Pred reduction being replaced by azathioprine

[Zimian]

Is this the correct forum to be asking if anybody has experience of Myasthenia Gravis, predisolone reduction and starting azathioprine?

[PMRpro Ambassador]

Myasthenia gravis - no. This is for polymyalgia rheumatica (PMR) and giant cell arteritis (GCA).

Reducing prednisolone - yes, in the context of PMR and GCA but it isn't that different elsewhere - slowly and smallish steps leaves you less likely to suffer steroid withdrawal. It also tends to reduce the likelihood of flares of whatever illness you are using pred for , providing that the pred works for that illness to reduce symptoms. We will try to answer any more specific questions you would like to ask.

There will be a few people on azathioprine but it isn't used a lot for PMR/GCA, only as a steroid sparer in the hope you can get away with a lower dose of pred and does little for our symptoms on its own.

The rheumatoid arthritis forum will have plenty of people on azathioprine. The myasthenia gravis community is here:

healthunlocked.com/mga

[Zimian in reply to PMRpro]

I thank you very much for taking the time to reply.

[Hidden]

I have MG and take azathroprine for the last 12 years I have also developed Pmrgca 18 months ago and went back on steroids.

[Estival]

Hello Zimian

The HealthUnlocked Myasthenia forum does not have a following anything like this nicely hyper-active PMR site.

(No posts for more than a year)

This is obviously due to the fact that MG is a far rarer condition - and I guess, many MG sufferers just do not have the energy to sit and type ....

My wife has PMR and so I have become interested in this forum. I was diagnosed with MG some twenty years ago, had a thymectomy, a pretty serious relapse and a crisis and was on pred for 16 years.

PMR sufferers and their medical advisors, (I hope they will forgive me), see the reduction of their pred dose as a daily goal. Neurologists probably take a different view. A high dose of pred and azathioprine is normal in UK (are you in the USA?) when MG is first diagnosed. Getting off azathioprine should I think be the challenge, then slowly reducing the steroids. Very slowly - over several years. If you get symptoms coming back - any double vision, facial muscle weakness etc then you have to go back to 10 - 15mg and start the reduction process again - taking maybe a couple of years to get down to 2 or 3 mg.

I have been very fortunate to be under the same neurologist for 20 years. He is probably the top MG guy in the UK and does not get too worried about a dose of 10mg. 5mg is less, he would say, but it is better to be without MG symptoms.

2mg was my daily intake, as a kind of crutch, for several years. The symptoms will never disappear completely I don't think.

I would proffer the advice given to me - don't become obsessed with your symptoms, take a dose that keeps you pretty active and reduce slowly, being prepared to go back to no less than 10mg if you flare up.

We should feel grateful that we don't suffer pain like the guys with PMR.

Good luck.

[Zimian in reply to Estival]

Hello Estival,

Many thanks for your reply. I am in Scotland, getting very breathless walking up hill or stairs is my main problem.

[Estival in reply to Zimian]

Ah, Scotland... in which case may I suggest Zimian that you treat yourself to a day or two in London. Your GP can refer you to the National Hospital for Neurology and Neurosurgery in Queens Square to see Robin Howard. He has a weekly MG clinic. Honestly, you would not regret the visit.