My husband was diagnosed about a year ago with MG, and has been taking half a Mestinon 3 times per day after meals, and IVIG, at first 4 infusions about a month apart. He had a series of 4 or 5 of these with the doctor ordering more following blood work at the end of each series. This last time he just ordered a series of two IVIG before returning for an office visit. His blood had improved in all areas except hemoglobin. Initially he wanted my husband to start prednisone, but he declined. Now he wants him to begin Imuran.

I have been reading old posts about Imuran. Does anyone have any positive things to say about it? I wonder if the doctor is getting ready to stop the IVIG and wants the Imuran to be ready to replace those infusions in 6 months or so. We are both nervous about all the side effects.

He sees the derm every 3 months and he always finds several cancers to burn off--in addition, he's had several Mohs surgeries and one Melanoma, and is afraid of a bad cancer reaction if he starts Imuran. Any suggestions or advice? My husband is 84 and in good health otherwise (even though he's lost 40 pounds since this MG thing began).

Hi, Joano. Wow, since he's already had cancer, I doubt a hematologist/oncologist would recommend an immunosuppressant.

Is he doing okay on the Mestinon/IVIG? How does he do if Mestinon is taken more often? Has he talked to his neuro about increasing the dose slightly?

I'm just wondering what the reasoning is behind trying Imuran at age 84.

Why is his hemoglobin down? Did his primary doctor or oncologist find a reason for that?

Has he had his B12, vitamin D, thyroid, celiac panel, etc. checked? You don't have to answer this, but has he had a colonoscopy?

I would consult with an oncologist or his dermatologist about being more immunosuppressed! It's pretty risky when he's already had cancer.

Anything else going on with his health? Any other symptoms?

I hope he's okay and that you guys can make the best decisions with the appropriate doctors. Sometimes neuros feel the need to do something, anything for patients. They get so frustrated when they can't "fix" us.

Quality of life is an important factor at age 84.

Good luck!

Annie

Annie, thanks for your reply. He has been taking 5000 mcg. methylcobalamin for probably 10 years, also 500 mg. D3 daily for probably 4 years. His doctor told him he could increase the mestinon if he needed more, but he's doing fine with just half a pill after each meal. He hasn't had a colonoscopy but he doesn't have a problem. He hasn't been checked for celiac, but we eat gluten free and lots of veggies because I feel better not eating wheat. We don't eat sugar either (I have PN.)

He's been checked by the doctor at the VA, and he's the one who told him about his blood, but didn't offer any explanation, or do any more testing. I got him some grape nuts cereal because it's high in iron, so maybe it's helping--he hasn't had another blood test since we found out it was low.

He gets up around 5:30 every morning, still goes to work at a business he and our son operate, comes home around 4:00, has an engineering business on the side he works at part-time, and probably 2-3 days per week he looks at jobs requiring engineering advice. He naps before dinner, if home, after dinner til about 9:00, goes to bed about midnight, and starts all over again the next day. He's always been kinda hyper (and I'm not--I go to bed before he does, and get up later than he does, but don't nap in the evenings). Anyway, he's pretty healthy otherwise even though he's lost a lot of strength since this MG started.

His primary doctor checks him every six months, and as he was losing weight, he just chalked it up to old age. The neurologist treats his own mother for MG, and has her on prednisone and Imuran, so I guess that's what he has found to be the best treatment. My husband didn't want to take prednisone after reading how most people here feel about it. And he doesn't want to take Imuran either after reading about the side effects.

Apparently the IVIG was helping bring his other numbers up but not the hemoglobin. He has a lot of "urgency" after the IVIG and a head ache the first day, but then he's back to normal after that. His main problems are tired during the day and loss of strength. His eyes don't droop any more either

I'll have him check with the derm about the Imuran since he sees her so often. I was unable to find any positive comments in reading old postings on this website. Thanks for your comments--I'm going to print them for him to read.

Joano, I tolerate Imuran pretty well but I'm also 30 years younger than your husband. I have to agree with Annie, if it ain't broke, don't fix it! If your neuro insists then bloodwork for liver function and a CBC are in order before starting Imuran. Jim

Thanks, Jim, I'm going to show him your reply too.

You're welcome. Let me know if there's more that I can help you with. Jim

[QUOTE=Joano;1134745]
He gets up around 5:30 every morning, still goes to work at a business he and our son operate, comes home around 4:00, has an engineering business on the side he works at part-time, and probably 2-3 days per week he looks at jobs requiring engineering advice. He naps before dinner, if home, after dinner til about 9:00, goes to bed about midnight, and starts all over again the next day. He's always been kinda hyper (and I'm not--I go to bed before he does, and get up later than he does, but don't nap in the evenings). Anyway, he's pretty healthy otherwise even though he's lost a lot of strength since this MG started. ]

Wow! He is amazing!!!

He does get a lot done inspite of MG. In his favor is the couch when he goes to work with my son (and he says his dad doesn't mind taking a nap whenever he's tired), how many people can do this when they work for someone else! But he is interested in a lot of things, and this helps keep him going.