Hello, I'm new to NeuroTalk. I am a 71 year old male, diagnosed with mild MG 4 years ago. I have been on 20 mg prednisone and 1500 mg mycophenolate for the past year or two. My baseline status has been balance issues, droopy eyelids, mild slurred speech. Six months ago I developed cataracts, three months ago a prolonged bout of bronchitis, and one month ago shingles on the head and eye (worst of all!)(I had the old shingles vaccine 9 years previous). For the eye irritation, I am treated with two different eye drops for comfort. For the head pain and nerve damage, 1500 mg gabapentin for comfort.
It seems to me that I must wait for my immune system to heal the eye irritation and reduce head/nerve pain. From what I read, this can take months and years, and the pain can return. Since my immune system obviously is weak, I worry how long this will continue. Shingles is a horrendous, life altering illness.
So, my questions are:
Does anyone have suggestions for dealing with the immediate shingles issues?
And also, does anyone have experience or advice about decreasing, changing, or eliminating my MG meds in order to strengthen my immune system? (I do plan to discuss this with my Neurologist soon.)
Thanks to all for any comments. Get the new shingles vaccine at age 50!

Hi, Cobb. Nice to meet you!

The most immediate thing you can do for shingles is to get some vitamin B12. That will help to heal the peripheral nerves that are damaged by that virus. I personally like the Jarrow Formula brand of Methylcobalamin (fancy name for B12 that goes right to work in the bloodstream). Unlike vitamins such as B6, a person can't really get too much of B12.

When I had shingles, I was already on B12 (have to take it forever due to B12 deficiency/damage). I then upped my dose to 2 x 5 mg (2 tablets) several times per day. Mine almost went to my eyes, and was starting to affect my brain. I only had a tingly sensation of the nerves, not pain like others report having. I attribute that to the B12.

Amazon.com: Jarrow Formulas Methylcobalamin (Methyl B12), Supports Brain Cells, 5 mcg, 6 Lozenges: Grocery & Gourmet Food

You may already have an existing B12 deficiency. That's very common! Vitamin D deficiencies are common as well. A primary doctor can test you for those. If you have numbness/tingling in your hands, face, or feet, and are tired, you might already have a B12 deficiency.

What eye drops are you on? Some of those can make MG worse.

Did you know that Neurontin/Gabapentin can make MG much worse in some people? Have you tried just Tylenol/acetaminophen?

There are other things you can do, dietary-wise, to help your immune system. Cut out sugars. Increase good proteins and green leafy vegetables. Drink those green drinks with tons of vitamins. Mushrooms have great antioxidant properties. Drink a lot of water. Sleep more! Try to cut out all stress (stress shortens telomeres, and that promotes aging of the immune system). Mrs D (savvy moderator) might have more suggestions about diet/supplements. But with all things, speak to your primary doctor first.

Only you and your neuro can figure out what you can do about decreasing the meds you're on. Pred is hard to come off of. Have you ever tried IVIG? That might not be a good idea while you have shingles, due to the risk of meningitis from IVIG. But some people do very well on that.

A doctor could also check your IgA, IgG, etc. to see how your immune system is fighting off germs. A low level of one of those is also a reason to have IVIG, other than when someone is in a crisis.

While on Pred, taking flax or fish oil, or eating good oils, keeps the gel coating of the stomach healthy. Pred is an anti-prostaglandin, while good oils are pro-prostaglandins. Has a doctor checked your metabolic panel to see if there have been any effects on albumin, electrolytes, etc.?

Infections are rough on MG. And the meds given for shingles can make a person very sleepy. Just try to pamper yourself as much as possible.

I'm not really a proponent of the shingles vaccine, but that's me. There really isn't a lot of good evidence to support that the vaccine helps keep people from getting shingles, from the virus that is already inside of people who have had chicken pox. And a vaccine, due to the adjuvants and other ingredients such as neomycin, squalene, aluminum hydroxide, barium, formaldehyde, and thimerosal (mercury), can mess with one's immune system even more! What's ironic is that immune suppressed people can get chicken pox again. So you need to stay away from others who might have that, or other viral or bacterial infections.

The good news is that you can improve your immune system. Speak to both your primary doctor and neurologist about that and how to change up your current meds. I really hope you have relief soon from shingles.

When you go anywhere, you really need to wear a mask. I make sure that I do that. I don't care what I look like to others. I'd rather not have pneumonia!

I hope you feel better soon!

Annie

Unfortunately, Mrs D has suffered a stroke and it is uncertain when, or if she will be returning to the forums.

Thank you for telling us. I had no idea. My prayers go out to her and her loved ones.

First of all, sorry to hear that Mrs. D has had a stroke. Have read many of her posts and was always impressed by the depth of her knowledge, and the clarity of her thinking. May she enjoy a speedy, and excellent recovery. ...Annie, Because I have always had serious doubts concerning the efficacy of Shingles vaccinations, I have never had one. However, a vaccine which has recently become available warrants, IMHO, consideration. Would like your thoughts on Shingrix. Hope the link comes through, the info it contains is important. ...Best, Patrick Shingrix Shingles Vaccination | What You Should Know | CDC

Patrick, I don't want to muck up Cobb's post. I think if you do the research, you will find an answer for yourself. I certainly can't tell anyone what to do!

https://www.fda.gov/downloads/biolog.../ucm581605.pdf

What I can say is . . . genetically engineered Chinese hamster ovary cells?

Annie

Annie, thanks... Was familiar with the info you posted. Just searching for what others may be thinking about Shingrix. Best Wishes, Patrick