Michael Chiesa
Forum Replies Created
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I have same issue when standing at sink or workbench. If I lean over to brush my teeth I can’t straighten back up without intense pain. I didn’t think it was attributed to the MG but have to wonder now.
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I just finished first round and am quite disappointed from results. I deliberately didn’t read any of the side effects but noticed slight headache and fatigue after first infusion which could be anything. After second noticed chest pain and back pain which lessened after a couple of days but came back after third. Did not have any issues after fourth infusion but fatigue still worse. I will probably discontinue treatment since I see no need to introduce more drugs especially without any improvement and since it is fast acting and requires constant treatments results should be quick as most people see. I will go back to cutting back prednisone though. Currently on 20mg daily. Cut back before and got to 5 but went into crisis. I’d like to get to 10 and hopefully get rid of excess weight.
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I just completed my third dose of first round. I was hopeful since many results posted are positive. Unfortunately I haven’t seen any changes except for the worse. After first dose had minor headache and nasal congestion. Nothing that couldn’t be easily tolerated. I was also extremely tired but attributed that to just being a bad day. After second treatment same issues and now after the third it is worse, especially the fatigue. I will finish the round but unless I see some changes for the better will probably stop at that. I have already tried IVIG as well as plasmapheresis without success. Glad it’s working for many at least.
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I am obviously in the minority since my time period from symptom to diagnosis was 24 hours. I experienced double vision and went to my primary. He immediately sent me to an optometrist who was sure it was MG before any testing was done. Same day it was off to neurologist, started on Prednisone and Mestinon which helped but did not totally clear things up. Went through months with eye patch and effects of Prednisone, mostly weight gain. Went through some difficulties with chewing and general weakness. Chewing issues cleared up but weakness lives on. Had a couple of crisis issues, in hospital having to be intubated and have gone through IVIG as well as Plasma Exchange, have since dropped both as no real improvement was noted. Finding a good neurologist is the most difficult problem, two had left the area and I went through another due to communication issues. She told me she treats every MG patient with the same regimen even if they are stable. I wasn’t willing to go backwards so that relationship didn’t work. Finding a good neurologist as well as other doctors who understand the disease and take the time to learn about it is crucial. You need to be your own advocate especially when it comes to drug interactions. It’s a long and bumpy road and could have many detours.
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My neurologist suggested taking it but I stopped after a year. Saw the warnings and didn’t notice any difference one way or the other. Need to go by what you are feeling, no one size fits all as we know. I was given Cipro and it is a Black Box Warming. Both Neurologist and Primary said don’t worry. Developed breathing issues so I tend to err on the side of caution with all drugs. Need to be your own advocate.
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That’s encouraging, it seems there is still hope. Once first round finished they can do another for awhile but so there’s time to decide.