Hi,

I was diagnosed last year with MG. I also have Lupus. My acetylcholine test was 242. I tried Mestinon last year and it gave me such bad cramps in my arm that I couldn't raise my arm at all, so I D/C'd the Mestinon. But, wouldn't the Mestinon have helped if I have MG? I take Imuran and Plaquenil (for the Lupus).

Has anyone heard of these Mestinon side effects? My main symptom is muscle weakness and fatigue. I do have a weak eye muscle, but not Ptosis.

Thank you for your help......

Hi. How much Mestinon did you take, and how close together? It may have been too much. When I take 60mg (one pill) I get weaker. But if I take 30mg, I get stronger. Mestinon is like that. The proper dose varies from person to person.

Abby

Not that I have anything to add....I take a total of 300 mg of Mestinon a day... my acetylcholine test was 239 (so the same CRAZY HIGH NUMBER AS YOU!!!) I have not "met" anyone with high numbers like mine and just glad to have finally met someone...I am new to the diagnosis (March of this year was the positive results)...I have just started getting a few leg cramps and arm cramps...wasn't sure if it is Mestinon or something else!!!

Abby,

I started with 60mg 3x day and went to half of that. I then waited a couple of days and took 1x day. Maybe I'll try again after I see the doctor next month. Thank goodness IVIG really works for me. I'm starting another 6 months of that.

Thanks for your reply. My neorologist hadn't seen such high numbers, either! Especially since I have been on Imuran for several years. Anyway, he said that higher numbers don't necessarily mean more serious MG symptoms, which is fine with me!

Hi, TexasRose. Does your neuro know that Plaquenil has some immunosuppressive qualities as well?

Is your pain well controlled with lupus or are you on pain meds? The reason I'm asking is that the anti-inflammatory drugs tend to reduce the gel coating in the stomach that we all have. That can leave you open for more gastric distress. Do you take a daily fish or flax supplement or eat fish? Or nuts, which have omega 3's too to help keep the gel coating in good shape.

You could try a trial of Mestinon syrup. You can titrate it to a smaller dose and then go up gradually. Also, the liquid absorbs more easily and quickly. 1 ml. = 12 mg. You could start there and gradually increase to see if your body gets used to it and what dose is optimum for you. Then you could always use the tablets on a regular basis.

It can be a little hard to have the syrup both due to cost and to portability issues. So it depends upon your insurance and your daily schedule. I use the syrup and really like the flexibility in dosing. I have no gastric side effects at all but that could be just me and not the syrup formula.

What we need to make stomach acid are gastrin, histamine and acetylcholine. So when you up your acetylcholine, you can up the amount of stomach acid you make. That's why they say to take Mestinon with a little food. I think it helps to understand what effect a drug has on your body, not only on your muscles!

I hope you can find the right combo that works for you.

Annie

Annie,

Thanks for your reply. I'm not sure what my neuro thinks about the Plaquenil. I see him this month and I'll ask.

I do take Nexium 2x day for reflux and stomach "irritation." That's interesting about Plaquenil and stomach acid. I would love to get off Nexium. I have heard it should be taken for a short term and I have been on it for years. I was diagnosed with osteopenia last year and I read that proton pump inhibitors can cause thinning of the bones. I don't need that!

I don't take much for pain. I started Prednisone recently because I have had finger joint pain for the past month. But, I don't have muscle pain very much, except when I took the Mestinon.

I don't take Omegas all the time but do eat fish every week.

I will ask my neuro about the Mestinon liquid this month.

Thank you for all your information!

I want to make a clarification. It's not Plaquenil that reduces the gel coating of the stomach but anti-inflammatories like Ibuprofen.

Antacids and acid blockers are my hot button! The cascade of problems that happen due to them is unforgivable. Most people do not have too much stomach acid and we need that acid for so many things. We need it to digest our food. It prompts the release of other enzymes to digest food. It fights bad bacteria and keeps it from building up in the lower GI tract.

You can end up with a deficiency of iron, protein, calcium and B12 (get those checked!). You can get reactive hypoglycemia from an artificial "dumping" syndrome due to food not being digested properly and dumping into the small intestines. That leads to malabsorption of nutrients. Food can putrefy in the gut which can lead to leaky gut and more autoimmune problems.

So one drug can lead to multiple health issues and more drugs. And don't think for one minute that the drug companies don't know that!

I'm glad you don't have a lot of pain with your lupus. It's not an easy disease.

I don't know if your neuro will know much about Plaquenil since they don't normally prescribe it. But just so he is aware because too much immunosuppression isn't good either.

Have you been tested for celiac disease? Do you know WHY you had stomach "irritation." Gastritis is inflammation of the stomach and taking Nexium can actually make things worse. Did you ever see a gastroenterologist to figure out why?

Sorry, I'm always full of questions. I hope you can get things figured out and do what's right for you. Keep your rheumy in the loop too. Good luck.

Annie