New to this terrible disease, Dermatomyositis.

Hi Gary,

I have similar issues as a result of my autoimmunity which is IgG4 syndrome, some think you probably won't have heard of but groups together and autoimmune ‘pick and mix’ of retroperitoneal fibrosis, aortitis, pericarditis and chronic kidney disease.  In addition to the skin irritation which drives me mad particularly at night, I have developed literally hundreds of small warts and some larger ones in the folds of my skin, particularly the folds of the skin, lower down where you prefer people not to be messing around with a laser to remove them!  The prednisolone kicks in fairly quickly, I had mine by IV for the for the 1st week, which got me off to a head start.  Maybe you could suggest this to your clinician?  There is a good cream which is subscription only called Aldara it's is commonly used for genital warts, but I had it prescribed for my fingers, toes and my other ‘sensitive tissues’ it has been very successful.  I've also used an emolliant called Cetraben, which is a soap replacement, you slap it on all over before you go to bed and shower it off in the morning, it really cools your skin down and relieves the itching.

I hope this helps.

Steve

Hi Gary,  I'm sorry to hear your story.  I was put on steroids for a different skin disorder but a smaller dose.  The dose was too small but, the thing that it did do, almost immediately, was to get rid of the itch.  I am now on Methotrexate.

Have you been back to your Consultant?  I think you should telephone his secretary and tell her what you have written and you should be given an appointment immediately

I have heard of your disease but know nothing about it, so have just been reading the leaflet on this site  

https://patient.info/doctor/myositis-polymyositis-and-dermatomyositis

It does mention that things should improve after the first month or so with the appropriate treatment but even after reading that,  I think you should telephone the Consultant's secretary now!

Good luck Gary.

 

Hi Gary and Mrs Mop,

I forgot to say in my earlier comment about the effects of steroids on your appetite, this sort of dose will make you absolutely ravenous and as a result undoubtedly you will bulk up.  You also become susceptible to cushions disease,  when your face puffs up and you look like a hamster.  Mrs Mops methotrexate, which I have tried is more powerful than traditional steroids and is regarded as a steroid replacement, it is part of the DMARD group of drugs but as it is cytotoxic it can have similar effects to chemotherapy. There are others such as azathioprine and cyclophospahmide.  From my experience if you are happy to inject yourself I found methotrexate to be a good replacement, the side-effects were minimal and I was able to lose the weight, which I gained on prednisolone.  This is probably something to consider if you will need to be a long-term user.

Steve

Because the muscles in the body are involved in these diseases, I wonder if the shortness of breath is from a current flare-up of the diaphragm muscles?

This is Gary's wife and I just wanted to let everyone know that he passed away on January 30 are 28 days of sheer misery caused by this dreadful disease. The very earliest symptoms started about 10 months earlier with a progressive shortness of breath and fatigue. The breathing problem was chalked up to smoking which he tried to give up and had been successful at for his last 30 days. The quick downward spiral began on Jan 2 when the itching began. Within a few days the rash had a good toehold and by the beginning of week 3 the rash was raging and the muscle weakness was intense. CPK levels went from 186 on day 6 to 19304 on day10. After 2 weeks on 40 mg of Prednisone the CPK levels had fallen to 9262, headed in the right direction but still grossly elevated. Gary was miserable from the uncontrollable itching and his skin was so tender he could not stand to be touched, yet I kept him rubbed down with coconut oil which did provide some relief from the dry, tearing of the skin. It is suspected that he had an underlying heart condition that complicated matters, but had not been diagnosed yet. My heart goes out to all of you that are battling this awful disease, Dermatomyositis. Please push your doctors to be vigilant in treating you and do your own research and pass it along to the doctors because they have limited knowledge of most autoimmune diseases and are basically fighting it with trial and error. God bless.

Emis Moderator comment: I have replaced the link to Gary's profile with a message posted in another discussion by Gary's wife.