[kezza]

Just when things cannot get worse apart from the normal lupus stuff,pain, ankle injections of steriods now I have Myositis that is dermatomyositis. A overlap with lupus which causes muscle dengeneration. In bad cases death I do not know what is happening i just know i now have had enough and do not quite know how to cope these days. It is just a shock to the system anyway it is treated with steriods and imuran which i take for the lupus. so cannot do anymore except protect against the sun etc etc it is another form of autoimmune disorder so just another diagnosis for the book. Has anyone there got the same thing? Sorry this is negative I am in awful pain tonight and feeling a bit low
thanks for reading
Kezza

 

[Clare.T]

Oh ((( Kezza ))) what a bummer. So you have the facial rash too as well as the muscle weakness ?
I read that Cellcept and help and IVIg can help in the short term if that is available in AUS. It isn't used much elsehwere as it's very expensive.
I think physical therapy can be important too.
I see that you stopped taking Plaquenil when you started methotrexate. Plaquenil might help more with the skin - it seems that in DM it's common for the skin not to respond to the same therapy. However the emedicine article I read said that Plaquenil causes skin eruptions in 20% of DM patients.
There's one person here I know of who probably has a mysositis overlap with lupus

I hope your doctors will take the best care of you and it will never worsen. Feel better soon.

Many hugs

Clare

 

[Katharine]

Hi Kezza,

My Mum has that exact same combo as you - dermato and lupus. It's not at all fun and the dermato can be very debilitating. She was unlucky to go a very long time before diagnosis and was barely able to move when they found out what was wrong.

Happily it is treated in much the same way as lupus and although Mum has her bad days she has managed to live with it very well and is a very fit looking almost 70 year old.

The rheumy suspects that I also have a myositis overlap (without the derm bit) but as my bloods never show much we would need a muscle biopsy to confirm and there's not much point, seeing as it's treated in the same way as lupus and the rheumy is aware of it and listens if I say things are not too hot.

hugs to you :hug: I remember her devastation (I was eleven). Luckily today we are armed with a whole load more information and a whole lot of support right here

Katharine

 

[kezza]

Thanks for your responses,
I was on plaquenil but it really mucked up my stomach so bad it gave me irritable bowel so then i went on methetrexate. that did not do too much except bring on mouth ulcers and nose ulcers so my rhuemy put me on Imuran I am also on pred now at 20mg tapering down from 30mg then when i get to 7.5mg i must stay on that for life. I am contacting for a referall to a physio at the hospital if i get that referall i do not have to pay for the visits. I also have a 2.4cm gallstone where my rhuemy is refering me onto a surgeon he said although it not botherig me now it will later and with the lupus and dm i prob better off having that removed the gallbladder that is. i also have private health insurance in a private hospital so will see a surgeon in feb thanks for your replies it is nice to know i am not alone ta
kerry
:wink2: