Lisa, Did your doctors test you for the TPMT enzyme BEFORE they put you on Imuran?

http://www.southend.nhs.uk/pathology...l-transferase/

"TPMT provides the major catabolic pathway for these drugs. If the enzyme is absent in the patient there will be an 'over-dosing' effect, frequently resulting in severe bone marrow depression, also nausea."

http://www.rheumatology.org/Practice...rine_(Imuran)/

I think over-suppression of your immune system, even if you have the TMPT enzyme, is also a concern. More is not always better.

Call your prescribing doctor!

Annie

Yeah my neuro did that TPMT test before he put me on imuran. I actuality was doing really good kn 60/20 alternate days of prednisone back kn the fall. Now since the Prednisone drop. He tried having me alternate 50/0 but I couldn't do it. Got too weak. So I started taking 10mg prednisone and it has helped just I get thews periods of time where my temp rises to 99° and I get nauseated and sick feeling along with weakness. I failed the strength test miserbly last neuro appointment so he ordered a IVIG which still waiting for the insurance to authorize. I tell ya if its not 1 thong its another.

Okay, good. At least let him know about the temp and nausea.

Are you drinking enough water? You can get a low-grade temp with dehydration as well.

The drugs you are on can wreak havoc on the stomach, as Limpy mentioned. Prednisone is an anti-prostaglandin. What it does is reduce the gel coating of the stomach. It might be a good idea to take flax, fish, or krill oil while on it to help with that, but talk to your PCP before you do.

Do they also have you taking calcium and vitamin D daily?

I think you really need to have a discussion with your primary doctor about these issues. Sometimes they will think of things that a speciality doctor won't. And they might want to do a CBC, electrolytes, or other tests that shows how your body is adjusting to the medications.

Limpy, Have you been tested for celiac disease? I haven't been here for awhile—what are you taking for the LEMS? 3,4 DAP? Mestinon would help with gastroparesis. Higher fiber foods might help, too. What's also possible is that you have a lack of stomach acid instead of too much. A person needs acetylcholine to make stomach acid. Do you have a good primary doctor to discuss this with? Those little signs might seem like no big deal but when you have LEMS, you really need to keep in touch with your PCP. Its variable nature and the risk for small cell lung cancer, as I'm sure you're aware of, should be discussed with a PCP, as well as your neuro.

Whatever is causing the stomach upset, don't dismiss it, okay?

bny806, I agree that that dosing schedule is a bit whack. At this point, the adrenals have probably stopped working or are only minimally working. That's why it's so hard to get off of Pred.

Good luck with balancing the meds, Lisa!

Annie

Thanks so much. My neuro has my taking caltrate +D for
Calcium supplements. I also take krill oil daily. Going to buy an omega 3 next. Also take B complex daily. A ferrous sulfate for aniema which is getting better now blood test have shown. I take 1 a day of iron. I try to drink an ensure with my prednisone and azathioprine mornings it helps coat the stomach. Then again I take famotidine for heartburn and acid relic. Could it be that has caused not enough stomach acid. My primary tried putting me on omnepazoli but my neuro said no to it. Mestinon has never bothered me. Before all the other meds I only took mestinon and mestinon timespan. Then aspiration pnuemonia led me into a crisis. They hit me with 60mg prednisone. 5 IVIGs. Then 10 plex to bring back my swallowing. This fall I felt good. I mean I still had flares and symptoms but not nauseated and sick every other night. I was on the same meds only 60/20 prednisone alternate days.
Less mestinon but tapering made me take an extra 1 1/2 a day.Hoping to get that IVIG and be able to wean off.prednisone more. Thanks again. I will talk to my neuro.
I try to drink enough water but one never knows. I do drink at least half a cup of coconut water daily...

Did you know that coconut milk has a diuretic effect?! Meaning that it can dehydrate you?

I think you should talk to a primary doctor about some basic chemistry testing, etc. and the long-term antacid effects.

Antacids can cause you to have low calcium, anemia, low vitamin B12 from not digesting/absorbing it and low protein.

Drugs are useful but there are other solutions to health issues—like finding a CAUSE for a symptom before throwing a drug at it.

Unfortunately, when you have one autoimmune disease, you have to be aware that you could have more. Don't chalk up all new symptoms to MG or the drugs you're on. I have MG, celiac disease, and other misc. junk.

I'm glad you have good doctors to talk to!

Annie

Annie, I am so glad you started posting again. I have missed your insightful input.
No, I haven't been tested for celiac. Hadn't really thought of it because I am dealing with so many other things. I am, however seeing my GI doctor Tuesday, who is absolutely awesome. He has been more help to me than any of my other doctors put together.
I have always had digestive issues, but they have really ramped up since Lems and especially since I had to have a feeding tube placed in October. It never healed and gave me tremendous pain and I had it removed last month since swallowing was much better following rituxan in December.

I figured out that because I was taking Prilosec while I had the peg tube, it was causing a lot of the problem due to not enough acid, but I have been off of it since my wound finally healed this month.
Yes, I am on 3,4 Dap and mestinon, but they are also very unfriendly to my stomach.
My digestive system is constantly in an uproar, very noisy and sometimes I just feel ill and feverish. I am definitely going to tell GI about all of it.
Sorry for taking over this post, but I thought it was just me that was having all these GI issues.

Limpy, We can never rule out anything, can we? Stupid AI diseases! If your tissues aren't healing, have you been tested for a B12 deficiency? Other AI issues or diabetes? Do you have enough good bacteria? Think about it. Stomach upset can happen while on antacids! They get rid of good bacteria. So maybe think about adding acidophilus, if you haven't done that already. I'm sorry you've been through so much.

Ditto for you, Lisa.

Annie