[Douglas F Young]

I’m not convinced that thymectomy should be quite such an automatic response to the onset of MG. This article emphasizes the safety of the procedure, but an important question is whether it is justified for the individual. I was diagnosed at 67 (10 years ago) and once of the first responses to the diagnosis was a scan of my thymus gland. My doctors said that because of my age my thymus was very atrophied, not likely to be tumorous given its size, and almost certainly no longer active. I’ve been on prednisone (now down to  5mg) mestinon, cellcept and IVIG/Soliris since my diagnosis, and I have almost no symptoms. Thymectomy is not such a minor surgery, and the risks and inconvenience should be carefully balanced against the likelihood of real benefit for each individual. It seems plausible that patients over 50 may be less benefitted by the surgery, safe or not.

[Douglas F Young]

I have been having a hard time with brain fog lately. It comes on when I have been concentrating mentally on some task, like installing a new modem and wifi system, doing taxes, that kind of thing. I start to feel increasingly foggy, have difficulty concentrating, my neck (my most sensitive MG-related body part) starts to feel very fatigued, my eyes feel droopy (not ptosis, more like just sleepy) and I have the urge to close them. I get the same symptoms sometimes when my mestinon is late, but now in these new situations of mental exertion. Anyone else experiencing something like this?

[Douglas F Young]

I had the 2 initial shots, then 2 more after the dosing was reconsidered.  (The dosage consists of 2 separate shots, one in each cheek)

Zero side effects.

[Douglas F Young]

I have GMG, age 76 diagnosed at 64. Imuran made me intolerably sick in about 10 days. I actually checked myself into the hospital thinking I was having a heart attack,  my arrhythmia was so intense.  Nope, just the Imuran. Quit that and within 24 hours just fine. Cellcept now for five years without any side effects. Down to .5 mg prednisone plus 240mg mestinon and semimonthly Soliris. Doing very well.

The takeaway? With MG Everybody’s different.

[Douglas F Young]

I hope you have at least been evaluated for hearing aids. They really helped a lot, even though I have close to zero hearing on the side with the neuroma. It is weird to lose the directionality of sound, but the hearing aids improved that. Of course if you really have zero hearing in that one ear, hearing aids cannot help.

Other than the hearing issue, are you tolerating the azothiaprine? I know, that’s like asking “Other than that, Mrs. Lincoln, did you enjoy the play?”

[Douglas F Young]

I have poor hearing due to an acoustic neuroma and general aging, not because of medication. I took azathiaprine for ten days and it made me so sick that I would believe it could cause anything, including hearing loss. I’m doing great on mycophenolate as an immunosuppressant, so there are certainly alternatives to azathiaprine.

[Douglas F Young]

Excellent summary. My team came to the conclusion that waiting 2 weeks before the next booster was sufficient. The Evusheld materials say to refer to the CDC guidelines regarding covid vaccines, but I could find no guidance whatsoever in those materials. I guess your mileage is going to vary.

[Douglas F Young]

I had the shots, zero side effects, not even soreness at injection sites.

I ran into very little red tape. The infusion center gave me the name of a local doctor qualified as an infectious disease specialist.  I sent an email to my doctor giving him the other doctor’s name. That specialist reviewed info from my doctor, and found me suitable for the shots. My doctor then sent an order to the infusion center and I  had the shots at my next visit.

The only thing I might add would be that it is not a treatment for covid; it is designed to actually prevent the disease from taking hold in the body. It also is absolutely not a substitute for vaccines.

[Douglas F Young]

Christer, I was diagnosed at 67 with diplopia and tsosis.  That was the extent of my symptoms for about 4 years.  Some people never go beyond these ocular symptoms. However most people do. The extent to which they get generalized symptoms varies highly.

Something I have noticed in my research and interchange with with other myasthenia patients is that this is a highly individualized disease. I encourage you to read all of the forum topics and contributions. You will get some insight into how unique each person’s experience is.

Nonetheless,  I feel comfortable telling you some things I have learned.

MG is not predictable. Is has its ups and downs. You will eventually find your own range. I for one am almost asymptomatic as long as I take my meds, in my case mestinon (pyridostigmine) cellcept, small dose prednisone and biweekly Soliris. Don’t worry about anticipating spells medically; mestinon works almost immediately and is the only thing that directly addresses symptoms. You should do some research on the role of acetylcholine in MG and how the enemy is the autoimmune antibodies that attack the acetylcholine receptors in the nerve synapses.

You were extremely lucky to have so quickly encountered someone who recognized your symptoms. Accounts abound of diagnoses delayed months, even years by consecutive medical professionals with no familiarity with the disease.

Depending on the course of your disease, you may be advised to take immunosuppressants, to inhibit the rogue antibodies in your blood. Steroids act quickly but with significant side effects that make a less desirable long term solution. Imuran and cellcept are common additives or alternatives, but are long arc tools, often taking months to kick in. I have not found mestinon to be very helpful for ocular symptoms, every one is different. You might never need anything else. But my reading has led me to believe that less than a quarter of patients stay at the ocular stage.

