Anyone get calcinosis?

[Chancery]

I'm still VERY far from getting a diagnosis (thank you, NHS) and I'd have given up long since if it wasn't for my near-constant facial (and nipple) rashes and the calcinosis I have. Mine's is very mild, I only get one, or perhaps two, small 'pearls' on my hands and they can be very far apart, time-wise. I had NO idea that they were a thing, and I thought everyone got them. I assumed, in fact, that were cholesterol 'bumps' like people get round their eyes.

I've been getting them on my knuckles and along the edges of my fingers since at least my 40s - that's when I first remember noticing them. I only discovered what they were a few weeks ago when I discovered Dermatomyositis. It was the fact that they are rare that made me stick to my guns that this might be Dermatomyositis - that and the rashes, as I said.

It's one of the problems with being older (63) that aches and pains make you uncertain as to what is normal, and maybe it's normal for me not to be able to climb hills and steps without panting like a heavily overweight walrus, or to have problems getting into my leggings and up a two-step stepladder, but I KNOW it's not normal, and nothing to do with age, to have rashes round my eyes and now, also, that the calcinosis is not something everybody gets.

Annoyingly, I had one on the side of my finger in September/November and finally, curious as to what it was, removed it with a needle to discover it was hard, not fatty, and had a chalky liquid in it, then I discovered calcinosis. Damn! I'd destroyed evidence! God knows when I'll next have another one.

Like I say, I only ever get one at a time, mostly, and they are just teeny, hang about for a couple of months then disappear on their own. I'd be curious to hear from anyone else who has them and if rheumatologists are likely to give any weight to them as regards a positive diagnosis.

[MissusTee]

I have scleroderma, and ATM have a massive, very infected calcinosis on my wrist which is very painful. I'm on antibiotics but it's not working. Seeing plastics next week but I don't know how I'm even going to let them touch it as it's so sore.

[Chancery in reply to MissusTee]

That sounds awful, Missus. I've never noticed mine being painful, but they are so small, just fat pinheads really, that I don't suppose they're irritant enough to hurt. Yours is like someone inserted a golf ball into your skin so it is going to hurt. Hopefully Plastics will be able to help you, and remember they're not going to touch it without anaesthetising it - just tell them so!

[PinkLadyNo1 in reply to MissusTee]

I had two wounds (in excess of 4 months) which were ulcerated, very painful and looked like calcinosis and were not responding to various steroid treatments. I had a skin biopsy which came back with a negative calcinosis result so that confused the issue. However my dermatology nurse is very proactive and knows not to get too wound up about lab results. She prescribed Flamazine (a burns ointment) and less than 2 weeks later the wounds are almost gone, yey! 🤗. (BTW: dx = Dermatomyositis)

[Cheryllovescake]

hi Chancery I was diagnosed 8 years ago with Dermatomyositis after many tests. I have been getting white lumps on parts of my fingers for a few years now,sometimes they hurt.I mentioned this to a GP but he didn't seem to think it was much of a problem.I Too have problems with steps and can't even get into a car on the driver's side as I can't lift my left leg high enough.Small inclines even cause me problems and make my knees,ankles and thighs hurt.The things you are experiencing seem to be quite similarto me.Have you seen a Rheumatologist or Neurologist?Hope you find out what's wrong soon and manage to get some treatment

[Chancery in reply to Cheryllovescake]

Hi Cheryl (sadly, I too love cake!). No, I haven't seen anybody. I was given a referral to a rheumatologist in September and I got a letter saying , effectively, I was on the waiting list for the waiting list. Currently, here in Scotland, it's a six month wait, so I won't be likely to see anyone till March, I estimate. By then I may be on a Zimmer frame, or have coughed up a lung. I tried to see a doctor about my symptoms and connections to Dermatomyositis, hopeful to get a referral to the Scottish specialist, but she cancelled the appointment on me since she "couldn't refer me as it is a different health authority". I've never actually sat down and talked to a doctor about it, which seems unbelievable but is true. They hear autoimmune, refer you and that's it done. BUT she did give me more comprehensive blood tests and my ferritin is virtually going up daily plus I have elevated LDH- architect. I had no idea what that is and had to look it up, but basically it means cell death, i.e. your organs are being damaged, and one of the things that can cause it is muscle dystrophy, so that COULD be connected.

Anyhow, the doc who saw the tests (a different one) has pulled me in to talk to me. Whether she has a theory or whether she will want to do more tests, I don't know, but I keep being an optimist and hoping this will make them take it more seriously. I don't know if they can ask for you to be seen more urgently or not, but I can always ask.

One of my biggest concerns is the increased risk of cancer myositis sufferers have and some of the rash is on my nipple, so I do have concerns that I have lurking breast cancer, and the idea of waiting ill March before anyone even thinks about investigating that does NOT cheer me.

