Dev keshav
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I have generalised mg. I was taking pyridostigmine 60mg 3 times a day. Also on 100mg azathioprine daily. From the beginning I would have cramps regularly. However about 4 months ago the cramps were excessive. Any movement I made would make me cramp. My back, hands, legs, stomach. I then stopped taking the pyridostigmine for a few day. The cramps stopped. I then started taking the pyridostigmine again. The severe cramps started again. So I stopped. I now only take azathioprine. So far I’m ok. I don’t see a neurologist because they don’t accept medical insurance and I can’t afford to pay the cash.
I might be in remission, but I can’t tell. I also cannot take a chance to stop azathioprine. If I go into a crisis it takes a long time for the effects of azathioprine to work again. I don’t believe that a neurologist can know for certain what to do. They judge according to the knowledge they have and what the patient says. I now feel it’s better for me to judge myself. I always carry pyridostigmine in case I need it. I know we’re all different and don’t suggest anyone else does what I’m doing. But it have to take the risk myself.
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In March this year, I wrote about how I was managing with pyridostigmine, by adjusting my dosages.but, it got to the stage where the side effects were no longer tolerable. I have now stopped taking it, and trying to see if I can get by with taking only azathioprine. So far, I feel better without the side effects, but at the same time tired all the time. We’re all different and have different situations with the type of neurologists we have. N my situation, I have to take care of myself. So far in the last 4 years, I have been through flares , but have not been hospitalised. It’s just a day at a time. Wishing all health which is manageable.
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I can empathise with you and everyone. I’m 70 years old now, have had MG for over 5 years. I was on azathioprine and Mestinon. I was just accepting that I should live with the side effects and count myself lucky that I could manage. Cramps, stomach problems, sweating and general tiredness on top of every day being different on bulbar weakness, swallowing and vision difficulties.. But then it became too much. I was getting cramps all over my body, even from just moving when sitting. So I stopped taking mestinon. I don’t have a neurologist because I moved to a new town a year ago and the neurologist who comes once a month won’t accept Medical Insurance. He wants cash up front. Anyway, I don’t have much faith in doctors so I decided to test if I can manage. And, the cramps stopped, no sweating. I am ok on just the azathioprine, except that I’m tired all the time. I read up on papers presented by researchers and believe that the mestinon stopped the normal work of “cleaning up” acetylcholinesterase enzyme does in the cleft of the receptors and this lead to the excessive cramping. So for now I have to live with tiredness. I feel like you do, but rather that than how I was before. I know we are all different and many of you have excellent neuros etc. This is just my life and experience.
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I‘m so sorry that pyridostigmine has this effect on you. I had difficulties in the beginning with cramps, diarrhoea and often feeling like I was overdosed. But with time I learnt to adjust my dosage and timings . I also began taking azathioprine, when my MG became really bad. It was like I was in a semi crisis all the time . Very frightening. But now I manage. Hope your neurologist can figure out a better treatment plan. Wishing you all the best
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People can’t understand the fear of being unable to swallow saliva because swallowing is natural and taken for granted by those who do not have Myasthenia Gravis. I recall the day I was choking and trying to talk but I was slurring. I rushed to my doctor whose surgery was just around the corner. The nurse asked me to wait as the doctor was not in. She couldn’t recognise my symptoms as a cause of concern. The fear I had of dying in the surgery without being attended to was really terrible. Saying that one would get frustrated is more of an understatement. What can I say? Having a crisis and in most situations knowing that getting treatment from competent medical staff is rare, is the most frightening experience we can face.
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<p style=”text-align: left;”>Hi Rudolph, I was actually in quite a bad state when I was prescribed azathiaprine and prednisone to supplement pyridostigmine. I am also tapering off the press until I stop them. But my MG symptom’s are being helped. As the doctors said, it was only guesswork on the cause of the sudden deafness. With our illness, so much can affect us, and every single one of us is different. So, we just have to learn and recognize our own situation.</p>
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I have hearing aids, but the one ear is totally deaf. I am managing with the azathiaprine now, apart from stomach issues, it seems to be helping. But I”m tapering off prednisone for 6 weeks and will then stop. I wonder if the azathiaprine will be a problem then. I’m 69 years old, strong in many ways and can still appreciate the ‘play’. It’s a way of looking at life itself. I do not have a local MG community whom I can relate to, so this is a good forum to learn and share. Thanks.
