Initial Treatent Experiences
As I said in my first post yesterday, I am so thankful for my family doctor. He did not know what was wrong with me, but he did not let that stop him. He sent me for test after test and specialist after specialist until the neurologist figured it out. Now on to the beginnings of treatment which I have to admit has been bumpy.
To start we tried 60 mg of mestonin 3 times a day and that was a god send at first. I could swallow almost immediately. jaw strength was still not great but arm strength at first was good and not twitching. After a week we also added 180 mg of the slow release version of mestonin at night time to bridge the night till my first dose of the quick release version. At the same time I was prescribed Azithioprine because we wanted to avoid a steroid. that did not go well. I I had a bad reaction and ended up in the hospital for a week.
Coming out of the hospital we stopped the Azithioprine of course and started a low dose of Prednisone 5 mg once daily. things went well for another week with the symptoms, but I developed stomach issues with serious cramps and a feeling of nausea frequently. the doctors added a PPI inhibitor Perindopril to calm the stomach. 4 mg 1/day. That did the trick and no more nighttime nausea since then which has helped me sleep through the night.
But symptoms started to return despite the regimen. We increased the quick release 60 mg mestonin to 5 times per day which worked for a while, but then the symptoms crept back in. I don't get many visits with the neurologist so I have resorted to Google while I wait for my next appointment. The quick release version of mestonin is identified as something of a use as needed drug, so I have been adding additional doses. If I do not by the end of the evening I can't lift my water bottle, and have difficulty controling eating utensils.
Stress brings on symptoms. So does too much physical activity. Right now even walking my Yorkie cross dog Chewie brings on breathing issues and muscle trembling. but the big killer for me is the heat. If I spend any time at all out in the sun an humidity and I turn into a wreck. I really have to be careful. I have never been extremely active these last few years but it is ridiculous what activities I used to do that I no longer can.
Google tells me that an "average dose" of mestonin is actually around 10 - 60 mg mestonins daily and that some people need as high as double that dosage. I don't want my dosage to be that high but either I seriously curb my daily activities and avoid a lot of the triggers, or I think I am going to have to increase the mestonin beyond the average dose. My livelihood involves constant user of my hands. I have to be able to type but at least the office is well air coxnditioned.
Is anyone else on a mestonin dose at or above 10 - 60s per day?
Opinions and advise welcome
My first 4 months started out with low dosages and various drugs I had adverse reactions to. Azithioprine worked at first but after about 2 weeks i had an allergic reaction with hives over most of my body (not good). Went on prednisone, 5mg at first then all the way up to 70, by Jan (4 months in) i couldn't speak or drink or swallow without choking. Finally went onto infusion therapy and within 2 weeks I was somewhat back to normal, and able to speak, eat and drink fairly normally. Still severe weakness and limited ability (any strenuous activity would wipe me out). I have been on several drugs which have not worked (trying to get off prednisone).
Good that you understand the stress aspect, I nearly died when a stressful situation caused an MG crisis with 0 ability to breath. What saved me was my cpap which allowed me to force air into my lungs. The dr warned me about stress and the impacts on MG, but I at the time I didn't think much of it, but you sometimes can't control a stressful event, it is just something that happens. Be aware of the impact and have a plan on how to deal with it. I now have a cpap in my house i sleep with and i paid out of pocket to have a travel cpap in my car (just in case).
I am currently taking Mestonin as an infusion, switched to it about 2 months ago, so far it seems to have a similar effects as my IVIG infusions, but I can lift heavier things with the Mestonin infusions than I could with IVIG so it seems to have a better effects. I wish i had done more strength testing prior and post switching from IVIG to Mestonin (also called vyvgart). My infusion methods has me getting it via a mix into a saline bag and I get that once a week for about an hour, then they monitor me for another hour to make sure there is no side effects. It is not a pill format for me.
I can sympathize, Isrpm. You have a serious case of MG that is hard to treat. But many of us here have similar stories. I encourage you to be patient. The early years of MG are often the worse. I can't advise you what to do but I can explain how these drugs work and why you aren't getting a great response.
Mestinon (pyridostigmine) is indeed a miracle drug in the beginning, for those of us who are AChR positive. But it is not intended or particularly useful for long term use. It does nothing to reduce the attack of your bad antibodies on the messenger cells that inform your muscles. It works by increasing very temporarily the number of messenger cells available. I know of some people who take as many as ten pills a day. I myself in the beginning took four, in five-hour intervals, with nothing at night.
I got off of it as quickly as possible because it can lose effectiveness over long-term use and I wanted to keep it as an alternative for symptoms flares. I went to as-needed basis for a while and now use none at all.
Long term, I wanted to reduce the attack of antibodies because they cause all the symptoms and can do irreparable damage to the muscle communication system. There are two classes of drugs that are traditionally used to do that: Steroids and immunosuppressants. It sounds like you are wary of steroids and I don't blame you. Weight gain is among the many, many possible side effects. That leaves immunosuppressants. Azathioprine is an extremely useful, well-proven immunosuppressant, It's too bad you had a bad experience with it. But there are others. Mycophenolate mofetil works the same way and is usually better tolerated. There are a lot of new drugs that are incredibly expensive, and insurance plans often won't pay for them until you have tried the traditional and inexpensive drugs.
If I were you, I'd want to be on an immunosuppressant, and fast, because they take a long time to begin working. You don't have to wait to see your doctor. Call his office or send him an email and ask him if he would recommend an alternative to azathioprine. If there is anything we long-term MGer have learned is that you have to take charge of your health care and aggressively pursue your doctors. Neurologists are busy people. Don't get lost in the crowd.
Once I was on azathioprine for 10 months, it started working wonderfully. The highs and lows of mestinon went away and my disease dramatically stabilized. I still have MG, but I now have an acceptable and stable quality of life. I was able to reduce and finally eliminate both steroids and mestinon.
So my messages are, don't give up on treatment. Find alternatives. And be patient. It's a long road but I promise you it will get better.
