Steroids for digital ulcer

[Crookedfinger]

I have Reynauds, Scleroderma, and Sjogrens. I have been referred to a rheumatologist but only seen GP so far. I have been prescribed steroids (4 x 5mg per day , for 3 days, then reducing number per day) . I am in agonising pain with little effect when I take them. The pain increases in the evening and over night. Has anybody had any success with taking steroids.

[welsh12]

Have you been tested for arthritis

[Crookedfinger in reply to welsh12]

No, I haven't been tested for it but I have it in my hands.

[Lupiknits]

When I had a digital ulcer I wasn’t prescribed steroid tablets ( we avoid them if at all possible because there’s a risk of them unsettling my bipolar disorder) I did become somewhat excitable last time! My rheumatologist prescribed instead fludroxycortide tape. Apparently it’s off-label for use in these cases but it was a great help.

Perhaps your GP might give the tape a go?

[MFC911]

Hi,

I have Systemic sclerosis and the same (plus many more) symptoms as you.

I do take 15mg of steroids per day but they make no noticeable difference to the digital ulcers. I also take 150mg of sildinafil and warfarin. Your problem is circulatory so you need to get the blood flowing up to your finger tip. What my Rheumatologist told me to do is get (prescribed by the GP ) some GTN Patches cut them into a strip about 3mm wide and apply them to your finger just above the top knuckle. Also get some “Fucibet” cream. Again from the GP apply it to the ulcer site and cover it LOOSELY with some Melolin taped on with “Transpor” tape. Do the dressing once a day. I usually do it at night to try and reduce the pain enough to get some sleep. I also take “Zapain” for the pain as well as Oxynorm. Oxynorm is a great painkiller but it’s Oxycodone and more addictive than heroin. It’s great pain killer but if you can try to steer clear of it would be my advice. It’s evil stuff for many reasons. I think you need to get to a Rheumatologist ASAP the longer you leave it the harder it will be to get rid of my current worse one is just starting to go after a long, long time (I won’t say how long but be prepared for the long hall). In my opinion having had this vial disease for twenty years. Is, get the Dr to prescribe you some Sildenafil, GTN Patches, Melolin, Transpore tape and Fucibet cream. It not a miracle cure but you will cut the pain by 50% the steroids again in my untrained opinion will not do much. If anything to help. You need to get the blood supply going to the finger tip.

I wish you all the luck in the world with it. All the best. Mark.

[Dargomom]

Your finger looks like my index finger often does (like it does now). I am diagnosed with Scleroderma, Raynaud's and Sjogren's. The only thing that has helped me when my finger flares up like this is Bactrim oral antibiotic, along with Nitrobid (nitroglycerin) cream. Sometimes, I have to take two rounds of the antibiotic. I put the Nitrobid on both sides of the base of my finger twice a day, covered with a bandaid, to help keep circulation going. I also take Nifedipine 90 mg/day and use hand warmers always to try to keep blood flowing to my hands. I cannot take steroids because I have an extremely high reading for RNAP antibody and, thus, am at high risk for Scleroderma Renal Crisis.

The first time this happened to me, my finger swelled to about twice its size overnight, was very red and extremely painful. There was no visible sore. I didn't know this was related to Scleroderma and I called my Dermatologist. I couldn't get an appointment with him but was able to see the Physician Assistant at my friend's Dermatologist. She took a chunk off the end of my finger to do a biopsy (results said "trauma" - there was NO trauma!). Fortunately, she prescribed an antibiotic and it eventually healed. Several months later, when I saw my regular Dermatologist, who was familiar with Scleroderma, he told me it was a digital ulcer (I showed him pictures) and he told me to NEVER let anyone cut on my fingers.

In my humble opinion, you need to see a knowledgeable Rheumatologist ASAP and get on an antibiotic. I know how painful this is and it will not get better on its own. You are at risk for losing your finger!

You also need to get tested for ALL the Scleroderma antibodies - taking steroids could be contraindicated for you.

Best of luck.

[Jacko37]

I was given steroids many years ago (along with an urgent referal to Rheumatology ). I was started on a higher dose (30mg). They did work but only for the time that I was taking them. I have Iloprost infusions now every 6 months. Although the Iloprost does help It doesn't prevent them completely. You really need to see a Rheumatology for a proper diagnosis and treatment, good luck.