Questions on side effects and not doing treatments

[secret]

Hi,
I was recently diagnosed and was taking Pyridostigm and it almost killed me. I had to be admitted to the hospital and had a 4 1/2-hour surgery. Now I am taking Prednisome 10mg twice a day and Mycophenolic 360mg twice a day.
I still have trouble walking. Now my skin keeps peeling, I am stinging, itching, and keep falling asleep. I feel horrible most of the time. I am supposed to get IV Therapy too. I am still trying to learn about this disease.
I hope things get better for you and me both.
Debbie

[larry-slack]

I know exactly how you feel. I was diagnosed with MG 7 years ago and it was discovered through bloodwork after ER visit. My only symptom has been fatigue; however, Neuro started the typical MG treatments. Mestinon gave me diarrhea, prednisone brought about insomnia, weight gain, and diabetes level blood levels. IVIG caused vein issues and back to ER. Cellcept did nothing. Then on to infusions of Rituximab which was expensive and no help. I have stopped all MG suggested treatments for almost a year, and other than fatigue, which I’ve learned how to manage, I’m going okay. I may develop more severe symptoms in the future, but I’m tired of hearing “Everyone responds differently. . . Let’s try this as some of other patients have seen positive results. . . There’s many new treatments on the market now . . . Not sure if insurance will pay . . . Etc”. I’m reallocating my medical copays to vacation and normal life things, and afternoon nap is my solution to fatigue.

[Shelly]

I’ve going through an ordeal with my doctors. Since I was diagnosed 4 years ago, they offered me;

mestinon which I take daly and as we know it becomes ineffective with years of use

steroids – nearly killed me and worsens all my symptoms

Azathioprine- done absolutely nothing for me apart of increase my cholesterol levels + making me bald (40% of my hair fell out)

Apart of this nothing else has been offered to me. I would love to try rituximab but the chances of it happens are very low.

[Lou DeYenno]

Hi

Sorry to learn about your MG. I am just coming out if a 6 month flare so I can empathize with you and others. I have had all the standard MGsymptoms plus medication symptoms. Daily, I am taking prednisone, now down to (15mg). I’m on Mestinone (180mg slow acting) and Ultomiris every 8 weeks. I’ve taken IvIG for 2 years and it stopped working this past March( when the flare started)…I was on Cellcept for 18 months with no results and then tried Imuran which gave me a 101 plus fever… needless to say most treatments are trial and error. I was also given plasmapheresis. I had an MG crisis 2 years ago that put me in icu for 10 days (3 days on a ventilator). I have consulted with 5 different neurologists and they all have various opinions (mostly in agreement) but there is not a uniform treatment for MG! The most annoying side effects is the under skin bruising that pops up anytime and anywhere… I look like Barney with all the purple blotches. Seems to be a prednisone side effect. Everything seems to be working fine now… speaking, chewing, swallowing and breathing. I started exercising again and getting back to my normal. I am blessed to have a wife who is a retired nurse (once a nurse always a nurse) and my best advocate…and I have a family and friends who pray for me plus I have Jesus helping all the time!😊

[Shelly]

The main issue is the myasthenia itself, then the lack of knowledge of the neurologist dealing with mg. I wish the same way it came it would just go away from our bodies. I see people beating cancer and no matter how hard it try I cannot manage the mg symptoms. I am so frustrated

[gina]

I have mg for decades.. Did the usual protocal – mestinon , prednisone and thymectomy. Mestinon no longer works, pred took for 8 years stopped when pregnant and I believe thymectomy helped since I am stable.. I can function ok but still have swallowing issues and r/s facial droop. The last two neuros seen think I am doing ok and one would not even script me mestinon ( got it from my primary Dr tho) One Dr told me my mg ran it course and I have residuals 🤦‍♀️. I have appt with a new neuromuscular Dr ; anxious to hear his advice.

