Linda G
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I am 68 and first had a major MG crisis in 2010 after Swine Flu and was sedated, intubated and came out of ITU alive but unable to swallow for 18 month. I was eventually stabilised by Azothioprine and Predisolone from 2014. I had a few treatments before that, plasma exchange, IVIG which did nothing.Mestion did nothing while I was very bad, but has its significant uses. I have been fluctuating on high dose of 60mg daily of Prednisolone to 5 mg since that time but each time I start to have symptoms by 5mg to 7mg. I think this time I may just ask to leave it at 7.5mg as I keep reading on this forum of people still not having a stable MG with medication yet, and I am pretty stable. I also see they have updated the MyAware site about statins which might cause problems for MG patients, which I did refuse to take once as I read that some MG patients had problem, this was in 2017. They also mention 7.5mg prednisolone daily level is an acceptable long term dose if it cannot be tolerated lower. I did notice about 3 years years ago age 65 approx, after a few years of being at least a dose 5-10mg a day that my very, very short term memory was very poor. i.e. I would be taking my tablets from a packet as I had breakfast and if I was distracted by something on the radio, or a thought, I then could not remember if I had just taken a 1 tablet of the 2 azathioprine I was on for instance. I now put them in little boxes or put them all on a plate together ready to avoid a dilemma on this. I did read into this and I found the Prednisolone can cause short term memory loss so I put it down to that, as I had been on them for 10 years or more. After about 3 years now (age 68) my memory is getting worse with not being able to retrieve words I would normally have no problem with, although little often used words. So whether this is do to with natural memory loss due to age, potential dementia, or the Prednislone still I do not know. I also have very disturbed sleep due to neighbours in the gardens at night and humming noised in the flat above, I go to bed watching TV with my earphones on in order to block out noise and the agitation it creates. I am not getting the sleep I need for the last 2 years which is not good for the MG or potential dementia, so I am looking to to move but that is not easy. Complaining is a stressful option. But I think we all have to adjust as best we can, all react differently. The azathioprine has worked well for me though I have had skin cancer from it, but they all seem to have similar side affects. For instance I had a friend on azathioprine for a renal transplant for 35 years and she only started getting skin cancers after 25 years, and on the legs and back. Mine came after 7 years and on my nose and cheek. The Prednisolone gave me 2 cataracts after 5years.
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My main problem was not being able to swallow which meant Naso Gastric tube insertion every 3 months to be changed, which I dreaded, then I had a PEG tube. Which for 6 months I had it in I had an infection around/in the site. It was removed after 6 months as at last the medication worked. I have not suffered eye problems except a severely drooping eye for a month twice during summer and a stressful month. I also suffered arm weakness, slurred speech and finally breathing and being in ITU and on a ventilator at three different times. IVIG, plasma exchange did not work. I had my thymus removed but it did not cure me. Mestinon did little to help at varying times, but assists more with other medication. 60mg 3 hourly stopped me going back on a ventilator in conjunction with other medication. I was on Prednisolone from 60mg daily but as soon as my dose went down to 25mg or less my symptoms worsened, and it did not fully rectify them anyway. Eventually 100mg Azathiaprine has controlled it since 2014 and I have lived a fairly normal life since then. When we have tried to reduce my medication I start getting symptoms again. Even with the above Azathioprine dose, If my Prednisolone goes below 6mg I start having a problem. Having read of the many problems still suffered by MG patients on this site with still uncontrolled MG I realize how lucky I am, despite the extreme problems I have had. Because of this forum and what I have learnt, my aim now is to find a medication level where my symptoms are controlled again, with a dose as low as possible, but that still controls the MG, which seems to 6 or 7mg of Prednisolone daily and 100 mg Azathioprine daily (or maybe 75 to 100mg which I am currently testing) and accept the imperfections of that. Both medications have their imperfections/ side affects, but then so do all the other alternatives. So we are all” between the devil and the deep blue sea”, between side affects and the MG affects. I also found useful on this site a mention of the Tacrilimos medication for MG, although it is mentioned more for use for kidney transplant. This was suggested to me as an alternative to Azathioprine due to a very low white blood cell count and a recent (2017) kidney condition I developed and the skin cancers I have had due to the Aza. In the http://www.myaware.org site for UK MG it does not mention this medication at all, and I do not think it is used as a rule in the UK. In my own research and in the details on this site, it seem that it is used in conjunction with other medication, in japan I think it is steroids. It is Japanese developed drug and used as a first choice medication in Japan for Myasthenia patients I believe. After 2 years of thinking on it, I refused changing to this drug as it might still cause all the same side affects I have, plus I might still need prednisolone anyway, and maybe a higher dose. Worse, my MG might slip out of control that is currently controlled very well I realize now, have read all the stories on this site, So I thank you all for sharing, as it helps me to make a decision about my own situation as I hope my experience might assist someone. I am 68 and had MG since 2010 following swine flu, but was getting MG symptoms for 10 years before that, not realising I had MG. I mention this as some are ticking along without any medication and if one is younger that might be the better option. Due to my age and dread of going back to full on MG symptoms, I feel if I die slightly earlier following skin cancer lets say from the Aza or Diabetes from long term use of steroids, then I accept that. At my age I feel I would prefer the quality of life I now have, than change and find a suddenly lose that next week lets say, from changing a medication that is working, though with risks. We all have to make our own choice, from out own experience I think, the MG seems unique to us all. Maybe there will be hope as AI and other scientific innovations are making great strides in many conditions now, I have friends who have children with cystic fibrosis and treatment for that has increased significantly over the last 30 years. The same will be for MG hopefully.
