anyone feel?
 

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

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...

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.

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

I do have other autoimmunes, so they tell me I am complicated. I get tested for b12 and I take it sublingually daily because I am missing the part of my stomach that releases intrinsic factor.
You gave me an idea when you said that mestinon helped with gastroparesis so I bumped it up just a bit yesterday and today and the symptoms were much better. No nausea! Still noisy, but I can live with that. These diseases have such a learning curve!
I have been using kefir yogurt to try to restore good bacteria. My mind continues to race trying to figure everything out. Thank you for your suggestions.

Limpy - I am also plaqued by GI issues since this all started.. I feel like at times i have malabsorption. I do have a sibling with Crohns, but they don't think i have that - they are pointing more likely to celiac.. i have been strictly gluten free for 3 years now... though i do test it every few months and regret it... It's hard to have that on top of everything else! Do you get starving frequently??? I feel like I am going to starve to death when my GI symptoms flare! I had horrible gastroparesis and hyperemesis with pregnancy - they coudln't figure out what the problem was... ick.. lots of vomiting then!
I'm due for IVIG In three days and look like my face is almost paralyzed- my eyelids are in my vision and I have a snarl for a smile.... fun times! :)

Lots of times I can't tell if my stomach is upset because I need to eat or because I shouldn't eat. I find myself going to the cabinets and fridge a lot to try to find something soothing. But yesterday and today have been much better with a little extra mestinon. Do you get a lot of diarrhea ? Embarrassing, I know, but another fun element. Sometimes I can't leave the house because I have to stay near the bathroom.
I am going to see what the GI doctor says tomorrow before I try anything else.

I, too, have a host of GI problems. Have you been tested for SIBO? It is a simple breath test that will show if you are excreting methane, hydrogen or both. Methane is commonly associated w constipation vs hydrogen which tends to have more of a diarrhetic effect (thou I'm positive for both methane and hydrogen but my chief complaint is ZERO motility).

There is so much to be learned about the brain bowel connection and with all the work being done on the microbiome I wouldn't be at all surprised if diseases like MG could be cured or at least mitigated by reconstituting gut flora.

Btw, I also have celiac and showed positive antibodies for pernicious anemia so, again, I firmly believe they are connected.

Good luck!

Sorry, I know TMI - but yes, i have not diarrhea but loose stools.. when I first got sick - I went from normal once a day or every other day to up to 30 times a day... and STARVING.. eating everything in sight, but lost TONS of weight.. I was sooo thin, it was gross . I felt so awful, and everyone thought surly it was celiac - onset post partum and after medical procedure gone wrong/blood transfusion stress.. it all happened so fast! By the time they tested me and did my colonoscopy/endoscopy I had been gluten free for about 2 weeks, the tests were negative. I have family members with it, so I just adhere to the diet anyways.. it can be miserable

Limpy, You might be lactose intolerant, too. ;) Not from the Kefir, though. Do you have any other dairy products?

Lisa, Are you feeling any better?

I went to my awesome GI doctor today and told him what I have been experiencing. He told me that I have gastroparesis due to my weak muscles in my digestive system and will probably always be a problem.
He said I may possibly have bacterial overgrowth, so he put me on an antibiotic just in case. I mentioned what Annie said about celiac, so he agreed to test me for that.
I really don't think I have it, but got the test to make sure. It doesn't matter what I eat, besides saltines, my stomach doesn't like it.
He also told me to go back on omeorazole and to start taking fiber and he will see me back in a month. I have his email address, though in case I need him before then.

Well, an antibiotic will destroy the good bacteria in your gut even more. Most likely it's the antacid that is causing trouble. Please seriously consider a pill form of acidophilus, since you don't have the added sugar from that which also wreaks havoc in the gut. You can get one that doesn't need refrigerating, which are just as good as the ones that do (look at the bottle description).

It also might be that you have food sensitivities or allergies you aren't aware of, that could be causing a "leaky gut." Have you ever seen an allergist?

Have you ever wrote your symptoms in a journal? When they happen, how soon after eating (and the foods), etc.

This is a little off your topic, Lisa, but it might help you, too.

Annie

Actually, that is why I went off the Prilosec. It seemed that my symptoms were escalated when I was on it. Was on it when I had a peg tube, and the acid that was running out on my flesh from the hole was excruciatingly painful. After I got the tube out and finally got it healed, I stopped the Prilosec. I had also been taking a lot if tums, due to serious stomach pain waking me up at night. I stopped the tums as well, mainly because I was taking in too much magnesium.

Yes, I have seen an allergist, but not recently. I was told I didn't have true allergies but sensitivities to environment. Allergies do run in my family and all my kids have them.

I will check into the acidophilus. Sounds better than antibiotics.