What is the most effective treatment for MG!
Got diagnosed 5 months ago and was started on 1 tablet of Pyridostigmine a day & now taking 4 tablets daily with 20mg of steroids which has given me severe side effects. Gained 5kg in weight and haven’t slept for more than 4 hours. Saw my neurologist who has started me on Azathioprine 50mg 1
At night and then increase it 2 a day after a month and then 3 times a day and has decreased steriods by 5mg . The mouth muscles go weak after 3 hours and legs are still weak and walking with a crutch .I am disappointed that I am still fatigued and struggle with daily life. How long will this take to b in remission. I am 72 female and have always been very strong. My eyes are blurry in the morning and evening too. I have improved as I managed to eat toast after 6 months and some red meat. I am seeing a neurologist who is a muscle expert next month hopefully he can give me something that would help me to improve and get on with my Life as normal as possible. It all started in March this year and have had some really challenging weeks. Sending positive vibes to all MG sufferer’s.🙏🏽
There is no single most effective treatment. What works for some, may not work for you. Over the years I have been a multitude of treatments. Some didn’t work at all and some were very effective. Unfortunately, we have found nothing that works more than about 36 months before falling off. My advice is to keep communicating with your doctor and let them know you’re not satisfied with how you’re feeling. But keep in mind a lot of treatments require time (sometimes months) to become fully effective. There are a lot more options than there used to be, so keep asking questions and educate yourself on what’s available. You’ll find something that works.
The bottom is falling out again pretty much. Soliris, which worked like a wonder drug for 4+ years is now no longer effective. I can tell each day that I’m getting weaker again and I’m back to being exhausted after minimal activity. Insurance denied Zybrisq and is requiring that I try Rystiggo, even with my doctor’s objections. So now, I’m told that the Rystiggo infusion must be done at home and I’ll have additional copay for that. I’ll get through it though, I always do. This is what MG has been like for me since 2007. So many treatments have failed and the ones that haven’t only work for me a while. 
I'm really sorry to hear that you're going through such a tough time. It sounds incredibly frustrating, especially after finding some success with Soliris for so long. Transitioning to Rystiggo, especially with the added hurdles of insurance and infusions at home, can feel overwhelming. Stay hopeful!
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It sounds like you have refractory MG: https://myasthenia-gravis.com/clinical/treatment-refractory. What MG antibody do you have?
You have been on Azathioprine (Imuran), an immunosuppressant usually more effective for those with AChR antibody type, which you said was ineffective. Eculizumab (Soliris®), which also usually works for the AChR antibody type, has worked the longest for you. But then you have also been on Rituximab (Rituxan®), which is generally most effective for refractory MG or those with MuSK antibody type, with which you said you saw no improvement.
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So, one treatment for the AChR antibody type worked for you for some time. Efgartigimod (Vyvgart®) can treat refractory MG with anti-acetylcholine receptor (AChR) antibodies and could be something to ask your doctor about if you have yet to and are not confident with Rystiggo.
Jodi, Team Member
Hang in there, member. You're on the right path but it takes time. I am 75 now but I got MG at exactly your age, and I can tell you that the first year is the worst. Azathioprine is a very effective treatment, but it can take a year or more to work. I saw no benefit at all for eight or nine months. When the drug finally gets your immune system under control, you should see a remarkable difference. Your need for pyridostigmine and steroids should diminish, and your life will be more predictable, if not exactly normal. Today I have no eye droop or impaired vision, no mouth or neck weakness and only moderate arm and leg weakness. My regimen now is three Azathioprine once a day. Three 1/2 tablet of Pyridostigmine during the day as needed, and a daily maintenance dose of 5 mg of Prednisone. That dose of steroid should have few side effects. For me it is not needed at all to control my mg symptoms, but gives me an energy boost that improves my quality of life.
Hi. 56M. Diagnosed gMG Aug 24. Had 2 crisis for breathing. First lost neck muscle control, face paralysis, slurred speech, choking while eating then breathing issues. Had ivig in hospital.
Now on 3g cellcept per day, 600mg Mestonon per day and 30mg perodistmine.
Gained weight and pig face.
Crazy leg cramps at night and waking to blindness/blurry vision.
gMG punches through still.
No schedule yet.
Another ivig hopefully in future.
Hoping for level out soon .Hi there! Welcome to the group! We're happy to have you here. It sounds like you’ve been through quite a lot since your diagnosis, and your crisis sounds quite distressing. We are so sorry you had to go through that. That must have been unimaginably challenging, especially with the choking and breathing difficulties you experienced. It's great that you’re on a treatment plan. You mention having blindness/blurry vision when you wake up. Are you on a slow-release mestinon(pyridostigmine)? If not, I would ask your doctor about it and if it could be an option for you to try. You're not alone in this journey. Many of us have faced similar challenges and can relate to what you’re going through. Looking forward to getting to know you better!
Jodi, Team MemberTell me about the slow release Mestinon. I am taking mestinon every 4 hours and still have eye drooping. The neuro-opthamologist that I was sent to about surgery just suggested I take Mestinon MORE often and go on prednisone. Obviously, my neurologist and I thought that that was not a good idea. I have a referral to another neuro-opthamologist but I imagine it will be months before I get in.
it's been almost 4 months since your post. How are you feeling? Any changes with your symptoms? I was diagnosed with MG in 2012. It may take awhile to come up with a proper combination of medications to combat those symptoms you're experiencing. Don't be discouraged, you and your doctor will find something that works for you. I'm currently taking prednisone, pyridastigmine and I'll be starting cellcept again next month. I also do IVIG every 3 weeks. Stay positive. You got this. - Jazmin (MG team member)
