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Mestinon Side Effects
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Hi I have been taking Mestinon 3 times a day for more than 7 years now and have none of the side effects you are referencing. Basically Mestinon has been a bit of a lifesaver for me.
If I don’t take it I have difficulty swallowing but otherwise ok. I get CFS with my MG anyway and have pre taking Mestinon so I know that is not causing it. I also am very skinny but I have a few extra Auto Immune’s that seem to keep me slim. Hope you find a resolution to your issue.
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I just went through first round of Vyvgart. It worked great. No more symptoms. Lasted just over a month. Symptoms are starting to come back slowly. Will be starting second round in a couple weeks. Actually can’t wait. Works fast. Took two days to kick in after first trtmnt. Wonderful stuff.
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So far this discussion has mainly talked about MESTINON, as well as PREDNISONE that is a more dangerous side effect for me, that they were able to taper down and KILL.
I have been in remission for 15 months now. I have always taken 180 MGS (3 of 60) daily of Mestinon/Pyridostigmine Bromide and 2oo0 MGs (two 500 in am and two 500 in pm) daily of Cellcept/Mycopenolate Mofetil. I have had only my original diagnosis dosage of 5 hours for 5 days of IVIG treatment once. I have had no side effects, besides afternoon fatigue, and acute onset insomnia, since they killed my PREDNISONE. So I guess this CELLCEPT is keeping me alive. Talk to your doctors, and join and ZOOM with MG SUPPORT GROUPS. They will tell you who the GREAT MG DOCTORS are, and what info on your ZOOMs … you find works for the other ZOOM MG members, that you are meeting in your online ZOOMs. I do not know why I am in remission, but these drugs work for me … and I had three MODERNA Shots for the “PLAGUE from CHINA” .. and no ill effects. BE INFORMED TO STAY ALIVE.
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Hi Sawyer. It’s the same old crap with us all, BUT if you take Mestinon ask your Doc if it’s OK to take a Probiotic, you don’t need the most expensive one, but it will help w/stomach bloating and the craps. I take a PB before my 3 pills of 60mg each.
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Because I’m currently at or above 20 mg Prednisone (I’m at 30 mg right now), I have to take Bactrim (a general antibiotic allowed for MG). I’ve always dreaded being at/above 20 mg because the Bactrim has terrible and very painful gas and bloating side effects (much worse than Mestinon, at least for me).
I got desperate and decided to just try some over-the-counter anti-gas medicine, and the CVS pharmacist, when I asked, said Gas-X (i.e., Simethicone) was the best. I of course first checked a drug-interaction site (e.g., WebMD or Medline) before taking the first dose. I also made sure my neurologist was okay with it.
I take the Gas-X with the Bactrim in the morning, with some food (applesauce or a banana). It has helped me A LOT. No more spending 3-4 hours in the morning running back and forth to the toilet, and unable to leave the house as a result, on the three days each week that I’m required to take Bactrim.
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I’m very surprised that you were prescribed Bactrim it’s virtually never used in the uk now.
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I am sorry that you are experience such. I am not sure what a “high does of IVIG” means, nor if/how it impacts you, ie. are these symptoms during/after IVIG? At any rate, I love my NeuroMuscular because she is leading edge in research and her treatment for me is the exact opposite and very successful. High doses of Mestinon can have bad side effects and her research indicates that low doses are more effective in that they work on the body more similar to a homeopathic action. I am on 30 mg 4 x day and it has worked wonders for me without side effects. I am on IVIG for CVID and at the highest level I can be on for my weight, as IVIG is by weight as well as by the blood labs. So I get 40 gr Gammagard IVIG once every 2 weeks which restores my most of my IGX levels to within the normal range with the exception of IGA, which is still quite low. While my weight would allow an increase in the dosing, my labs do not in that my IGG is just a bit over the top of the normal range. So many factors must be reviewed in my opinion. My Doctor is Charlatha Nagar out of the Chicago & Glenview area and she is a presenter requested by the MG Assoc to present in their webinars, so qualified and vetted by them. Hope this helps.
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I’m currently in the middle of a moderate Bulbar MG flare-up. The following is what happened when I changed my Mestinon regimen about 10 days ago.
My Neurologist had me on 60 mg Mestinon three times a day: morning (6 a.m., noon and 6 p.m.) and then 180 mg Mestinon ER at bedtime (around 9-10 p.m.) I was getting upset and frustrated when I woke up in the morning due to the severe and painful muscle cramps, esp. in the legs/feet. I convinced her to let me replace the 9 p.m. 180 mg Mestinon ER with just another 60 mg Mestinon at midnight. Her big, but only, concern about my idea was the expected loss of sleep and the consequential side effects of insufficient sleep.
When I told her that, since I always got up at least twice during the night anyway to urinate (side effect of 180 mg Mestinon ER or maybe the 30 mg Prednisone), I would just go ahead and urinate at that time since I was awake taking the (proposed) 60 mg Mestinon, thus replacing one of the urinate-only wake ups. So she let me try. Well, I’m so happy I thought of it because it’s made a huge difference for me. Now when I wake up (for good) in the morning at 6 a.m. to take my first 60 mg Mestinon dose of the day, I have very little, if any, muscle cramping and no pain!
Secondly, before the change, my MG symptoms at 6 a.m., especially the swallowing, were more severe than at any other time of the day. I think this is due to the weirdness of the 180 mg ER Mestinon, but I don’t know why. With this new regimen of 60 mg at midnight, I now feel even better at 6 a.m. than during the remainder of the day, with no problem swallowing the 6 a.m. Mestinon and other meds taken at that time.