Don’t work or exercise until you are exhausted. Know your limits. There is no value in wearing yourself out. Myasthenia is not so much about weakness as it is about fatigue.

Find a neurologist with experience with myasthenia who has an open mind.

Try to avoid stress.  Good luck with that.

Good sleep and timely rest are good medicine.

There’s a lot of good information here, and a collective centuries of experience.

See you around!

Doug

[Douglas F Young]

My neuro wanted to try the mestinon first, because prednisone is a two edged sword. After a few weeks she started me on a regimen that ended up at 60mg a day for several months and started tapering off. I am now at 10mg and still going down.

What can I say?  It worked very well for my myasthenia. But it aggravated my blood sugar, made my skin easily torn and bruised, made me more aggressive and made my wife harder to get along with. 😉 It hasn’t affected my bone density but it often can.

I think I’m on the right track for myself: high dose prednisone concurrent with immunosuppressants, then tapering off the prednisone after the immunosuppressants have had time to work. Cellcept, for instance, may take from 6 months to a year to take effect.

Overall the benefits have definitely outweighed the side effects.  But as they say, your mileage may vary.

[Douglas F Young]

I started with mestinon immediately on diagnosis but it wasn’t until I had been on prednisone for several months that my diplopia and ptosis finally resolved. I get the sense that mestinon alone isn’t very useful against ocular symptoms.

[Douglas F Young]

My diplopia was so bad when  I was first diagnosed that I couldn’t drive without closing one eye. I started wearing an eye patch but that means driving with significantly impaired depth perception,  which meant staying out of freeway traffic. It took a few months of higher doses of prednisone before it resolved.

The diplopia has been the canary in the coal mine for me. It told me when I was reducing my prednisone too quickly. I am now down to 10 mg, but that took several years. Only the smallest diplopia now.

[Douglas F Young]

I have swelling in my feet and ankles. I also take Cellcept. Twice in the last year I have discontinued my Cellcept for 3 weeks or so.  But I have not noticed any change in the swelling during or after those occasions. It’s possible that it would take more time than that to notice a change if cellcept were the culprit.

[Douglas F Young]

Some good information here. Thanks

[Douglas F Young]

I take it for nerve pain in my legs from compressed lumbar nerve roots. It helps me a lot, and I don’t notice any side effects.

[Douglas F Young]

Its reassuring that the MAB helped you even with your immunosuppression.

I tweaked my immunosuppressants before my booster and finally got some positive results. Nothing at all from the first two shots.

[Douglas F Young]

After a short time I had flu-like symptoms and heart palpitations that really scared me. Both resolved 24 hours after I stopped. Cellcept now for 4 years w/o side effects, other than my firm belief that it stymied my first 2 covid shots.

[Douglas F Young]

Good for you. Research, learn, and take control of your health. 

[Douglas F Young]

• Mike: check out Lionel’s citations:
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5718710/
  https://myastheniagravisnews.com/news/hearing-tests-can-help-diagnose-monitor-mg-study-suggests/

[Douglas F Young]

Thank you Lionel. I have tried to educate myself about MG for several years, and these articles have opened my eyes (though not my ears).

I am going to call my audiologist and find out if my recent tests might need to be redone with the specific tests for MG related hearing loss that are described in the articles you have shared.

Doug

[Douglas F Young]

Good question, and not likely to be answered soon. We don’t even know for sure how well the antibody numbers correlate to immunity. The antibodies are waiting around to notify the immune system that known pathogens have been detected, but maybe with immunosuppressed people there’s no one waiting to do anything with that information.

[Douglas F Young]

I had Pfizer shots in Jan-Feb this year. Antibody tests came back negative. I was on 2000mg of mycophenolate at the time. I stopped the mycophenolate for two weeks before the booster and got positive results. I am also on 10mg prednisone which I left alone.

[Douglas F Young]

Jack, this is really uncharted territory, but we know some things. 1 1/2% of the population is immunosuppressed, but as of August 1 accounted for 46% of the so-called breakthrough cases. Looking at Colin Powell, we see how dangerous covid is to people with immune issues, either as a result of disease or as a result of induced immunodeficiency to treat autoimmune mediated diseases.

I got nothing from the 1st two Pfizer shots, based on blood tests. Looking at the available information, I concluded it was my immunosuppressants (Cellcept, prednisone and Soliris) that inhibited my response, and when the 3rd shot became available, I discontinued my cellcept and delayed my Soliris pending and following my “booster.” I finally got a response, though a modest one.

I hadn’t told my neuro of my intentions, but she reluctantly conceded it was probably a good thing for me to have done. I am currently working to find a way to get a 4th shot, because a don’t believe the 1st two counted at all.

I am not recommending this to anyone. I have a well-controlled case of MG, and have been stable on my current meds for several years. But I am 75 years old with elevated blood sugar and I am worried about covid much more than I am about a three week break from my meds. (I continue to take Mestinon though, because it is not an immunosuppressant, and I need it.)

I do agree that you need a Dr. who understands your disease, someone who is educated and open-minded. Covid is here to stay.

[Douglas F Young]

Have you had your antibodies checked? Sometimes the lack of any reaction can be a warning sign.