Dermatomyositis anyone?

I've seen my rheumatologist recently and mentioned that I've been having some face swelling that doesn't seem to go away. I also showed him pics of redness on my knuckles and asked him whether it can be dermatomyositis (DM). He agreed that it can be but secondary to lupus, the way he said it was 'overlapping symptoms'.

I've recently changed my immunosuppressant because the previous one (mycophenolate) wasn't controlling joint and muscle pain. I'm now on ciclosporine, already in the 4th week but at quite low dose.

The face swelling hasn't gone away, actually it has been increasing in the past few days. The rheumatologist has put me back on steroids to target it.

As far as I can read about dermatomyositis, it seems that it causes cancer in the vast majority of sufferers. It seems that once a person is diagnosed with DM a protocol of routine monitoring for cancer is instituted.

If you have been diagnosed with DM, my questions are:

- are you on a routine monitoring for cancer?

- if so, what does that monitoring entail - CT scans, blood tests for example? And if so, how often are you having these done?

- what medication are you on for DM?

Many thanks.

4 Replies

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  • Purpletop I'm really sorry to learn you have this to contend with now on top of your Lupus and a new drug. Did this face swelling start at the same time as you started the Ciclosporine I wonder? I ask because my face has periodic swelling and this was a permanent state of affairs the second time I took Hydroxichloraquine - along with hives and Rosacea and it took ages for me to make the connection.

    I don't know much about DM but I did a lot of research when my face was swelling up a lot so I do know you are right about the cancer connection. I would imagine this has to be diagnosed by a dermatologist rather than a rheumatologist? Could you be panicking prematurely perhaps or is this wishful thinking on my part - perhaps I have missed other posts? I hope others with experience will come on and offer you more help - all I can offer is sympathy. Twitchy

  • Thank you, Twitch. The swelling started back in June this year, firstly in the periorbital area, then down to my lip, then back to my eyes. So it wasn't triggered by Ciclo. At that time I thought that it is due to perhaps kidneys, or just water retention. When it got to the lip i saw a doctor who said it is allergy. It diminished with steroids but didn't clear fully.

    In any event, that wasn't the main symptom on which the rheumatologist diagnosed overlapping DM symptoms - I have redness on my knuckles sometimes and those Gotteon papules too sometimes. Plus other stuff.

    I am due to have a skin biopsy next month but that won't really help because inflammation due to DM and that caused by lupus appears the same in a skin biopsy. It is a combination of things to diagnose it and a rheumatologist is the main specialist for that, not a dermatologist.

    But as I said, my rheumatologist isn't unduly concerned because my myosotis antibodies were negative in April and he saw many of his lupus patients having the overlapping symptoms and deal with them as with the lupus.

    Nevertheless, I'd like to know whether I should be vigilant - if cancer hits, then that's a different ball game.

  • My first diagnosis 10 years ago was DM (since morphed into SLE) but I was never aware of any link to cancer for it specifically. As far as I know many of not all autoimmune diseases are implicated with higher cancer risk. If you think about it that makes sense; autoimmune disorders are mediated by white cells (too many, too few, overactive etc.) and so is cancer. Also, some of the treatments we would be on are immunosuppressive (same as chemotherapy) and indeed drugs such as methotrexate and Rituximab are used to treat cancer (the latter is in fact only off label for SLE, in the main it is used in lymphoma and leukemia). I don't have prescribed screenings done or scans or anything but I do self check for lumps and I go for smear tests once a year, but so does my mum who's completely healthy. I think just normal vigilance will be fine, there's no point in obsessing. I think is certainly increases our chances of getting cancer but I would say that it's not a foregone conclusion and certainly not in the majoritu of DM sufferers. 1 in 5 people get cancer anyway, regardless of autoimmune status and the majority are quite treatable so please don't let it freak you out. Just be vigilant and take care of yourself.

    My actual diagnosis is SLE with active DM but the treatment hasn't really changed from when it was just DM; steroids, methotrexate, calcium and folic acid have always been there but since the SLE diagnosis mercaptopurine and IVIg have been added. The redness on your hands is called erythema (if you're looking for a search term) and it's a hallmark of DM according to my rheumy (and my other before her). Not that that's really relevant, I just wanted to share that I get it too and it's a sign I'm flaring or that I have an infection of some kind.

    I hope you feel tonnes better soon x

  • Thank you for responding. I think most of lupus sufferers have overlapping DM symptoms, the knuckle redness, difficulty swallowing, difficulty filling lungs with air, heart palpitations, all hallmarks of DM. But as you said, as the treatment is similar, it is all a big bucket of autoimmunity.

    However, about the cancer - unfortunately DM has a separate link to cancer than lupus and it increases the cancer risk dramatically. You'll see research papers documenting trials done on DM sufferers to quantify that risk which is pretty high. The theory seems to be that the specific antibodies created by the immune system to attack a cancer cell in its normal duty of eradicating abnormal cell production, are similar to those antibodies used in an attack against own muscle cells/capillaries in the skin/muscle, with the result that when the immune system goes against the muscles etc in a DM sufferer, it leaves cancer cells unchecked, which in turn proliferate much faster than in any other cases.

    This fact is recognised by rheumatologists which is the reason for cancer monitoring. My rheumatologist confirmed that he has patients that he monitors yearly with a full body CT scan and that these scans do detect tumours as they appear. It's just that he didn't think I should have that at this point, given that my myositis antibodies are negative.

    I'm a preventative steps kind of person, I want to know what I need to do in the long term, it helps me cope with day to day. Which is why I was wondering whether others are going through similar screening.

    So it is good to hear that you've been through a diagnosis like this one and haven't been put on special screening. I'll try and obsess less...

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