Calcinosis

[dordle]

After the piece of calcinosis has come out, what's the most effective course of action? Had a few conflicting pieces of advice. This is my first experience of this, so would be interested to hear what long-term sufferers think. Many thanks.

[Monika]

Good morning Dordle, I have calcinosis in my fingers, elbows and feet. Occasionally they come out of my fingers and then I just soak them in warm water with salt and bicobonate of soda. My elbows are completely impacted with calcinosis and when I asked the Rheumotogist on Monday if there was anything I could do to alleviate them he just said that there was nothing that could be done other than having them drilled into to release some of the calcinosis. I had my fingers drilled into 11 years ago to try and release some of the calcinosis but they came back within a few months even worse than before I had them done.I would love to hear how other people deal with them as over the last twenty years I have been given very little help with this part of my scleroderma. How did you treat your calcinosis when he came out.? I am sorry to hear you are also suffering and send lots of healing thoughts . Sending much love from a fellow sufferer xxx

[dordle in reply to Monika]

Hello Monika, thanks very much for replying. Sorry to hear you have so much trouble with this problem. Fortunately it was only a small piece, but as I had banged my finger several times prior to it coming out, the finger got infected and swelled. Had antibiotics and the nurse suggested soaking in salt water and keeping it covered until it dried out. That was about a fortnight ago and it is still red looking. It is partially under my nail. I have still got a dressing on; have tried leaving it off so it can dry up but I just knock it or get bits of fluff stuck to it! I have heard of people having surgery but that it affects the nerves and the calcinosis still returns. I will try your bicarb soak and see if that helps. Hopefully the good people on here will have lots of suggestions for us. Take care, love Dordle

[MFC911]

Hi,

Having suffered for ten years plus now I find the most effective way of dealing with it is two fold depending on how deep the wound is.

If the wound is very deep and bleeding then applying "fucibet" antibiotic cream (GP prescribed) and then a light dressing changed twice daily reducing the amount of cream over a short period(say a week) to try and keep it as dry as reasonably possible.

Alternatively, should the wound be less deep or indeed after use of the "fucibet" using a very small amount of "Flamazine" cream (Flamazine is a silver nitrate based cream developed after the Falklands war for the treatment of burns. It's strong stuff.It has a 7 day shelf life when opened and the Doc won't like giving i to you but insist because it works). The Flamazine helps the wound to heal without ulcerating and leaving a painful scare. It also helps (in my opinion to prevent the recurrence of the calcinosis.

Good luck with it. I hope it goes well for you.

Regards. Mark.

[tall-tim in reply to MFC911]

Have you had any experience of using Bactroban ointment instead of Fucibet, Mark?

[dordle in reply to MFC911]

Thanks very much for your interesting reply Mark. Sorry to hear you are a long term sufferer. I will try the antibiotic cream. Best wishes, Dordle

[MFC911]

Hi Tim,

No that isn't one I'm familiar with.

The reason I prefer the Fucibet is purely because when can see / feel that there is

an infection setting in it seem's to get on top of it within 24 / 48 hrs rather than having to resort to oral antibiotics. I've taken so many of the damn things that I am in fear of becoming immune to them so I try and reserve them for "real trouble".

[lindyanne]

I have used bactroban on digital ulcers and found it effective as long as the infection hasn't got a real hold.

[dordle in reply to lindyanne]

I hadn't heard of either of the creams but obviously worth a go.

[lifeforce]

Put Zinc oxide paste on it(diaper rash cream) and keep covered with a latex free bandage till it's gone,this from a great dermo Dr. I see a lot.Slow but it works and cuts down on pain.

[dordle in reply to lifeforce]

That's interesting, have some Sudocreme upstairs which sounds similar. Thank you.

[lifeforce in reply to dordle]

most welcome!

[Yorky]

Hello, I have just had a piece of calcium removed from the end of my thumb, at the ulcer clinic at Chapel Allerton Hosp, Leeds. It had been extremely painful since the beginning of Jan. I am filling the hole with Manuka honey, clinical grade, Activon. It is antiseptic and anaesthetic and just after a couple of days is looking good and starting to close and heal. I was told not to use antibiotic creams as they could just drive the infection deeper. This is also my first experience of calcinosis, hopefully, but probably not, my last. Best of luck with any treatment you have.

[dordle in reply to Yorky]

Hello Yorky, it is very painful isn't it. I would like to try the Manuka honey but have heard it is quite expensive. Been very lucky so far not to have had calcinosis, don't particularly want more! I am always knocking the ends of my thumbs and forefingers on taps, window catches - even the end of a sweet potato last week! What are you covering the hole with after the honey? Best wishes, Dordle

[Yorky]

I was given the honey at the clinic, it is in a tube, not a jar from the supermarket! It is called Activon, I am guessing that is it available on prescription. I then cover it with a non adhesive dressing like Melolin and hold that in place with micropore tape. I was told to change the dressing every couple of days, soak any left over honey away in cooled boiled water and redress. They do a lot of research into scleroderma at Chapel Allerton and this is something they have found has worked. Where do you live? Who is looking after you? I am about to move house into the Manchester area and I am going to have joint care between Chapel All, so I attend the ulcer clinic, and the other large scleroderma research unit under Prof Ariane Herrick at Hope hospital, Salford. So I guess I will have the experts.

[dordle in reply to Yorky]

Oh that is a shame, I was looking forwards to trying a spoonful!! Have made a note of the name, thank you. I live in West Sussex and have been under the Royal Free team for a few years. Now discharged back to the rheumatologist at Worthing Hospital. Sounds like you have made a good move with regards to medical care. Hope any future treatment is successful, Take care.

[cowhide]

I have small lumps on my knees and had my first eruption before Christmas. Now that the calcium has come out, and the inflammation has gone away, (I just managed to avoid antibiotics) I am still under my local nursing team's care as there is still a hole there. We are using inadine and then a padded adhesive dressing, I am changing every 2 days and just getting it checked once a week. I find a good soak in the bath (esp with epsom salts) helps it to clear out. Unfortunately I have more developing. I'm on a learning curve along with the nursing team as most have never seen a calcinosis.

I don't think people in general realise how often we bang our knees and fingers until they have something like a calcinosis or ulcer in which every touch is excruciating!

[dordle in reply to cowhide]

Thanks for your reply. Same here with the nurses at my local surgery, we probably know more than they do, although always very helpful. The more careful you try to be about not knocking our fingers/knees etc, the worse you seem to be! Hope you soon get some good improvement with your knees. Take care.

[lifeforce]

If the calcium is gone, clean with peroxide or something and put on zinc based cream, i.e. diaper cream, This is what my dermatologist uses too and cover with bandage. Change till gone.

[dordle in reply to lifeforce]

Sorry for late reply, was on holiday. Thank you for your help. I did try the Activon medical grade Manuka honey, which worked a treat and my finger healed fairly quickly. A couple of times since it has got very sore under the fingernail and looked a bit wet, but applications of the honey and covering it have soon cleared it.