[Lou DeYenno]

Wow, “Ran its course” is a new one for me…I hope and pray it comes to that… I take the meds as long as I am symptom free…

[linda-g]

I have been surprised and sorry to read how many suffer side affects and worse, no result or control of MG despite medication. I was having MG symptoms about 10 years before I went into a major crisis when I caught Swine Flu, a year before that I had been diagnosed but refused all treatment as I thought I would get on top of it with rest. Six weeks before the swine flu I had started a live in job and was under a lot of stress and was then having swallowing, speaking, head drop and weakness with arms, then I caught swine flu and ended up sedated and on a ventilator for a week and in hospital for 4 months as I could not swallow. I was on prednisolone for 60 mg alternate days but this did not work, but I was told it could take 2 weeks to work, so eventually I thought it was making me worse and I asked to reduce the dose. I refused the Azathioprine due to fear of side affects. I was on Mestinon 4 hourly 60mg and higher at times but it did not help the swallowing much, but the hospital also gave it to me as meals were brought or even afterwards, I did not realise this was meant to be taken at least 30 mins before food. I asked to be discharge and went to London to stay with a friend. After a month I could not eat or drink enough and ended up in ITU again and with NG tube, this happened three times and I had an NG tube in for a year and a PEG tube in for another 6 months. Eventually 60mg daily over 6 months started to work and the PEG tube was removed. Steroids do take time to work, I was not told this, plus I was not used to so many drugs and would not take more than 60mg and this was alternate days. I agreed the Thymectomy before this and after removal of the PEG I also agreed Azathioprine, I was warned it might take a year before it would work. I was fortunate I had no immediate side affects but I had 2 cataracts removed due to the steroids. Now after 9 years of Azathioprine I have had 2 skin cancers on my face and nearly zero white blood cells and it is suggested I change to another drug due to these other side affects. My steroids are 6mg I cannot seem to below this without trouble of some sort so I am gong to ask to keep it there. I have 100mg of azathioprine now being reduced to 50/100 alternate days to try and improve the blood cell count. I am also taking vitamin C and zinc, Folic acid and B12 as on googled and they say this helps low white cell count, whether it will or not I do not know, I checked with the consultant if it was OK for me to take. In 2017 I had renal failure (I had acute water retention) which turned out to be Nephrotic Synmdrome Minimal Change Disease which was resolved with 6omg daily steroids again for 3 months, then reduced over 4 months but when reduced to 5mg it came back again. They say this disease is usually in children and if in an adult then consider those suffering MG and other such diseases that are often linked, but not the reason for it. The Nephrologist suggested I try Tacrilimos which would keep the kidney condition under control and I would get off the steroids as well. Tacrilimos was developed in Japan and it is their first drug of choice for MG, but what I read in google is that it sometimes still needs small doses of steroids as well. Plus it also has a variety of the usual side affects the other immune suppressants have. So after 2 years of thinking about it, and also reading the experience of MG sufferers on this site, how after many years they are still not stable. I feel at 68 I am fortunate as I have these various side affects but I live a fairly normal life and pretty well. I do avoid infection risks and do not go out that much, or take precautions if I do, I virtually reverse barrier nurse myself. The skin cancer is an issue, but at my age I will have to die sometime and minor surgery can control it to a degree. If I alter the drugs I will STILL have the risk of similar side affects, and may destable what is stable, it is not worth the risk I feel….for me. Azathiaprine does have high risk of skin cancer but I have a friend who has been on it for 35 years for renal transplant and she has these removed from time to time, so one can survive this risk…but , we are all different. My main comment is, give a new drug a chance to work, 3 to 6 months at least, unless it is making you ill in some other way (I think hair grows back usually but not sure), maybe if the main MG drugs do not work, maybe ask your Consultant about Tacrilomos, as in Japan they do use it for most of their patients, with the possibility of support of a small does of Prednisolone or similar if needed. However, I have asked the myawareUk website about it and they make no useful comment on it, but provide details only on the well known ones. But if you are stuck in an unsatisfactory MG state then it might be worth considering. I think it is just not on the EU or UK standard/ recommended treatments for MG. I also have had IVIG and plasma excange which also did nothing for me. Mestinon did nothing while I was in MG crisis except once, after they gave me Neostigmine IV when in ITU, which have me almost instant relief, it was a wonderful reprieve, and after the affects wore off after 3 hours or so, to avoid my having to be intubated again they gave me 3 hourly 60mg dose over every 24 hours (plus the steroids I was also on at the time but not working yet). Neostigmime was only given by IV and the 3 times I had it I went into bladder retention and had to be catherised for a week. it also made my blood pressure go so low there was amedical staff panic, as with the Plasma exchange. I think was because the mestinon gave me very low blood pressure, as well as mild nausea in the throat, headache at times, diarrhea, excess saliva which was a significant problem when I could not swallow saliva, and moderatley severe cramps. At times when on higher doses, I used to feel like a xmas tree with fairy lights lighting the tree (my body) ad hoc like little blinkers of power on and off. However, it was all bearable, though difficult, the excess saliva and not being able to swallow was the most difficut to deal with.