myaware.org
Myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.
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I have been surprised and sorry to read how many suffer side affects and worse, no result or control of MG despite medication. I was having MG symptoms about 10 years before I went into a major crisis when I caught Swine Flu, a year before that I had been diagnosed but refused all treatment as I thought I would get on top of it with rest. Six weeks before the swine flu I had started a live in job and was under a lot of stress and was then having swallowing, speaking, head drop and weakness with arms, then I caught swine flu and ended up sedated and on a ventilator for a week and in hospital for 4 months as I could not swallow. I was on prednisolone for 60 mg alternate days but this did not work, but I was told it could take 2 weeks to work, so eventually I thought it was making me worse and I asked to reduce the dose. I refused the Azathioprine due to fear of side affects. I was on Mestinon 4 hourly 60mg and higher at times but it did not help the swallowing much, but the hospital also gave it to me as meals were brought or even afterwards, I did not realise this was meant to be taken at least 30 mins before food. I asked to be discharge and went to London to stay with a friend. After a month I could not eat or drink enough and ended up in ITU again and with NG tube, this happened three times and I had an NG tube in for a year and a PEG tube in for another 6 months. Eventually 60mg daily over 6 months started to work and the PEG tube was removed. Steroids do take time to work, I was not told this, plus I was not used to so many drugs and would not take more than 60mg and this was alternate days. I agreed the Thymectomy before this and after removal of the PEG I also agreed Azathioprine, I was warned it might take a year before it would work. I was fortunate I had no immediate side affects but I had 2 cataracts removed due to the steroids. Now after 9 years of Azathioprine I have had 2 skin cancers on my face and nearly zero white blood cells and it is suggested I change to another drug due to these other side affects. My steroids are 6mg I cannot seem to below this without trouble of some sort so I am gong to ask to keep it there. I have 100mg of azathioprine now being reduced to 50/100 alternate days to try and improve the blood cell count. I am also taking vitamin C and zinc, Folic acid and B12 as on googled and they say this helps low white cell count, whether it will or not I do not know, I checked with the consultant if it was OK for me to take. In 2017 I had renal failure (I had acute water retention) which turned out to be Nephrotic Synmdrome Minimal Change Disease which was resolved with 6omg daily steroids again for 3 months, then reduced over 4 months but when reduced to 5mg it came back again. They say this disease is usually in children and if in an adult then consider those suffering MG and other such diseases that are often linked, but not the reason for it. The Nephrologist suggested I try Tacrilimos which would keep the kidney condition under control and I would get off the steroids as well. Tacrilimos was developed in Japan and it is their first drug of choice for MG, but what I read in google is that it sometimes still needs small doses of steroids as well. Plus it also has a variety of the usual side affects the other immune suppressants have. So after 2 years of thinking about it, and also reading the experience of MG sufferers on this site, how after many years they are still not stable. I feel at 68 I am fortunate as I have these various side affects but I live a fairly normal life and pretty well. I do avoid infection risks and do not go out that much, or take precautions if I do, I virtually reverse barrier nurse myself. The skin cancer is an issue, but at my age I will have to die sometime and minor surgery can control it to a degree. If I alter the drugs I will STILL have the risk of similar side affects, and may destable what is stable, it is not worth the risk I feel….for me. Azathiaprine does have high risk of skin cancer but I have a friend who has been on it for 35 years for renal transplant and she has these removed from time to time, so one can survive this risk…but , we are all different. My main comment is, give a new drug a chance to work, 3 to 6 months at least, unless it is making you ill in some other way (I think hair grows back usually but not sure), maybe if the main MG drugs do not work, maybe ask your Consultant about Tacrilomos, as in Japan they do use it for most of their patients, with the possibility of support of a small does of Prednisolone or similar if needed. However, I have asked the myawareUk website about it and they make no useful comment on it, but provide details only on the well known ones. But if you are stuck in an unsatisfactory MG state then it might be worth considering. I think it is just not on the EU or UK standard/ recommended treatments for MG. I also have had IVIG and plasma excange which also did nothing for me. Mestinon did nothing while I was in MG crisis except once, after they gave me Neostigmine IV when in ITU, which have me almost instant relief, it was a wonderful reprieve, and after the affects wore off after 3 hours or so, to avoid my having to be intubated again they gave me 3 hourly 60mg dose over every 24 hours (plus the steroids I was also on at the time but not working yet). Neostigmime was only given by IV and the 3 times I had it I went into bladder retention and had to be catherised for a week. it also made my blood pressure go so low there was amedical staff panic, as with the Plasma exchange. I think was because the mestinon gave me very low blood pressure, as well as mild nausea in the throat, headache at times, diarrhea, excess saliva which was a significant problem when I could not swallow saliva, and moderatley severe cramps. At times when on higher doses, I used to feel like a xmas tree with fairy lights lighting the tree (my body) ad hoc like little blinkers of power on and off. However, it was all bearable, though difficult, the excess saliva and not being able to swallow was the most difficut to deal with.
