[huntress]

Hi everyone sorry I am not on here much. Much going on. I am currently taking azathioprine which is generic for Imuran. A daily alternate of Prednisone 50 then 10mg. I am on also mestinon which since lowering my prednisone from 60/20 this fall to the 50/10 I need more mestinon it seems. I have been on azathioprine since last May 8th. Still waiting to see the big change. If it will kick in more. Praying to God daily for healing.

Question is. Almost every other day or every 2 days sometimes I get this overwhelming weak feeling throughout my who body. I get nauseated. Stomach churning. Just overall unwell feeling so much I have to lye down and wait it out. Last sometimes only a few hours while other days it can last almost most of the day. But then it just goes away. Temp sometimes rises to 99.5° but goes back down once that feeling is gone. Does anyone else experience this on and off sick like feeling?
thanks

Lisa

[bny806]

I don't have these symptoms, but I would have to wonder if the alternating of your predisone doses is to blame....
If you are on high doses of steriod for prolonged periods your adrenals get used to this... abruptly lowering can cause many of the symptoms you describe, I believe including the elevated temp.. I wonder if your adrenals are sensitive to this high, then low, then high dose... they are a bit confused? Just the first thought that comes to my mind...

[limpy]

I have been having that same type of thing, but I'm not on prednisone. I am nauseous, but not constantly. But it is a daily occurrence. I have tried just about everything and saltine crackers are about all that works for me. I think mine is the gastroparesis I developed since getting Lems.
It could be your prednisone because it is very hard on your stomach. Are you taking it with food? Hope you get it sorted out soon.

[AnnieB3]

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

[huntress]

Originally Posted by AnnieB3

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.

[AnnieB3]

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

[huntress]

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...

[AnnieB3]

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