[Ken Spencer]

Im interested to know who told you you were in remission. Many of my symptoms have disappeared but I still have some loss of power in my arms and legs but I lead a fairly normal life for a 77 year old. Ive asked about reducing my meds but my doctor tells me I will be on them for the rest of my life. Im on Prednisolone, Methotextrate, Calcium and folic acid . It would appear that your docs have took you off all medication ?

[russ]

I did not know I was in remission. My neuro and I had decided to switch from prednisone to a different autoimmune drug (I can’t even remember which one). Anyway, I was to taper prednisone down as low as I could while starting the new drug gradually. Prednisone was pretty much controlling my MG symptoms without mestinon, and most of my issues were prednisone related.

I had read that some folks do go into remission after a year or so (rare, but possible). I rather strongly told my neuro I would like to taper to the very lowest dose of prednisone I could take and still have MG under control, before starting the new drug. I wanted to know if I could get by on a very low dose, as I knew that prednisone did work for me. She didn’t think that was a good idea. However I persisted and went on my own gradual tapering, dropping a little every couple of weeks.

My neuro, when she realized I was going to do this, gave me suggestions. “Don’t cut the daily dose, just take it every other day, and if that works try every 3rd day, 4th day etc. You know if MG is coming back by your symptoms and if needed you can take mestinon again if you get in trouble.”

And so at maybe 20 mg per day, I started skipping days, eventually going a whole week with one dose. And then I quit completely. I also noticed that if I took mestinon, it didn’t help with anything, just made me twitchy, like what happens to a normal person who takes it.

The biggest problem was since prednisone had shut down my adrenal glands, they needed to start up again. Without them and without prednisone, one gets very many aches and pains, the kind that painkillers fix — so different than MG. I think about 6 months after I got off all medications I was feeling reasonably normal again, and I never have had any MG symptoms since.

I asked my neuro if I could have a antibody test while in remission to see if the bad antibodies truly had disappeared from my system. She said that having had MG, I would never have a normal test. I wonder if that is true.

I think I had some inkling that I was going into remission while still on prednisone. What seems to me made the change was when I was put on testosterone replacement for osteoporosis and severe hypogonadism. The T replacement gave me some ambition, my muscles started returning and I felt much better. And that is when I first noticed that the MG symptoms had pretty much disappeared. I asked my neuro about that — not very likely as cause effect. My endocrinologist said “When your endocrine system is screwed up, there are far more things that can go wrong that most of us realize.” I was told my hypothyroidism, my hypogonadism, and my MG were all autoimmune related.

I do not recommend others following my path. I suppose I am one of a kind, a very lucky person.

[russ]

The book on Amazon is at https://www.amazon.com/dp/B0F2F8QL6B?ref_=pe_93986420_774957520

[Indar]

I was diagnosed with gMG in 1958. I did undergo a thymectomy in 1959 and went into a crisis afterward. I believed wholeheartedly that I died for a brief period. I was resuscitated, intubated and finally given a tracheotomy, hooked up to a Bennet respirator. The experience was horrifying and I have struggled to explain it to myself. I am 82, in full remission and writing a book as well. I look forward to reading yours.

[russ]

I found writing an outlet that helped me through the problems.

[Ronald]

russ i went to germany with MG for prostate treatment 7 years ago

 

afterwards the doctor prescribed prednenolone and i remember going into remission

 

this continued for 3 months or longer and when i told my neurologist the reaction was that this medication was for women and would not prescribe it again for me so i have been on the prednisolone since

i read your blog with great interest re the hormone imbalance so i have purchased your book from amazon and it wont be delivered until mid next month due to my location in australia

i would be keen to receive your comments

thanks in advance Ron

[russ]

From my time on the MG forums back when I was having the bad time, it appears to me that we all have our own version of MG, our own path through treatment, and our results vary widely.

I had worked in medicine as a researcher for 25 years before I got MG. I think that gave me much more confidence to try to take on my own treatment, especially in things like tapering medications and taking them as needed (mestinon).

One hopes that our neurologists have experience in MG, are up to date on new treatments and have the time to really concentrate on our own case. However, that is being very optimistic!

Good Luck

Russ

[Chubby]

I agree with your suspecting hormonal imbalance has something to do with MG and symptoms. I have various things going on right now (I’m 74) that I believe could be traced to hormones but I live in a very small town and doctors aren’t willing to invest very much time and energy into discovering the root cause of an ailment. Asked my sleep medicine doctor about referring me to a neurologist: he couldn’t come up with the name of even one!

[mik]

So I’m taking 10mg prednisone and 1000 cellcept. Going to 5mg on April fools day. Lol only symptoms now are mobility. Weak legs and bad gait. Also taking Androgel for the same condition as you. Are you completely back to normal?

[Barbara E.]

I had a similar experience to you, Russ. After living with MG for a decade, I became completely paralyzed had to be hospitalized for 15 days. Eventually, I received a 3-day IVIg treatment and could move again. Months later, I thought I was getting worse again. Then was told I was no longer producing the antibody causing my MG, so un-needed high dosage of Mestinon (pyrostigmine) was backfiring to cause my muscle weakness. The doctor explained that sometimes folks go into remission (no symptoms/no medication needed) after a crisis and the remission could last for weeks, months or even a lifetime. In my case, my remission lasted for 13 years before my symptoms returned in 2022. Luckily, there are more approved treatment options now than we had all those years ago.

[Robert Zidle]

I am nearing remission but don’t expect to reach 100%. Currently on 2mg prednisone/day and 2000 mg mycophenolate mofetil. Only slight lower body weakness remains.