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Treat With Respect – this was said to me during my first consultant appointment. I did not do this and though I had trouble swallowing, slurred speech it did improved= with rest. I refused all treatment feeling sure I would get over this and not have major problems. I found a new live in job, but after 6 weeks I could hardly hold my head up, only just eat, could hardly raise my arms over a certain level and my speech slurred. Then caught swine flu in this state and was rushed to ITU and could not breath. I was sedated for a week and after 2 weeks released into a ward and spent 4 months in hospital and 18 months with a naso gastric tube and then 6 months with PEG tube, mostly due to avoiding strong medication and not realising they take time to work. It was 3 years before I was stabilized and 3 visits to ITU in deep MG crisis, all my own fault to an extent. Now they want me to change my medication due to side affect, so the dilemmas go on. Do I change when I am reasonably stable and it all goes horribly wrong, or do I hope for the best and the new the medication is better than the current, but they all have similar side affects……. !!!
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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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Hi Barry, I am writing from the Uk. I think you definitely need a Neurologist with experience of MG and/or an MG specialist, and maybe get 2 opinions if you can, and research via google a little so you have an idea of what the immune suppressant drugs do, though they all have similar side affects. Many medical practitioners are still not fully aware of MG and its idiosyncrasies as it is deemed rare. I went into MG crisis following swine flu in 2009/10 and then 10 days in ITU and ventilator and then could not swallow for 18 months. I had been diagnosed with MG 9 months earlier , but I had diagnosed it myself before going to the GP following a google search of my symptoms of some years that had got worse. The GP seemed unconvinced when I asked for the relevant blood test but it came back positive. Before I caught swine flu I went to the GP to ask for sick note for a month as I had a relapse of swallowing and slurring of speech which was slowly improving and was trying to get a job. He refused. So I understand your distrust. Later I got a live in job and explained the situation to them but within 3 months of starting the job my symptoms increased then I caught the swine flu. // The problem with MG is partly due to its rarity and there is no standard treatment that will always work for everyone. After swine flu they put me on high dose steroids of 60mg and they said I would see a result in 14 days. I am not sure why they said this as steroids and many steroid sparing agents take sometimes take 3 months at least to get the full affect with some conditions. This made me think the steroids were not working after 4 weeks and I asked to lower the dose as I thought they were making me worse. I discharged myself after 2 months and moved to stay with a friend in London. I could not eat enough and was in hospital again and was having 60mg Prednisolone daily this time, and a year later had my thymus out. Due to the extended period on steroids (6 months) I finally could eat.  However, everytime the steroids went down to 20mg I would start to relapse. After 3 years I finally agreed to Azathioprine 100 mg daily which again can take 6 months to a year to work and steroids were gradually reduced to 5mg daily.  I then stabilised for some years until I had Renal Nephrotic Syndrome Minimal change disease and they put the steroids up to 6omg again which rectified the renal problem (water retention at increasingly dangerous levels). After a year the steroids were down to 5mg again and the renal condition flared up again. So up went the steroids to 6omg. The renal condition is usually only present in children, and in my research it is advised that if in an adult then to consider MG or other conditions. So now, the Nephrologist is suggesting I change to Tacrolimos as this will control the MG as well as the Renal condition and also stop the skin cancers which Azathioprine is renowned for. I have had 2, one on my nose and 1 under my eye. But I have a friend on the same drug for years for renal transplant, and has had these cancers for years and they just keep removing them ( and her sister also). I also have a very low white blood cells count due to the Azathioprine. So understand their reason for changing the medication, but I do not see any mention of Tacrolimus on the Myaware site or generally in