[Douglas F Young]

Its good to see some people getting antibody responses despite being immunosuppressed. I sure didn’t. But this disease seems to treat everyone differently.

[Douglas F Young]

PLEASE NOTE: THIS IS MY EXPERIENCE. IT IS NOT MEDICAL ADVICE.

I had exactly zero side effects to either of my Pfizer vaccinations. Unfortunately I also had zero immune response, as indicated by a antibody test. I take cellcept, prednisone, and bimonthly Soliris infusions.

Cellcept, Imuran and methotrexate are 3 immunosuppressants in common use that have been shown to suppress immune responses from other vaccinations. As far as I know they have not been tested against the covid 19 vaccine, but I highly suspect that my lack of response was due largely to my cellcept regimen.

I took it upon myself to stop my cellcept for two weeks before and one week after my booster shot, and skipped one Soliris infusion. I am on a 10 mg dose of prednisone, which is supposedly unlikely to suppress an immune response.

I got pretty sick the night of my vaccination, and a sore arm. That’s exactly what I hoped for. I will have another antibody test in a few weeks to see if I have some antibody response, but I think I will.

So its fine to be concerned about side effects from the vaccine, but a hidden danger may be to have no effects at all. Don’t assume that you have some protection from the virus just because you got the vaccine, especially if you’re immunosuppressed. The booster may fail for the same reasons the series did.

I will report back on my antibody test if anyone is intrested.

[Douglas F Young]

Also, there would seem to be no benefit for MG diagnosis in testing for antibodies to muscatinic receptors, since the nicotinic AChR receptors are the tissues damaged by the AChR antibodies. That’s assuming of course that the antibodies are that finely tuned.

For other diseases like ANS I could see clear benefit.

PS. I’d like to hear your thoughts on tinkering with immunosuppressants before my covid booster shot. Two Pfizer vaccinations left me with no apparent antibodies, and I’d like to try something to get some benefit from the next one. Doctors do not want to discuss this.

Doug

 

[Douglas F Young]

Also, there would seem to be no benefit for MG diagnosis in testing for antibodies to muscatinic receptors, since the nicotinic AChR receptors are the tissues damaged by the AChR antibodies. That’s assuming of course that the antibodies are that finely tuned.

For other diseases like ANS I could see clear benefit.

 

[Douglas F Young]

Jane, such a well thought out analysis. You have a remarkable grasp on the essentials of MG. That’s why anti-cholinergics are bad for MG patients.  Drugs such as scopolamine for motion sickness, in this case, cause a decrease in available acetylcholine, which inhibits autonomic nerve activity, causing dry mouth, urine retention, sometimes constipation, all related to muscatinic synapse mediated autonomic nerve stimulation. Increasing the available acetylcholine with pyridostigmine will stimulate autonomic (muscatinic) activities for patients who need it. You might have thought of a potential benefit for people other than your daughter who share her syndrome.

I too am very interested in the nuts and bolts of my disease, and I  am disappointed that neurologists don’t really want to talk about MG on this level.

Doug

[Douglas F Young]

I went up to 60mg over a couple of months. Going up and down on steroids has to be gradual. Within about 4 or 5 months my double vision resolved, quite suddenly. Then we started tapering down over the next year or so to 30 then 20 where I stayed a long time, several years. The diplopia was the canary in the coal mine for me. When I went down too far the double Vision would pop up and we would bump it back up for a while.

I found that wearing an eye patch made the double Vision more manageable, but with obvious drawbacks, including a lot of lame pirate jokes. Be careful chewing things; you may encounter some swallowing problems.

I’m now at 10mg without the vision issues, but I also take cellcept and get Soliris infusions twice a month. The prednisone has a lot of undesirable side effects, but it really knocks down those misguided immune cells that are attacking your nerve synapses. Long term goals include reducing the prednisone as much as you can, however.

Progress is incremental with MG. Be patient and kind to yourself. Most of us find it manageable.

Feel free to ask questions, but few diseases seem to be as individualized as MG, so try not to measure your progress or lack of progress against what you hear from others.  We are all different.

[Douglas F Young]

Greg, it sounds like me my first few months. I don’t think the mestinon helped me much with the ocular stuff, but I  was on a pretty aggressive prednisone dose, about 60 mg at first, and my vision straightened out in about four months. I  wish you luck with your new journey.