Also, now my daily Mestinon amount has dropped from 360 mg to 240 mg. Yay!
I’ve noticed, especially now, that 60 mg Mestinon takes about 30-45 minutes to become fully effective and starts to wear off after 4 hours or so, but still fairly effective up to 6 hours, the time I take the next dose. The better-balanced levels of Mestinon throughout the day and night makes eating meals easier to schedule (to avoid choking) and hours 5 and 6 (of the 6-hour periods) are easier to anticipate and navigate with respect to eating and activities.
Please note that all this info is based on just my experiences and not necessarily applicable to anyone else. I’m not advising anyone to try this. But often one must be their own advocate, as you know, because Neurologists don’t usually think or know about some of the more subtle and variable effects of, in this case, Mestinon, that each of us experiences.
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Hi Sawyer, I too am surprised you are being treated with IVIG after 3 years, this was only given to me when I was in MG crisis and in hospital and in ITU on ventilator and it did not do anything for me, nor did plasma exchange, though some have had miraculous recoveries from this. I had my first MG crisis in 2010 and had was unable to eat for 18 months with a naso gastric tube for 12 months and a PEG tube into my stomach for another 6 months which always had an infection in it. At first in 2010 they tried Mestinon 60 mgs 4 hourly gradually raising it to 120mg at which point I started getting palpitations and mucous when coughing. I was just recovered from swine flu so after the first 2 doses of that dose with those side effects I refused to take any more at that dosage. On the high dose of 90mg it did give me diarrhea, a lot of saliva and fleeting nausea at times,but it was bearable and this is the key perhaps, what is bearable. I had 90mgs for a while after that but it still did nothing and I could not eat or drink. However, the hospital would be very late with the drug round at meals and Mestinon takes at least 30 mins to take affect and wears off are about 3 hours. I did not know this at the time but found in the afternoons about 3 pm I could eat a yoghurt almost. As someone has said on this thread , read into what you are taking and what others experience. I have realised for instance from reading on this site that I am quite lucky to be stable on the medications I am on and I may not therefore make the medication change they want me to make to Tacrimilos. I found at one time after reading of a Mother maintaining her child of 4years old with MG that she had success with a 3 hourly mestion dose. When I was in ITU just off a ventilator the doctors were going to put me on 4 hourly 90mg and I asked if I could have 60mgs 3 hourly over 24 hours which they allowed and this prevented the fluctuations of the mestinon strength and it eventually prevented me going on a ventilator again. I was also 60mg of prednisolone daily at the time. Later I would get the predinsolone down to 25mg daily but symptoms would return. I also had my thymus removed. After 3 years and 3 MG crisis I eventually agreed to 100mg daily of Azathiaprine which stabilised me and I was gradually weaned of Predisolone to 5mg daily but now always seem to have problems still if I go below 5mgs Prednisolone and they are suggesting I change to Tacrilomis as I also developed a renal condition in 2017 which was treated with 60mg Prednisolone. They say Tacrilimos will control the renal condition and the MG, but having read into Tacrilimos I have found it is not used in the Uk for MG as far as I can see. Mostly it is used in Japan where it was developed and it is their fist choice of Medication for MG there but often needs Predisolone as well to control the MG. So my feeling is that I could be back to square one if I change and may even be on a even higher dose of predisolone than I am now, plus Tacrilimos may destabilize the MG or not work. All the drugs for MG (or any condition) seem to have similar side affects, the new drugs may be diffent. Azathioprine can cause skin cancer of which I have had 2 in 10 years (nose and cheek) but I have a friend who has a been on it for 40 years and her sister, for renal transplant and they have had skins cancers over their body which have been removed successfully over they years, they are in their 60’s now. So I am hoping I will not have serious problems and the Dermotology say they can control these cancers to extent. We are always caught between the devil and the deep blue sea with regard to controlling MG and the risks/side affects of medication. As my neurologist has said, no one can say how each patient will react to a medication and we do not know until we try, but then again I am not sure I will try Tacrimilus as I am stable and have a lot to lose. With your situation you may want to try something else as you are not stable and maybe do not have a great quality of life yet? With Prednislone I have had two cataracts removed and borderline diabetes (though at my age of 67 this is not unusual and started MG around age 55)) and I have had to have zolonondronic acid IV annually for my bones as predisolone weakens the bones as well, but the ZA also can also cause damage to the jaw bone and can allow infection following invasive dental treatment like extractions or possibly root canal work. So I was due to have a 5th treatment after 8 years but have just cancelled this as I have had tooth extracted in December and then in February another tooth problem occurred and I feel the risk is too high, though not having it has risks as well. I also saw on You tube 2 different doctors on saying that ZA is a very strong drug for preventative issue. There are others issues to this, a friend also had a 5th ZA IV and said she felt really ill after it and regretted taking that one, but the point I am making as well is to read into the options, what others have experienced good and bad, try and get used and understand the blood results and new drugs so that you can take control of your condition and what is best for you ad the risks you want to take. Which is hard at first, I really feared starting Azathiprine and it took me three years to try it but I had no stomach side affects, hair loss etc but the skin cancers later obviously, but I make my choice as described. After the Thymus removal it can sometimes take 2 years and some patients have complete remission so we we tried halving my dose but my symptoms started coming back after three months so that was the end of that hope! I too think you should try a different neurologist or ask if he has any suggestions for a different medication, the http://www.myaware.co.uk site has a list of medications commonly used and other info, read the whole site. This is rather long my apoligies, maybe some little peice if info might assist. If your quality of life is not good, do not give up, I thought I would never get better, but I did, but we have to take calculated risks to an extent.
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