the UK, though it was developed in Japan and they seem to use it as the first choice drug MG in Japan. There is a little research on it but not that much, though deemed perhaps an increasingly safe alternative for MG, but as far as I can see it looks like Steroids may still be needed. My neurologist has agreed to the change of medication but neither he nor the nephrologist  can guarantee I will not still have to take steroids still, or that the Tacrolimos will control the MG. Which means I might go into a crisis again, which I am always fearful I will not recover from properly, as drugs do sometimes stop working I hear. I still have to make a decision by April 23 maybe, but I checked with the dermatologist and she says they always default to controlling the primary medical condition, i.e. the myasthenia, and that they can control the cancers, and the rheumatologist said the same about controlling the damage to the bones that steroids do, they give me zolondronic acid IV annually for a couple of years when needed. But all drugs have their side affects and we do not know what will work for those with MG (or anyone really) until we try them. If you have not tried Azathioprine before it is a long standing tried and tested drug but needs 6 to 12 months before it works, 3 months might be ok. The only reason I have not come off steroids is because the renal condition flares up,but you may not have that problem, it is quite unusual and not necessarily related to MG. You also may not have the skin cancer side affect. But most of these immune suppressant drugs all have similar side affects, which is another reason why I am reluctant to change mine as the new drug may bring the same or worse side affect. I am stable and functioning and very wary of changing, as there are no guarantees and it is I that must suffer, and also to make the decision to an extent. With MG and many conditions, we are always choosing between “the devil and the deep blue sea” there are no easy choices, and as we get older (I am 67) I feel I cannot expect perfection in my health whereas medical staff may feel obliged by medical law or morally to try and improve the situation, but perhaps there is a point when we patient has to decide “this far and no further”. I believe 7mg of steroids is what our body produces naturally but I think there has been recent research that has said that even small dose of steroids i.e 5mg or maybe 12mg will have its significant affect over time. I also have had 2 cataracts due to steroids. It may depend how old you are also as to whether you want to risk staying on 12mg as I think 7mg used be the aim at one time. I would ONLY speak with Neurologist with some experience of MG and/or a MG specialist with regard to your treatment. When I saw my first consultant he said MG needs to be treated with respect, and it does. I did not dream in a million years I would end up on a ventilator 3 times and unable to swallow for 18 months. Now I am very careful of the medications I take, that I do not go where there is obvious infection risk, and whether I now do change my staple MG medication that is controlling the MG, and maybe I have been luckier than some, having read comments on this thread. Maybe try and speak with 2 consultants, google the drugs they suggest, and then go with your gut feeling. Maybe you decide to stay with 12mg steroids, but that does still have risks, for diabetes as well. Its always a dilemma. Incidentally, I have also had plasma exchange and IVIg several times with no affect, and mestinon when in my first crisis also with no affect. When in ITU or in hospital on 3  different occasions they gave me neostigmine IV which gave immediate relief of severe and dangerous symptoms for about 2 hours, which on the last visit to ITU they gave me this, and then they gave me 60mg mestion (via naso gastric tube) ever 3 hours and this actually avoided my having to me intubated again. They were going to give me a higher mestinon dose every 4 hours but the effect wears off. So I had asked for every 60 mg 3 hours as I had read of a Mother giving her 3 year old this type of dose and I think it gave a consistent low level assistance over a 24 hour period. But the hospital knew me quite well by this time and I had a very understanding neurologist, and we were all trying to work out how to control the MG. Which I had made worse as I delayed going onto the Azathoprine (and the various other options, cellcept etc) as I had never had a severe condition before nor been in hospital as a patient. I hope this helps and my apologies for it being so long. My MG became very bad because I resisted taking any drugs and then stress and life and infection occurred, Swine flu being the major trigger for the first crisis. I would get it under full control if you can with one of the immune suppressant drugs, while you are relatively well. But we are each different in our experience of MG and most medical professionals do their best, hopefully you can find one you can trust over time. Immune suppressants or steroid sparing agents such as Azathoprine, cellcept, etc, are designed to get patients of steroids altogether, but it does not always work as hoped, but it does with some patients. It is all trial and error, as someone has said in this thread, MG sufferers used to die, now we can live a relatively normal life and normal life span, once we are stable with the medications that work for us individually.