Dermatomyotisis Treatment Options

[Littlegem22]

Hi there. I am new on here. I am am a 36 year old female.I was diagnosed with dermatomyositis about 10 years ago but my CK levels were not super high and they said it was dormant and suggested we dont treat for now. My main symptoms are rash on neck and scalp and knuckles and elbows and difficulty with stairs and getting up from chairs. I am generally healthy and swim twice a week. I had a stressful time and last few months have noticed since my muscles are worse and also hurting in this cold damp weather so at my last app I brought this up. They took a blood test and want to do an MRI. I think it has become active. Haven't heard back as yet from my rheumatologist but treatment by steroids has been brought up and I think maybe its time to get treated. Have you found steroids have improved your muscle weakness? Also I am really worried about side effects so wondered if people have been affected much by then. I work full time and have an active social life so just hoping it won't affect me too much. I also think I might like to have children in next couple of years and wonder how my condition may affect this? Looking forward to hearing from fellow sufferers! Gemma

[Jo-Goode Administrator]

Hi Gemma,

Prednisolone can be very helpful in the short term to stabilise your symptoms giving the time that's needed for an immune suppressant of 3 to 6 months to take over the management of your condition long term.

Some immune suppressants cannot be used with pregnancy, so make them aware of your intention and you may also need to be monitored more closely during pregnancy because auto immune conditions can cause complications. There has been several conversations about pregnancy on the Myositis Forum UK facebook page that you may find helpful to read. facebook.com/groups/2432609...

[Littlegem22 in reply to Jo-Goode]

Thanks for replying back to me Jo. I have been called for an MRI scan so maybe I will go onto some meds when they have that back. I am just worried about side effects which is why I avoided treatment before and just put up with it but now my joints are a lot worse. Have you been on Prednisolone and what side effects did you have?

[hopegalore20 in reply to Littlegem22]

Hello Gemma, how are you doing now? I was diagnosed with this condition over four and half years ago. It s been very active during this time and remains so. I have tried various medications, but still waiting for that medical drug to send it into remission and let me restart my life again. Although Steroid treatment did help with my condition in the beginning, the side effects are now overruling, and my bones are thinning. On Mycophenolate Mofetil along with a combination of other meds. Tried IVIG, Methotrexate. Also receiving Truxima Infusions. Hoping one day that my immune system will kick start itself and begin working as it should instead of attacking me. Hope keeps us all going. X

[Thighpain70]

Hi Gemma

Ive only just joined and saw this post you made although i can see it was long ago i hope you are still on this forum.

I have the same symptoms as you had but am awaiting a ck test to cobfirm. My pain is just in my quads, i can walk ok but get up from a chair is hard as i get jnee pain. I get the rash on my forarms and have dry elbows and dry knuckles.

I am hoping they say that i am doormant too. My esr and crp i believe were ok.

If my ck comes back low will it mean my dermatomyositis may also be doormant?

I just wonderd how they know its doomant?

Thanks

[hopegalore20]

Hello Gemma, just wondering how you are doing now, coping OK?

I was diagnosed with this condition over four and half years ago. It s been very active during this time and remains so. I have tried various medications, but still waiting for that medical drug to send it into remission and let me restart my life again. Although Steroid treatment did help with my condition in the beginning, the side effects are now overruling, and my bones are thinning. On Mycophenolate Mofetil along with a combination of other meds. Tried IVIG, Methotrexate. Also receiving Truxima Infusions. Hoping one day that my immune system will kick start itself and begin working as it should instead of attacking me. Hope keeps us all going. X