[anna from nottingham]

Hi all
hope everyone is ok today

I just have a question about myositis if anyone can help it would be much appreciated

I have SLE/MCTD overlap, which includes myositis

i am currently not on any medication (apart from about 2 weeks of prednisolone about a month ago) for my lupus (methotrexate 25mg was stopped at the beginning of december 07 due to problems with white blood cells)

my joint pain is still under pretty good control- however, i have been finding that i am feeling more tired than usual, particularly walking up hills/ stairs etc. and my muscles are starting to feel weaker

i was just wondering if its possible to have a 'flare up' of the myositis without a flare up of the joint pain?

and also- if anyone knows what would be a good medication for the myositis? as i would rather not go back on methotrexate if possible

any help is much appreciated!
take care
annaxxx

 

[Lily]

Hi anna,

I'm sorry you are having so much trouble with the myositis :hug:

I remember you and your Rheumy thought you might have had a reaction to the Plaquenil when you started it a while ago and you had to go off it. I wonder if it's worth trying to slowly introduce that again, it could certainly help this problem. If that's not possible then you have some other options as far as the myositis goes, Imuran (Azathioprine) is probably the next one to try and it may not give you the problems that Metho did. It does need to be monitored though just like Metho to make sure it's not affecting your liver or blood count. Many people find it very effective, I know I have.

http://www.myositis.org/template/page.cfm?id=304

love
Lily

 

[Katharine]

Hello Anna,

My rheumy believes I have the same overlap as you. I don't know if it is possible to have a flare up of one without the other. It probably is, after all, people have problems with their fibro playing up more than their lupus. I really don't know.
I tend to have both at the same time. The rheumy has said that the meds are the same as for lupus and that controlling both is what they are aiming at. For certain people it is necessary to use prednisolone more longterm to help with mysositis problems.

Another very important thing in myositis is keeping muscles as active as you can. That doesn't mean going mad with exercise - that could be very detrimental - but doing physio and guided gentle exercise to maintain muscle tone as much as possible.

My lupus is much more controlled now due to meds but I am still having pretty big problems with my muscles. I think that it is mainly a question of it taking a bit longer (I have only been feeling relatively good for a little over a month) and of course being able to build up very slowly on exercise.

I am on plaquenil, imuran and prednisolone (tapering down now at 7.5mg with a view to getting off it).

Sorry I can't be of more help but as I said the rheumy says treatment is the same except for the extra physio/exercise.
My Mum has had dermatomyositis (and apparently lupus) for the last 30 years but has never had any treatment other than prednisolone so is not a very good reference. She has never had very good follow up from docs and it is only now that she has a new doc and he is horrified that she was never given other medication such as plaquenil or possibly immunosuppressants instead of so much prednisolone.

Katharine

 

[anna from nottingham]

Thanks Lily and Katherine for your advice, which is much appreciated.

I will ask the rheumatologist next week about the possibility of starting plaquenil on a lower dose.- i've tried imuran before but had to stop that too because of problems with low wbc (though looking back this may have been a bit of a premature decision by the rhematologist as it seems that low wbc are just a part of my illness rather than a medication side effect)

thanks for suggestions too about exercise- i try to do as much as possible but at the moment i really don't seem to be able to get much in other than walking to and from uni (approx 30 mins a day) as im working very long hours trying to submit my phd!- once i submit, doing more exercise will definately be my main priority!

i hope your muscles feel better soon katherine!

take care annaxxx

 

[Katharine]

Hi again Anna,

Walking 30 minutes a day is already pretty good well done!

Even if you don't have time right now you could always ask your rheumy about whether physio could help the muscles. The only thing is it must be done by someone who knows what they are doing. I know that Mum suffered terribly from physio's who didn't know what connective tissue diseases are trying to get her to "workout" too much.

Katharine

 

[raggedyann1]

Anna,

My understanding from past reading on Myositis is that Cortisteroids like Prednisolone are the preferred treatement and if it is severe then high doses are sometimes used. I also remember that aggressive exercise is not recommended until the lab tests return to normal. Gentle stretching and other "exercise" of that type is what is usually used when the inflammation is present. Can your GP refer you to a physiotherapist (i think that is the name used in the UK)?

Take care,
Karen