NeuroTalk Support Groups - Prednisone didn't work, what should I do now?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Prednisone didn't work, what should I do now? (https://www.neurotalk.org/myasthenia-gravis/241622-prednisone-didnt.html)

Prednisone didn't work, what should I do now?

So I was taking 20mg prednisone and has a relapse after 15 days of taking and got no improvement. My neuro has told me to for a plasma exchange and has upped my Imuran. I am currently on 10mg Prednisone and Mistinon 5 times a day... Please help me in guidance. What should I do now? I told my neuro that I am a poor women and cannot afford plasma exchange after I've spend almost 700,000 on Thymectomy in June. I am so depressed right now. Please help me... I have no hope left. When am I going to see the effect of Imuran? I do job as a teacher. If I lose it I will be homeless. I have kids to feed and they are school going. I cannot end my life. Please answer my questions. Should I go to a new neuro? She should've had prescribed me Cyclosporine? Methotrexate? CellCept?

Quote:

Originally Posted by alianazli (Post 1227949)

alianazli,
Where are you. Are you in the U.S. or some other country. You wrote on Oct 11th about your problems. Annie and myself ask about your current condition and symptoms, and you never wrote back. We are not Doctors here, but we might provide some help. I think most of the members on this support group are hesitant to tell you much, not knowing what your condition is now.
Maybe you could provide some insight as to you current condition.
Thanks FREDH

Quote:

Originally Posted by Snoel (Post 1228088)

When I was admitted for my crisis in April 2015 I was in real bad shape, couldn't breath, speak nor swallow, arms neck double vision.

They stared me on IVIG for 4 days and after a week started me on Prednisone 20mg and every 3 days kept upping dose by 10mg all the way up to 60mg. I was on 60mg for a month to see how I'd react, unfortunately it still wasn't enough we then started upping Mestinon which I took every 4hrs, dosage started at 60mg and again seeing how I'd react.... Long story short I went as High as 180mg every 4hrs and it still had serious symthoms...they kept telling me that Preds could take up to 4 to 6 weeks to kick in.

I finally started seeing some improvement after 3 weeks but was still on a high dose of Mestinon after 6 weeks with very little improvement they decided to start me on Imuran again starting a low dose 50mg upping every week by 50mg to finally Max out at 200mg a day and still on to this day, imuran can take up to a year to kick in it took me 8 and we then started to wean off Preds ever so slow, I was cutting back 10% of dose every 2 weeks, once you get to 10mg it gets even more crucial to wean off in VERY SMALL increments or else you can have some pretty adverse side effects !!!

All this said there's no 2 cases alike... What works for some doesn't mean that it will for you...

I still have issues and symptoms that keep popping up, I've done 82 Plasmapheris which I was doing on a weekly base and it's had it's toll on my body which I have gotten off since 2 weeks and now back on IVIG every 3rd week.

I'm getting tested for LEMS and LUPUS since I'm having somewhat similar symptoms, I hope to GOD I don't have!!!

All I'm trying to say is...PATIENCE, PATIENCE, PATIENCE and then some! don't give up and learn to accept and live with your conditions and make adjustments accordingly.

I'm back to work after being in the hospital for 8weeks and off work for 10 months, I use to work 60hrs a week and now work 24 to 30hrs and made some BIG changes in my lifestyle... I thank God every day to be able to be with my Family and loved ones!

Good luck and don't give up!

Wow Snoel,
You really had a rough run there. I had a similar experience as you, with crisis in Jan this year. Finally had to have heavy dose of predisone, 60 mg mestinon every 2 hrs, and 100 mg Imuran daily.
Now down to 10 mg predisone. Probably will stay on Imuran. My main difference is that, at least so far, not much problem. Oh yes I had to do 5 treatments of plasmapheris. It really helped me though.
I had a minor crisis last year with plasmaphrisis, also helped a lot. Seems like every time I have plasmaphersis I have some A-Fib. Probably not related. The cardiologist did not seem too concerned.
FREDH

Quote:

Originally Posted by alianazli (Post 1227949)

Disclaimer: this is my first post. I am 30 and just diagnosed with MG about 6 months ago, but have fighting symptoms for two years. I am brand new to alot of this stuff so please consult a neurologist and take everything i say with a HUGE grain of salt.

I am sorry you are having such a hard time. MG is ever changing condition and makes treatment very difficult as you know. I have a wife and two kids for which I am the sole provider. I know that burden can be very difficult to bear with a disease like MG. Please take heart knowing there are several companies working for a cure. I know one company in Germany is working on their first set of human trials. I am very hopeful a cure will be found in my lifetime.

I too am in a very high stress job. Stress is a MG trigger. I am currently considering whether or not I need to find a less stressful job. Even though pay may be less, it may improve my health. This may be a step for you to consider.

Also, I am currently only taking Mestinon Time Span and regular Mestinon. I am currently taking 1x 180mg Timespan in the morning and 3 to 5 x 60mg regular Mestinon in 3-4 hour intervals. Now, I'm a big guy, but my understanding is that does is not too large. I have never tried anything else, but have seen a huge reduction in symptoms. I know you are on several other medications, but to me a much higher dose of Mestinon may be needed.

Maybe unrelated, but I also take 2x20mg of Adderall daily( though I recommend Vyvanse) for ADD. However, considering the stimulate nature of the drug, it helps me greatly to overcome my MG symptoms to get through my day.

I have not researched this at all, but I wonder if reporting MG to an employer as a disability would help at all. This would help protect your job. I know with people with Narcolepsy, naps can be prescribed and employers must provide you with time and space to do so. Or it maybe that they provide you a designated teacher's aid to assist you so you do not get bogged down.

Sent from my Nexus 6P using Tapatalk