Doug

[Douglas F Young]

SOME POSITIVE WORD FROM THE CDC ABOUT THE IMMUNOSUPPRESSED AS REPORTED ON CNN FRIDAY AUG 6:

Internal discussions at the US Food and Drug Administration have centered around an early September timeline for laying out a strategy on Covid-19 vaccine booster shots, a Biden administration official told CNN.

The strategy would apply for all vaccinated people. A decision for those who are immunocompromised and face greater risk from the virus is expected sooner, the official said Thursday.

[Douglas F Young]

Hilda, I hope your neuro at least looked at your feet. Spongy swollen feet may be more common with age, but can be a sign of venous insufficiency,  diabetic blood vessel problems, or maybe lymphedema, especially after surgery that involves the lymph glands. I have that same spongy feeling (I wear compression stockings) but we haven’t figured out why yet. But have it checked out.

Doug

[Douglas F Young]

I don’t think it’s a symptom of MG, actually, but rather a side effect of of the cholinesterase inhibitor mestinon.  (Having to type out pyridostigmine is an unpleasant side effect of participating in an MG forum.)

[Douglas F Young]

When I first started taking mestinon,  I had watery eyes, runny nose and even excessive salivation. It’s gone now, but I went through some leaky times.

[Douglas F Young]

Thank you, Marguerite. I had both Pfizer shots in late January and early February.  I had exactly zero response to both shots,  not even a sore arm. I could have been given a placebo. The antibody test last week was also zero. I am scheming a two week vacation from prednisone and cellcept,  followed by a J&J vaccine the day before my Soliris infusion. I ABSOLUTELY AM NOT RECOMMENDING THIS TO ANYONE ELSE!! This is uncharted territory but I am much more concerned about stopping the immune suppression than getting another shot. I’m frustrated, and I think the medical community feels it has bigger fish to fry than the immune suppressed population.

 

[Douglas F Young]

You might want to ask your doctor to order an antibody test. The lack of any reaction could be a sign that your body had no immune response. That’s what happened to me.

[Douglas F Young]

That’s what I did for my 3rd shot since I had no immune response to the first two shots. I took 2 weeks off cellcept before the shot and a week after. I got a modest response (>20), but better than nothing.

[Douglas F Young]

Mycophenolate and azathioprine have similar suppressing qualities. I stopped my 2000mg cellcept two weeks before 3rd shot and got (finally) an unpleasant painful flu-like response after two fizzles following my 1st and 2nd. Antibody test in three weeks. I will share.

[Douglas F Young]

Wow, that’s really a Catch-22 situation for you. I sure hope your “booster” (I hear they’re emphasizing the booster label in favor of “3rd shot”) works out a lot better.

PS. Maybe ask your Dr. to order an antibody test. I bet you’ll see good results

[Douglas F Young]

Kathy,  that makes sense; mestinon treats symptoms of MG, but it is not an immunosuppressant. Many of us take cellcept, imuran, prednisone or other immunosuppressant therapies such as Soliris or rituximab,  which unfortunately seem to discourage our systems from making the antibodies in response to the vaccine.

[Douglas F Young]

Hilda, I hope your neuro at least looked at your feet. Spongy swollen feet may be more common with age, but can be a sign of venous insufficiency,  diabetic blood vessel problems, or maybe lymphedema, especially after surgery that involves the lymph glands. I have that same spongy feeling (I wear compression stockings) but we haven’t figured out why yet. But have it checked out.

[Douglas F Young]

I like that.  Intuitively you know now not to trust your intuition.  My frequent diagnosis is WDYEAYA: What Do You Expect at Your Age?

[Douglas F Young]

Instead of adding an antagonist, maybe reduce the mestinon a little?

[Douglas F Young]

I think you will have to ask for it. Nobody really knows what clinical significance the results have, so the test will not likely change their medical advice one way or another. But I’d want to know anyway.

[Douglas F Young]

Sounds like you might be MuSK antibody positive; I’m AChR. I’m still going to try to get another vaccine after a short immunosuppression break.  Thanks

[Douglas F Young]

BTW, The CDC’s Advisory Committee on Immunization Practices is scheduled to discuss additional doses for immunocompromised individuals during its meeting on July 22.

[Douglas F Young]

Thanks, Marvin, that seems to be consistent with other people’s experience. Mestinon is not an immunosuppressant, but everything else I take is. I didn’t know Retux was delivered on such an attenuated schedule. I get Soliris, another monoclonal antibody, bi-weekly. How does the Retux seem to be working for you?

Doug