Jack Stayton
Forum Replies Created
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I can only say that Prednisone has some bad side effects, like medically induced diabetic type II. i was on it for a few months up to 60mg at the end. I now take Cellcept instead. I don’t really know what it does but I take 1000mg morning and night plus 240mg Mestinon daily. I’m stable but get run down after doing any physical activity. I am positive for binding, blocking and modulating AChR but without MUSK.
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ADJUST YOUR MEDICATIONS
I found that there is no particular set of what should be prescribed for MG. Reading these forums I see several different kinds of medications as well as different doses we are taking. I’ve asked my neurologist about that and there is no answer. I have been told that there is no test that will tell me how bad my MG is. My tests for AChR and MUSK should set some kind of level for a prescription but they don’t track with what I’m taking. My symptoms are mild, if sometimes non-existent, but I have been taking about the same amounts of Mestinon and Cellcept that many others are taking, i.e., 4×60 Mestinon and 4×500 Cellcept. I’ve actually reduced my Mestinon to 3×60 and Cellcept to 2×500 and I can’t tell any difference in my symptoms. My neurologist said OK, let’s try that for awhile. It doesn’t seem like a science to me. Does it to you?
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I look for the Brach’s jelly beans, black licorice. Of course there is the candy corn too. When it comes to what I’ll eat, there isn’t much I won’t eat 🙂
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I guess my first symptom was weak legs. I just dismissed it and went on with life. After something like a year I was driving home on a 4000 mile trip pulling my 5th wheel after a 7 hour drive. I got into heavy traffic and suddenly got double vision. I could not see the road nor the tons of red lights from traffic. I yelled at my wife (yes, yelled) and told her to grab the wheel and guide me to the first place I could pull out of one-lane construction traffic! We succeeded without a wreck. After some 30 minutes I recovered enough to get us where we could stop for the night. The next day I was better so continued 600 miles to home. I saw my Endocrinologist on my regular appointment. She recognized my symptoms and sent me to the neurologist who made the preliminary diagnosis and ordered tests for AChR. The tests came back positive for Binding, Modulating and Blocking antibodies. My neurologist immediately put me on Mestinon and referred me to a Neuro Ophthalmologist. She put me on Prednisone which caused me to develop diabetes. After she tapered me off prednisone she put me on Cellcept. The diabetes abated and I continue on Mestinon (4 per day) and Cellcept (4 per day). I continue my daily activities but do them more slowly. I have never had any more double vision but my arms and legs are weaker and fatigue quickly.
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Michelle, I’m interested in following your journey. I too am in NM and have asked for a referral to Mayo. So far I have not been given one, however I am being referred to UNMH so will see if they have a neurologist familiar with MG. I think I have a mild gMG but I find out more on this forum than I get from my current neurologist. When I first went to him he referred me to a neurologist that specialized in MG but after about 4 months she closed her practice. That was in 2019 and since then I have only seen my assigned neurologist once! So good luck.
Jack -
Despite my neurologist’s recommendation to NOT get the booster, I got it just over two weeks ago. I had no reaction to it other than a sore arm for a couple of days and tiredness the following day. I still don’t know why my neurologist said not to get the shot, he did not offer an explanation nor justification for his remarks. You might figure I don’t trust him! I learn more from those of this forum than I’ve leaned from him in 3 years. Thank you all.
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I have been on Cellcept for about two years. I started on it as the neurologist was taking me off Prednisone. I have not had any problems with it nor do I take any blood tests because of it. Why are you having to have blood tests?
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I was diagnosed about 3 years ago after having double vision while driving on a long trip. I was immediately put on Mestinon 4 per day and referred to an MG specialty neurologist. She started me on Prednisone and gradually increased it to 60mg. That caused me to become diabetic (Type II) and put me in the ER when unknowingly my glucose hit 565. That caused her to back me off the Prednisone over a couple of months and put me on Cellcept, 500mg 4 per day along with the Mestinon. My glucose is now under control and I no longer take insulin.
I’m now with my in-network neurologist after the MG specialist closed her practice. He has made no changes to my medication nor given any advice on Covid shots until recently. I got my Moderna shots in March this year and am waiting for Moderna to announce a booster.
Based on the comments in this forum, I asked my neurologist if I should stop taking Cellcept for awhile after getting the booster. He replied he didn’t think I should get the booster and NOT to stop the Cellcept. I’m at a loss to know what to do.
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Paul,
It sounds like you have the same Neuro that I do! Same symptoms and I am positive for AChR Binding and Blocking as well as Modulating. If you haven’t taken the blood test for these you need to. As soon as the tests came back my Neuro put me on Mestinon (Pyrodostomine) and later on Cellcept. The Mestinon stopped my double vision almost immediately. He referred me to a specialist Neuro for MG and she put me on Prednisone and ramped me up to 60mg on it. That caused me to become diabetic Type II. As soon as that happened, she ramped me down to no Prednisone and that is when I went on Cellcept. I’ve been on both since spring of 2019 and am stable. I don’t get much from my Neuro now, no blood tests or infusions.  He doesn’t explain much now that I am stable and I haven’t seen him for over a year. I’ve tried to get another referral (the first one quit her practice for a sabbatical) and although I was promised (more than once) a year ago he would do so it hasn’t happened.
The blood test I mentioned shows “Approximately 85-90 percent of patients with MG express antibodies to the acetylchloline receptor (AChR), which can be divided into binding, blocking, and modulating antibodies…..”
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More: Acetylcholine Modulating Modulating, Binding and Blocking (AChR. Also Musk AB. These are the definitive tests for MG.
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Have him/her test for Achr.
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I’m interested in what blood work you get done every 3 months? My neurologist has never ordered a blood test since my original AcHR tests in 2018.  When I ask he tells me there is no test that will tell me how I’m doing! I’ve thought all along that he is wrong…worse than wrong but I get nowhere.
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Wow, I’ve never heard of LRP4 and anti-titin. My neurologist has never referred to anything like that. I’ve been told I have both Binding and Modulating Achr and do not have MUSK. I keep learning on this forum, thanks.
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I have to ask, how do you get tested for antibodies? Do you redo the original diagnostic tests for MG? I asked my neurologist to tell me how I was doing on my meds to decide on a change of medication or determine if ever go into remission and he told me these tests don’t really tell you the severity of my MG. I keep reading from some of you that you get tested quite frequently so please tell me what you know?
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Thanks David. I think I will get the booster and would like to get another MG specialist. However it seems this one is the only one within network. I am going to check with the VA. I know they have neurologists but don’t know yet any of their specialties. I’m stymied why my doc doesn’t want me to get the booster. But he doesn’t monitor my condition at all. I haven’t seen him in over a year. I see his assistant, a pharmacist, more. She scheduled me for an IVIG earlier this year and then my insurance refused to pay for it. I don’t understand that.