I've had real trouble getting below 20mg a day. There's too much going on in my life at the moment to have another go, but I'll be reducing again in the autumn.

All the advice I have heard is to go very, very slowly the lower you get. Many don't get off the steroids altogether.

As the chairman has pointed out recently the key is making sure new receptors are being formed slightly faster than old ones are getting attacked by antibodies -- when the two rates are close any small change can result in a big difference in symptoms. Also you can't change the dose too rapidly 'cos it can take a while before you realise you have overdone it.

On the plus side, the side effects from a dose of 10mg every other day are likely to be minimal -- I know i'd be delighted if I ever get it down that low.

To answer your original question, i'd expect that the dose would be reduced 1mg at a time -- probably less than that as you go below 5mg. Whatever, all this should be done in conjunction with a neurologist.

I finally stopped taking steroids in April...it has taken me 8 years to get off them. I had to take cyclosporine and azathioprine to enable me to get off the steroids.

I can't remember exactly how long it took me to get from 10mgs to zero but it was probably at least 2 years. Unfortunately it takes as long as it takes! If I felt any kind of return of symptoms, even if it was just a hissing sound when I was using words with s in it I knew that the symptoms could possibly reappear so I would stop reducing at that level of steroids for a couple of months at least until I felt that everything was ok again, then reduce another mg. Or alternatively, if the symptoms I felt were more than this I would increase the dose back to the previous level where I felt ok. Sometimes however, I had to increase the dose massively again just to get the symptoms under control, then start all over again with the reduction...which is very frustrating. All of this, I might add, was done under the direction of my neuro in partnership with myself i.e. being very honest with him about how I was feeling, even if I wanted to say I was fine just to get off the roids!

To be honest though, 10mgs of steroids really isn't very much and can be a maintenance dose for a long long time without too many ill effects. For me, at one point, if I'd managed to get down to 10mgs and no lower, I would have been really happy (I think my highest dose was 80mgs one day, 40 the next). Luckily I have managed to get off them altogether, but as I said, this has taken a long time and other medications have been introduced. Now I'm going to start reducing the amount of cyclosporine.

So, my advice would be to take it slowly and remember that any dose under 10mgs isn't a lot and is much less harmful than higher doses. Also, one thing my neuro said to me a long time ago, was that I may have to live with a certain level of symptoms and deciding what level I could live with was up to me...this may have just been a slight lisp-y feeling or not being able to close my eyes fully, obviously not being able to talk or eat was not an option. Luckily I currently do not display any symptoms at all, but I know they could come back any time when reducing meds.

I know it's really hard to be patient but unfortunately with MG it's something you have to learn,

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Levitas

I was started on very high dose steroids 80mg daily together with Mestinon 4x60mg daily before thymectomy, after the op I was also started on Azathiaprine 75mg daily.

I started the steroid reduction at a rate of 10mg monthly and as I reduced further it was at a rate of 1mg monthly and alternate day steroids until I eventually got off the steroids in July2007. During this time the Azathiaprine was increased to 150mg daily and I still take this dose together with the Mestinon which is now 3.1/2 x 60mg daily. I have been asymptomatic of the MG for over 2.1/2 years, but I am never complacent where it is concerned, it is always going to be there even if it is being a bit shy of showing it's face at the moment.

All my meds I take with the instructions and fulll knowledge of my neurologist, I take his advice, and it works for me, I would not attempt to alter my medication myself. If I should ever need to take steroids again I would be happy to do so, I think that the lower doses can be taken safely without too many disadvantages, our bodies make around 7mg steroid daily on their own, so your daughters dose of 10mg really is very small and a sensible dose.

In all of this I think that patience is essential, it is no good taking two steps forward and one step back, it all takes time. The lower the dose of steroids then the slower you need to go and there is no guarante that anyone will be steroid free,

Once again I repeat myself by saying that this in only my experience of the steroid reduction and finally coming off them, and we are all different in our responses to the meds.

One thing I would make clear though is to work together with the neurologist where the meds are concerned.
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South Wales
UK

My highest dose was 30mg alternate days, reduced by 5mg per month when stable to 15mg, at which point minor sympotms popped up, so we stopped at 15mg alternate days and added in Azathioprine, 150mg daily, which I continue to take.

After 6 months or so on the Aza, I began reducing my steroids by 1mg per month. I got to 9 a few months ago and decided not to push my luck and stayed there for 2 months. I reduced down to 8mg a few weeks ago and noticed a very minor return of symptoms over the past week or so. I have started taking mestinon again (only as an when needed - with the full consent of my drs), at about 30mg a day. Hardly anything really!

I expect I will stick at 8mg alternate days for a while now and see if the symptoms go away again, then think about continuing with the 1mg reduction regime.

I know I haven't come of completely so this maybe isn;t the information you wanted, but everyone is so different, there really is no easy way to compare different people's experiences.

Is your daughter taking another form of immune suppression to replace the steroids?

Re: stopping mestinon first. There was some discussion of this at the Oxford gathering. There seemed to be a couple of pros to being off mestinon before reducing the steroids -- first you know the steroids are controlling the problem and second you'll spot quicker if the reduction is bringing back symptoms.

Anyway, as levitas says, one change at a time is a good way to go.

Thanks again for the stories.