Hello not been on for a while just trying to find out if anyone has heard of steroid myopathy and if so how long does it take to get it under control iv reduced my steroids to 32 1/2 eod and still got it, its taken over my mg has anyone any ideas about this.
im not taking any other treatment now only mestinon and the other etc etc to go with them all, iv been told iv got refractable mg and cant get it under control I just feel i want my life back even t a certain degree
Any advice welcome

Hi,

I have the same MG as you and really struggled on the steroids. I got cushings syndrome and had to come off the steroids quite quickly which wasn't easy to do.

I have managed now to get down to 2mg from 70mg - it as taken me about 12 months.

I noticed though that when I got down to about 15mg the symptoms did ease a lot and then at 10 they were better still.

Like you have said the problems the steroids caused me was as bad as the mg.

I am now just managing on cellcept and the occasional mestinon, which I was or should I say had to reduce as well.

You will get there - there were times when I thought I wouldn't, but I have - it's not easy, but just try and take one day at a time.

Just a question - why are you with refractable MG only on steroids and mestinon?

Carol

Hi Accept
A belated welcome to the forum from me - I have sent you a private message.
Dusty

carol IV got refractable mg means that it doent react to medication iv tried azaphiaprine, methatrexate and cell cept and they dont react to the tablets im just taking mestinon every 4 hours and reducing steriods now on 32 1/2 eod so im feeling rather s--- at the moment

thanks carolo iv got refractable mg because it doesnt adder to the rejection tablets iv tried aza methatrezate and cell cept and they all dont work my gp said its called refractable mg i was on 95mg of steriods and im now down to 32 1/2 eod but really feeling s---- lately but my new neuro is brilliant its like my bodys addicted to the steriods as iv been taking them at a high dose for 6 years

sorry dusty having problems logging in so cant get your message my e-mail address is This e-mail address is being protected from spambots. You need JavaScript enabled to view it. thanks

hi,

have they tried ivig or plasma exchange and did not work?

Hi,

My neuro described it has hard to treat and not as treatable. This is one of the reasons the steroids were brought down and told to eventually stop - now down to just 1mg. The reason being he believes they become counter productive. Also the mestinon doesn't help much either - actually sometimes makes things worse.

The cellcept - well to be honest I'm not sure if working or not as I feel a bit better but could be due to the decrease in the steroids or the mestinon or both.

Wow carol, i always read your posts about cushingoid symptoms with interest and imagined you with a huge moon face like mine but you look really great in your picture, only spotting it now.

There is obviously hope for the symptoms to disappear so! Im feeling much more optimistic because i always imagined you were still overweight with a round face like you have described in other posts.

Im down from 80 daily to 25 every second day now and not getting any smaller..... Still have a giant head which i hate. Hopefully i will reach a point soon where i see a change.

Im on cellcept too, only a few months yet.... You sound just like me but a good bit ahead so i eagerly read what you write!

Hi,

I posted a while ago that I was too vain to post a photo. I still dont feel great but as I also posted early on about looking like Shrek's wife - I dont feel I look like princess Fiona anymore either.

Yes, its took a long while to feel 'normalish' again.

You too, I'm sure will soon notice the changes as the steroids start to decrease.

The cushings was awful - strangely distributed fat - hard lumps of body fat - mostly on my upper body - particularly my upper back with a hump and very round shouldered. That thank goodness has gone. I'm still a good 1 1/2 stone heavier than i was, but getting there.

To be honest at one point the big moon face was the least of my worries.

I was fat, hairy, depressed and very bad tempered and over emotional. As the steroids came down a lot of these 'problems' also got less.

I think you will need to at least get down to about 15mg steroids or less to really notice a big difference - but you will get there. Just take a day at a time and try to think its worth it - I didn't at the time to be honest but looking back I wished I had.

Carol x

Well you certainly look like fiona to me and nothing like shrek!

So when you got to a low dose of steroids did the fat just disappear or did you have to work at it, did you adjust your diet and increase exercise?

Luckliy my appetite is not big at all (i know steroids can make you hungry but this didnt happen to me, otherwise id be twice as big!)

Im not great at the exercise bit though, feel tired after a day of work, as i said in another thread its more a general tiredness, not tiredness in my limbs or anything, havent quite figured out if this is mg or just still not recovered from hospital but thats months ago at this stage.

Anyway, getting off track here, just wondered about whether i will have to help the fat disappear or will this happen to some extent on its own....

I think i have the back fat you had too, i have a big tummy also and of course my face and neck just melt into each other now

You are totally right though, without steroids i would be in a much worse off state... Very greatful for them! Its just that i dont look at myself as frequently as those around me do so its taking me longer getting used to my giant current self, eveyone around me has just accepted me how i am, i need to catch up!

Thank you.

No, a lot of the fat just dissappeared, but I am trying to eat less and properly. Having more fibre and protein than before and lots of fruit - especially bananas.

I cant exercise much due to the fibra and arthritis - but I potter about the best i can.

Everyone else just said I didn't look much different - they were terrible liars but at least they just accepted it and complimented me when things started to look more normal.

You will probably notice it come off as the cellcept kicks in and the steroids reduce.

Carol (I mean Fiona)

How long did it take for cellcept to come into effect approx. I know it is different for each person as is MG etc. I am waiting to start, but GP will not prescribe as it's an unlicensed use for MG. So I am waiting for the Neuro to authorise. I really need to get steroids down currently 50mg/day.

Hi huw,

The cellcept took about 6 months or there abouts. For me when the steroids started to come down I did feel somewhat better - not great as I still suffer fatigue quite badly, but the mood swings and inability to cope was much better. I still cant walk far and eating is sometimes a problem, but mentally I am far more positive.

Carol x

Hi Accept my daughter has steroid myopathy due to taking steroids most of her life due to being chronic acute asthmatic .
Unfortunatley there is no treatment for it only short periods of exercise to keep your bones in there joints and the muscle supple , but if your steroids are being reduced then there is a chance it will go away .
Sorry i couldnt be more positive and i know that exercise and MG dont go togerther well as at the moment my MG is being a pain in the rear end .
I hope that this finds you well and helps a little .
Also medical thinking is changing all the time just because there no treatment today doesnt mean there will none tmorrow .
Cheers Sarazeff .

thanks for your reply i know its going to take time but iv now been told to reduce my steriods b 1mg a month and i know it will take forever,iv learnt even after 6 years thats its up to me to learn to handle the illness no one else can do it for me but i feel that im not getting there every day different

Hi Accept

I tried emailing you at the address that you gave me earlier in this thread but it failed to deliver; the message I received was as follows:



Perhaps send me another email address? Or let me know if you can now see your private messages on this forum and I will resend you my original pm.

Dusty
P.S. I've resent my pm to you anyway; hope you get to see it.