Mestinon not working
Hi everyone!
I am having problems with Mestinon which I never had for 10 years. After MG crisis and plasmapheresis, Mestinon is not working like before. I take it to regain strenght but instead in many occasion it causes my symptoms to be worse (fatigue, weakness in neck, arms, legs, fasciculations, heavy and difficult breathing, tearing...). Almost as I am overdosed but I do feel week without it (now I am constantly week, with or without it), I don't know what is happening. I am currently on steroids and rituximab and now I take half of tablet of Mestinon few times a day. The worst part is breathing and torso weakness ali the time. Has anyone experienced something like that?
Thank you!!!
I had terrible trouble with muscle cramps on pyridostigmine (Mestinon) and found that I did better with more natural solutions. Vagus toning breathing helps me some, but I now use ashwagandha and cordyceps militaris daily to manage my fairly severe gMG. I went from often being unable to walk 10 steps and sounding like a drunk while having double and stacked vision daily to having much more predictable strength and endurance with only occasional short flares. Some of this is probably due to other factors but I've come to be a lot more unafraid of trying to problem solve for myself as I've researched. Astragalus is indicated in much research as helpful in similar ways but I found it doesn't help me much, so, you know, much of MG seems to be very personal and trial and error, for me at least, did help.
Hey anyone using the new vivgaurd treatment how is it working for you. Just got approved for treatment will be doing testing soon. Is there any prep involved.
Hi there! A few community members have share their experience with Vyvgart: https://myasthenia-gravis.com/forums/ultomiris-vs-vyvgart-1, https://myasthenia-gravis.com/stories/my-vyvgart-experience, and https://myasthenia-gravis.com/stories/10-week-update-vyvgart. I hope you find their stories helpful! - Kaitlyn (Team Member)
Hello everyone I have been diagnosed with GM about 30 years ago had my first crisis this past January where I ended up in ICU for a week hard to breathe all the symptoms oxygen and the whole works something I wish I know one but I've been on mastanon since day one and usually I take a half tablet of increased it now until increase that for one tablet about four times a day that helps helps me a whole lot you may want to talk to your doctor about getting an increase I don't do so well out in the heat with that medication because it has a tendency to make me sweat a little bit so you may you know cooler months or better for me using the medication that's the only thing I've used I am currently interested in using the gift card I've seen commercials on it trying to see if I can get into that program has anyone tried that or thinking about using the gift card as a alternate treatment please let me know thanks
Hello! Thanks for sharing. Mestinon can lead to worsened symptoms if the dose is too high, so typically, patients are started with less and increase if no improvement is seen.
You may resonate with this article and discussion about mestinon side effects, https://myasthenia-gravis.com/living/starting-mestinon-expectations, https://myasthenia-gravis.com/forums/side-effects-from-pyridostigmine-mestinon.- Jodi, Team Member
Hey! I am so sorry to hear you are enduring this problem. Did you have a recent MG crisis and plasmapheresis? My guess is that what is happening is your body is getting too used to one of your medications. The treatment is potentially no longer affecting your body in the same way, causing your symptoms to be uncontrolled. This could be steroids, rituximab, or mestinon. How long have you been on the steroid and rituximab?
- Jodi, Team Member
Rituximab generally works best with those positive for MuSK antibodies, which could be the problem. For AChR positive, generally Eculizumab (brand name Soliris®), Azathioprine (brand names Azasan®, Imuran®), Mycophenolate mofetil (brand name Cellcept®), Vyvgart™ (efgartigimod) do best.
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Your body may not like how high of a dose of mestinon you take, and you could be overdosing, as you mentioned. However, I am unfamiliar with this happening after several years. Typically, the body would start showing less response than more reactions after years of using a drug at the same dose.
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The symptoms you are currently experiencing, minus the bulbar symptoms like before, could suggest a new condition causing them or long-term side effects of the steroid. "Some of the potential side effects of steroids include:
- Angioedema: This refers to severe swelling in the airways, mouth, and other regions of the body. Angioedema may make it difficult to breathe and often requires hospitalization.
- Bronchospasm: While steroids should help a person breathe more easily, it is possible a person could have the opposite reaction and experience a bronchospasm. This is when the airways contract and narrow, making it harder to breathe.
- Pneumonia: Using inhaled corticosteroids can increase a person’s risk of developing pneumonia, which is a serious lung infection." https://www.medicalnewstoday.com/articles/323453#risks & https://www.drugwatch.com/prednisone/side-effects/.- Jodi, Team Member
Dear Jodi, thank you! This problem with Mestinon is still ongoing. I started to test dosage again yesterday to half a tablet every 4 to 4.30 hours, I feel awful: extreme nausea and urination, weakness of my limbs, short and shallow breathing with huge chest weakness to feeling of choking in my throat, tearing and hypersalivation, blurred vision and headache. Somehow I am starting to believe that I am overdosing myself (always in this circle because all of these symptoms start to occur aproximately 30min after taking it and it lasts for several hours, starts to fade away, I start to feel weak and take next dose again and we go back from the start) and that weakness which I have is because of long term high dose steroids on which I am still on... this is just awful. I will try to take 15mg of Mestinon and see... thank you once again 😀