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Thank you for your post. I wasn’t happy to take the azathiaprine either but I was really struggling at that time. It seems to have helped me, but I will ask my neurologist about the alternative you mentioned. The Ent specialist ruled out acoustic neuroma. Now just have to get used to the strangeness of not knowing where sounds are coming from and poor hearing.
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There is someone I know who recently started being helpful. Bit I don’t know how to deal with things she says. She doesn’t understand what Myasthenia Gravis really is in spite of me explaining. She keeps telling me that she is praying for me and that I must have faith I will be cured. She also suggests home remedies to make the drooping better, like put cucumber slices on the tires eyes. The other thing is be positive and you’ll get better. I have tried to answer , but she won’t listen. She talks more. I don’t believe that she is being nasty, but nothing gets through. My MG is in. Bad state at the moment, and in a way she is the only person who is touch with my wife and being helpful. Any ideas?
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I can understand what you’re going through because I was also taking 30mg mestinon as you were. In the beginning I was okay, but then my eye drooping got worse. I was afraid of having a cholinergic crisis if I took more . I then self medicated and increased my medication to 3 x 60mg daily. My cramps were really bad and swallowing difficulty just before taking my next dose. O then took a tablet cause hyascine for the cramps. It helped. But my symptoms did not get any better. I hadn’t seen a neurologist for about 2 years, but it was too much so eventually I found a neurologist who could assist me. He explained everything about MG and the treatments etc. I am now starting on a new course. Mestinon still 3 x 60 mg daily, Azathiaprine 100 mg nice daily, and prednisolone on an increasing dosage every week until I get upto 60 mg per day. I believe that this might help, and will wait to see. His explanation was that a steroid and immunosuppressant together with mestinon should help, though it will take some time for the effects of azathiaprine to be notice. He also mentioned plasma exchange etc are normally for for a quick result during a crisis. I know we are all different, but I was really afraid to change to different meds or increases. I just accepted suffering with cramps and swallowing problem. Hope you can find a solution to help you.
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I was fortunate that my MG was in control with mestinon. But a few weeks ago, I had a lot of stress, and my one eye started drooping, and I had double vision. The only way I could drive was to close one eye, or tilt my head backwards to see through the drooping eye. I struggled, but managed to drive. We have a local WhatsApp group, and I was advised to start taking prednisolone to suppress my immune system. I also increased my mestion. It seems to have helped me, as my drooping is not as bad. I’m now still taking 20mg pred. Daily. It’s like guesswork in treating myself. I only see a GP,
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I have had both shots of the vaccine, and am now waiting for our government to approve booster shots. My opinion is that some protection is better than none. Having survived covid and know how I suffered, I would hope that if I get it again, this would help to make it easier. In poorer countries, we accept whatever we are given. In my case it was the Sinovac. We are also used to mandatory vaccinations from birth.
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We all have fears at some or the other, even in normal life situations. But, my worst fear at the moment while writing this is that of suffering from respiratory muscle weakness, and dying because no one will realize that is what my problem is.
I have had an allergy problem for a long time, and often had breathing difficulties. It was most prominent in the evenings , so I would take a cetirizine tablet. I think it’s only about 4 times in the last 40 years that I needed to use an inhaler. However, the neurologist who confirmed my diagnosis said that Myasthenia’s cannot use antihistamines, and that I should manage with a mild hay fever nasal spray.About 3 weeks ago, when the weather started warming up , by coincidence I began to have swallowing difficulties. I first thought that it was a cholinergic crisis, as happened before, and stopped taking my Pyridostigmine. I soon realized that I was wrong, as I started slurring and getting worse. I immediately took a tablet and was okay then except for the excess mucous causing swallowing difficulties, coughing and breathing problem.
My GP has put me on a nebuliser with salbutamol/ saline solution 3 times a day. Every time I use it , my pulse rate is very high over 100 upto 128, and my chest has a burning feeling like I have rum miles. My doctor says these are side effects of the treatment, but it will settle down.
I am really afraid that if it’s my myasthenia Gravis that causing my breathing difficulty, then it won’t come right. My wife and are old and live alone and even if I have an emergency which requires a specialist, we would need to drive 80 km to the city.
