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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.