Dermatomyositis

Hi Paula, Short term prednisone never works. Prednisone works when it is used to bring down symptoms and kept going while another drug is used to control the disease. Control comes from use over weeks and sometimes a couple - few months but the drugs never work immediately. Once control is gained, then tapering off steroids is ok. Plaquenil didn't work for me because is has an anti-imflamatory built in that I'm allergic to. Most people I know, including me, had to try several different drugs to find the one that works for them. There is Immuran, Celcept and Methotrexate that are also used for this set of diseases. I have to use Rituxan, IV infusion, because the other drugs did not work for me but I know many who they do work for. I spent 2 yrs trying all the other drugs and while I did, I was on a minimum of 20 mg of Prednisone at the same time. Only after the first set of Rituxan infusions was I able to get off prednisone, completely. I hope this info helps. Keep complaining and find the best doctor you can who works with this disease. Rheumatologists tend to be the best specialty because the myositises are cousin to rhuematoid arthritis and Lupis and these diseases are treated by the same drugs by Rhuematologists.

I found this from the NIH on the relationship of cancer and myositises and I hope it answers your question on the cancer relationship. The Dermatomyositis I fight, was triggered by breast cancer. BC chemo knocked it out temporarily and then less than a year later it came back with a vengeance. In fact, my first flair was thought to be a drug reaction because I tend to be very sensitive to many drugs. It wasn't until 7 months into the second flair that I got a correct diagnoses. Then I spent 2 yrs trying various drugs as mentioned above. Then 2 more yrs on just prednisone waiting for Rituxan to become an approved treatment. That was a very long wait.

Loret

"Abstract

BACKGROUND:

Dermatomyositis and polymyositis are associated with cancer, but previous nationwide studies have not had sufficient cases to test the association between myositis and specific cancer types. Our aim was to investigate the risk of specific cancer types in individuals with dermatomyositis and polymyositis.

METHODS:

We did a pooled analysis of published national data from Sweden, Denmark, and Finland. All patients with dermatomyositis and polymyositis (> or =15 years old) were identified by discharge diagnosis from the Swedish National Board of Health (1964-83), Danish Hospital Discharge Registry (1977-89), and Finnish National Board of Health (1969-85). Personal details were matched to national cancer registries, to identify all cases of cancer up to 1987 in Sweden, 1995 in Denmark, and 1997 in Finland, and to national death registries for the same periods. We calculated standardised incidence ratios (SIR) for individual cancer sites for dermatomyositis and polymyositis separately, using national cancer rates by country, sex, age, and date.

FINDINGS:

We identified 618 cases of dermatomyositis, of whom 198 had cancer. 115 of the 198 developed cancer after diagnosis of dermatomyositis. This disease was strongly associated with malignant disease (SIR 3.0, 95% CI 2.5-3.6), particularly ovarian (10.5, 6.1-18.1), lung (5.9, 3.7-9.2), pancreatic (3.8, 1.6-9.0), stomach (3.5, 1.7-7.3), and colorectal (2.5, 1.4-4.4) cancers, and non-Hodgkin lymphoma (3.6, 1.2-11.1). 137 of the 914 cases of polymyositis had cancer, which developed after diagnosis of polymyositis in 95. Polymyositis was associated with a raised risk of non-Hodgkin lymphoma (3.7, 1.7-8.2), and lung (2.8, 1.8-4.4) and bladder cancers (2.4, 1.3-4.7). In both dermatomyositis and polymyositis, risk of malignant disease was highest at time of myositis diagnosis.

INTERPRETATION:

Our results provide evidence that dermatomyositis is strongly associated with a wide range of cancers. The overall risk of malignant disease is also modestly increased among patients with polymyositis, with an excess for some cancers."

I had also been DX with dermatomyositis 10 years ago, With meds have been doing fine except my scalp

itching, thinning hair anyone else having this problem if so what is helping you if anything.

Hi shawn96763,

I also have itchy scalp along with itchy skin. I take antihistamines every day. It does not stop it altogether but it helps me. My hair does come out a lot and is a lot thinner than it used to be but it doesn't come out as much as it used to. I have tried different shampoos but this does not help me either.

I have thinning hair and have tried Nioxin shampoo system for that last 4 weeks so far I think it has helped but not sure....

Hi Paula, I am in process of being diagnosed, but it looks likely that I have it as have all the symptoms of dermatomyositis. So far I have the rash on hands (not itchy), very sore cuticles with prominent nail fold capillaries, I also had the calcinosis - which is better since a week of steriods (these were percribed before they realised what it was). I am now awaiting results, which I have been told can take some time and won't see the specialist till end of June.

My head at the moment is really itchy, which I had before, but it seemed to go away. I hope I don't start loosing my hair and feel sorry for those that have.

You mentioned that you haven't had the muscle problems - so far I haven't, although every twinge I think its happening. How long have you had the rash with no muscle problems?

I sometimes feel shattered, but I work and have 2 little girls so I guess that could be due to that! I am 39.

I have read that following the Paleo Diet can be a great help - has anyone tried? I've been doing it for the past 10 days and feel a bit brighter and think the rash looks a little better - but guess early days! Althought the itchy head is worst!

Hi Kat!

I develop the rash on my face and hands and had an itchy scalp about 10 months ago when I was working hard doing some renovation. I was told it is possible to never get the muscle issues..

I too always think maybe every little ache might be associated but a specialist tested my muscle strength (just by pushing against him with arms out the side and leg strength lying down) and said I had no sign of weakness?

I have had a CT scan, mammogram, chest x-ray, abdominal ultrasound, smear test.. all so far are clear but you always wonder if something is hiding as it seems 30% of this is caused by cancer : ( Fingers crossed!!

I am tired a lot but also have 3 kids..

I might look into the Paleo diet.. its good to be proactive.

Paula

Thanks Paula for reply - fingers crossed for us all re the cancer risk. I've tried to put it out of my head just whilst we get the first set of results, but its still such a massive worry. I have a smear in a few weeks time and I hope to get first set of blood results in next week or so to determine if it is DM (which I think it defo is).

I did read that Calcium Ascorbate can help with the itchiness - worth a try I guess!!

I'll let you know how this Paleo Diet goes - I do think hands look bit better, especially the cuticles. Although its not helping my dodgy tummy, so that's the down side.

kat, I have good news, so far they have found no sinister cancer anywhere in me (a small dot in my liver which is apparently pretty normal but they will follow it up just incase..) I've had a smear, mammogram, chest xray and ultrasound and then a CT scan.

I am now trying the Paleo Diet too but mainly for Irritable bowl. My specialist is pretty sure it won't help with an auto immune condition like this..

I will look at the Calcium Ascorbate.. .hehe.. between us we may find a cure!

Ps - I also was told they were pretty sure it was DM before they said it definitely was based on blood tests and a skin biopsy..