[Chancery in reply to Cheryllovescake]

Forgot to say, Cheryl, my biggest leg problem is also my left leg and it actually took me a while to notice that I was a bit anxious about stepping up onto buses sometimes, and when I examined why I felt like that, I realised it was kind of painful and difficult to do. I have a terrible job getting my leggings onto that leg and have to do a sort of ridiculous bend-down-step-into-haul-up thing, wobbling about from leg to leg. But what doctor takes 'I can't get into my leggings' seriously? They just think you ae fat/old/lazy/fussing about nothing - delete as appropriate.

[Cheryllovescake in reply to Chancery]

Sometimes it's hard to explain things properly to specialists and GPs because they don't really understand how much pain a person is in and how something as simple as a step up or reaching up to a cupboard for something or even trying to reach something on your weaker side can cause pain in varying degrees. I usually sit down when I'm putting clothes on even though it does hurt to bend down but at least I can't fall over if I'm already sitting down.I'm sorry you're having such a hard time right now,do you have family?

[Chancery in reply to Cheryllovescake]

Nope, no family, no friends, no significant other. I sound just like Orphan Annie! But unfortunately true. I split up with my long term partner after 45 years and it hit me even harder than I expected. I wouldn't be at all surprised if it's what started all this! Certainly being on your ownsome makes stress and anxiety much worse.

[Maggie7171 in reply to Chancery]

Hang in...

[Chancery in reply to Maggie7171]

Yep, by my fingernails!

[Maggie7171 in reply to Chancery]

Good to keep your sense of humor 😉

[Chancery in reply to Maggie7171]

Essential!

[PinkLadyNo1]

It seems, I too have calcinosis. I was dx with Dermatomyositis in Aug 2020. In last couple of months, I have developed several significant areas that are looking like being Calcinosis. I finally got one biopsied last Tuesday, waiting for results.

I, too am very fearful of a lurking breast cancer. The biopsy was originally planned for my right breast but unfortunately the wound is so badly ulcerated that they feared it wouldn’t heal if the biopsy was taken from there. I have also been declined a mammogram due to the ulceration and have to keep everything crossed that it heals sufficiently to be mammogrammed in December instead.

I would be really grateful if anyone can suggest anything that helps to reduce or manage these areas as I’m finding them extremely painful and my movement is becoming more restricted each day.

TIA

[Chancery in reply to PinkLadyNo1]

I'm sorry to hear that, Pinklady. I hope they can put your mind at rest soon. I had a mammogram & check just before lockdown - I was really lucky, and everything was AOK. Its a while since I posted this and, ironically, I have another little calcinosis lump on the front of my finger now. I saw the rheumatologist back in August and he said I had no signs of autoimmune and therefore, I suppose, no dermatomyositis. But I've been wondering about it again recently becasue I've started getting red sore patches on my knuckles.

I do wonder if it's possible to have milder dermatomyositis so there's no clear signs of having it, unless the rash and so forth is present (by the time I saw the rheumy - 11 months it took - my rash was finally gone). I know you don't always get positive blood and ANA tests for dermatomyositis so I admit I do wonder if I DO have a milder version of it and because the docs aren't seeing blood test affirmation they just dismiss me.

[Catpuss66 in reply to Chancery]

I too have grottons on knuckles rash on chest, hard peeling skin down side of fingers. Asked for 2 nd opinion as local rheum did not a lot and I was struggling difficultly in putting leg in trousers, keeping clutch control in the car, my diagnosis is primary sjogrens but I think I have MCTD , they didn’t do anything either but they did re refer to renal where after a kidney biopsy picked up 2 pathologies nephropathy & nephritis started me on steroids been brilliant had energy but now down to 10 mg knees swelling fatigue returning and now Raynards occurring . Chancery are you on the DM Facebook group look will get so much support over there.

[Chancery in reply to Catpuss66]

Hi Catpuss, since writing the original post I've had EMG muscle and nerve testing and everything is AOK. It's not dermatomyositis. Personally I think it's most probably due to insulin resistance. The kind you get before you are actually officially diabetic. It's very common and can attack muscles etc, so I'm concentrating on improving my diet and getting weight off - not easy at my age, but well overdue! Best of luck in getting a diagnosis.

[Catpuss66 in reply to Chancery]

Glad you found a diagnosis. Least you can do something about it. Best of luck

[PinkLadyNo1]

It is a worry that under current pandemic conditions, the conditions that don’t have current blood test indication will be put on the back burner. Stay safe 🌈

[MissusTee]

Funny enough I noticed on my medical records that I am anti pm antibody positive, and I have awful thigh muscle pain and neck pain so I’m really hoping that I’m not developing myosotis as I already have 4 autoimmune conditions I really don’t think that I would cope with another.

[Chancery in reply to MissusTee]

Fingers crossed it's not another autoimmune issue for you. Since writing the original post I've had muscle testing and everything was AOK, so not dermatomyositis for me.