuran issue figured out. This is all new to us and we need all the advice we can get.

As Sue said, you do NOT need a neurologist to address these issues!!

Do you have a primary doctor? If so, then go to them immediately. Tell them that Steven is having a severe drop in adrenal function every other day! It's an emergency, you know. People have been known to go into a coma (not that he will, but it's possible).

An endocrinologist would be best, but time is of the essence here. Who cares if the endo just saw Steven! You can make as many appointments with a specialist that are needed!

If your primary doctor doesn't address the Pred issue, then he needs to see someone in an emergency room. Yeah, it's that serious. And the idiot neurologist is in legal jeopardy from doing this, because he is causing harm to Steven!!! Don't be too hard on him, however, because many doctors are clueless about this topic (which is astounding).

And Steven, you cannot help yourself during that severe of a drop in Pred. Those moods you're having are literally unstoppable when adrenal function tanks. It's similar to when blood glucose is low or other various medical conditions such as that. So don't beat up on yourself over it.

That is a separate issue from the TPMT.

If you have the TPMT gene, then your liver cannot metabolize the Imuran. Read the article I posted. This is a more straightforward article.

http://labtestsonline.org/understand...tpmt/tab/test/

A primary doctor can test for that, too! It's a simple blood test.

Steven doesn't have to have fish oil. Walnuts are good, flax seed/oil capsules, krill oil, etc. Just eating fish will help!

I really hope you guys get this taken care of right away!!


Annie

BTW, there is ALWAYS a choice when it comes to medical care. You can at least call the neuro tomorrow and leave a message. But do not wait for them to respond, because Steven needs help—like a month ago.