Myasthenia Gravis News Community › Forums › Life Hacks and Tips › Mestinon Side Effects › Reply To: Mestinon Side Effects
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MemberHi 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.