In these covid times, we need to test for covid before even entering the hospital. All this takes time, and we know of people who have died in the car park before being attended to. Dying because of struggling to breathe is like how fish feel out of water. It’s a nightmarish thought. -
I have a GP, but in January this year, he tested positive for covid a day after my wife and I consulted him. We then both became ill. We had two covid tests which were negative, and were told by another doctor to take paracetamol and vitamins, D, C and Zinc. Within 10 days we were very ill and were rushed to the ER in need of oxygen. We were tested again before being admitted, but the test was positive, and we were turned away as they had no covid ward. It was a Saturday night, and attempts to get help from my neurologist or any other doctors were fruitless. The covid ward in our general hospital was full.
Somehow we got through the night, and again I struggled to find someone to help us. Fortunately, an old English doctor who knew us found out from the hospital that we were covid positive. He then called us, checked our OS levels which were very low and offered to arrange an ambulance to take us to a hospital in the city. We asked him to help us, and he then arranged for us to be admitted to a covid facility which was not yet completed or open. My wife and I were admitted there in an empty warehouse, with new beds, oxygen and a nurse to take care of us. The doctor arranged the medication etc, and a kind family provided meals for us. Without his help we would probably have died.The point of all this is that there are situations which arise and specialists will not help. This is why I believe it’s good to have a GP who is familiar with our general health.
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By the way, just to clarify my use of different genders. The first doctor was male and the surgeon who operated was female.
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Thank you for making the point about self controlling pyridostigmine because it is a short acting drug. I recently stopped taking it because the side effects were too much. But I’m still taking azathioprine. When I started taking it, my neurologist told me that it can take months for it to become effective. He also warned me not to stop on my own. I now understand from your post that I could take a chance to stop pyridostigmine because if I felt symptoms returning, I can start again. But stopping another drug would be dangerous without supervision of my neurologist.
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Ocular myasthenia was the diagnosis, but I had continued trying to manage with other symptoms of generalised MG. Last year, 8 months after that post of mine, I crashed. My eyes shut, I had bulbar weakness, and choked every time I tried to eat. I couldn’t swallow. I would then go to the bathroom and try to wash out my mouth. I couldn’t gargle. The muscles were not working. The neurologist who confirmed the diagnosis would only see me if I paid an extra amount on top of my insurance. I hadn’t seen him since the diagnosis. I then saw another neurologist who immediately said that it was a misdiagnosis and incorrect treatment. He then put me an immunosuppressant azathioprine, and prednisone. That saved me. Unfortunately, the day after I began the new treatment, I went deaf in one ear, and had an effect on the other. I saw an ENT specialist who did a thorough exam with MRI etc . He said it was caused by my MG and the azathioprine. That’s my story. I’m tired. Every moment, every day is different.
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Hello Richard, thank you for sharing your experiences. I also stopped taking mestinon, and have been in a state of anxiety since then. I keep wondering if I have made a mistake and will suffer from all the symptoms I have had in the past. I stopped because I was having cramps in practically every part of the body. I could have a cramp from just moving about. It was too much. I also had stomach problems, and could break out into a sweat regularly. Once I stopped mestinon, these symptoms went away. But I think that fear is the worst part of myasthenia gravis. I recall the times I struggled to swallow, breathe, or see because my eyes would not open.. I am still taking azathioprine, in spite of feeling that I’m in remission. I cannot ask any doctors for advice. They don’t understand. I actually feel comforted by your experience. It’s like I’m not the only one going through a similar situation. Thank you.
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Hi Thomas, thank you for your good wishes. I think it’s a good idea to take the vitamin C and zinc. I did take them when Just before being hospitalized with covid 19 just over a year ago. So I’ll start again. All the best.
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Hi Thomas, it was only a possibility that MG might be the cause because hearing loss is known to be linked to our illness. But again, we are all different and the ENT specialist did say it may be temporary. So I do hope that we both improve. I know Bali is a beautiful place . Have a happy retirement.
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Hi Ronald, it looked you were describing me! Hope we can carry on without more distress. Wishing you, and everyone the ability to cope.
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Hi Gil, I also thought I was in remission once. In the beginning, my right eye was drooping, plus swallowing difficulties etc. I stopped taking pyridostigmine, really happy with life. Then 2 months later my left eye drooped, and even after taking my meds still remained drooping. Anyhow a week later it was under control. I realize that snowflake disease is even with symptoms changing from time to time. Currently I’m having breathing difficulties, and use a nebulizer. I think it will improve, but I’m not holding my breath( have to laugh sometimes,)
I wish you well. Take care Dev