I'm writing this post because for the past year and a half I've been experiencing some wicked skin ulcers. Interestingly, they began a couple months after I started taking colchicine. I'm wondering if there's a connection.
I've recently been getting them on my toes and fingers. Their different from other skin ulcers in the way that they're under the surface of my skin, but look very similar to a typical oral ulcer. There seems to be a build up of fluid, too. They're quite painful, mostly because their location causes me to bang them throughout the day. It's likely they will come through the surface, hopefully not though.
Anyone have any experience managing these annoying things? I keep telling myself that their better than my oral ulcers and the extreme fatigue, but still.
Thank you in advance!
Written by
MoniqueKahili
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Hi, I haven't experienced skin ulcers myself - they sound awful. Out of interest is there any topical creams you use on them? Reason I ask - just look out for anything anti-inflammatory - in anything including food. I found this to a major cause of mouth ulcers etc. Take care - I hope you find some treatment that works soon.
I have a topical cream called clobetasol that's prescribed by my doctor, however, it hasn't been very effective on my skin ulcers. I mostly use it for oral ulcers. Anti-inflammatory is key! I do my best to get that through nutrition, but these damn things just have a life of they're on. Thank you for your response!
Have you been getting colder than usual? I have in the past had chilblains on fingers and toes which I think were probably more painful and took longer to heal than a normal chilblain due to the Behçet’s.
I'm pretty sensitive to temperature as it is, so I can't say that I've been any more cold than usual. I did read somewhere that circulation could be one culprit, which jives with what you're saying. Thank you!
I have had this very same problem for a good 3/4 years now I get them all over my body and face it truly is the worst thing ever... so embarrassing I wouldn’t ware short sleeves for a good year or so... I have been on dyoxycyclinefor a couple of years now and the last year colchicine also... I am now having my longest run of control with both mouth ulcers and skin lesions...
It wasn’t a quick fix when I started both meds I was even worse at first but I did at long last stick to taking them and I honestly can’t believe how much the symptoms have slipped away...
I still get the odd ulcers but they don’t seem to be developing to the unbearable level they had been for years...
I also do much more exercise and I honestly think the combination of meds and exercise is keeping this god awful disease at bay... I was in a bad way and couldn’t see it ever subsiding but it has!!!
I can’t advise on medications because we are all different but your symptoms sound exactly like mine and I have stuck to dyoxycycline with colchicine like I said I got worse before it got better...
But the best advice is the exercise I just feel my body and mind is stronger and it copes better to the symptoms, even when I feel so lethargic i force in a short run or hit the gym and it amazes me how much better I feel👍
Thank you, Hampo81! I've been on colchicine for a while not, 1.5-2 years now, and it seems to be a hit or miss. I've noticed it's put more space in between my flare ups, which is a definitive pro, but of course it hasn't prevented me from getting a super harsh flare here and there. Exercise is definitely part of my self care routine. Stress management in general is a big help for me. Thanks for sharing your experience, I've never heard of dyoxycycline until your post. I'm glad it seems to be working for you! I on the other hand stay away from antibiotics, as my body doesn't seem to be very fond of them. Keep on being well!
This question popped-up up in my email despite my not having been active in a while. Forgive me if this is out of the blue. I have had the toe and finger pre-ulcerations, threatening-to-ulcerate-lesions, and ultimate skin ulcerations. After success with high dose prednisone pulse and bumping up daily colchicine dose, I was told that treatment for active skin control would be strict Humira every 7 days, along with colchicine. It worked beautifully!
No socks, flip-flops and guarding my feet were useful. Steroid cream on my fingers for the bruising-type minor finger sores. There is no rhyme or reason for why these bad skin flares happen except for changes in weather from cool to extreme heat of summer.
I am 55 now and my skin is a mass of scars. I am still waiting for a diagnosis even though I have been through many rheumatologists and other specialists over the years. I have always had the mouth ulcers, throat, tongue from childhood and skin. Mine started on my legs and I have some bad scarring on my lower legs and ankles that as a teen and young woman was not nice, it also hit my face in my teens like a burn rash, but my doc decided it impetigo! another time caterpilla rash, I have had chicken pox more times than I can remember. The flares were always put down to various other things. Yes ulcers even.
What I can say is over the years it has spread up my body, choosing to always go outwards and in. Its still active mostly in a different way now, smaller pustules, less large ulcers and its centralised. Current bout is small spot like ones that sprang up yesterday on my shoulders back, neck and scalp. Its almost like it burns out in one area and moves on. It takes years for the scars to fade, depending, and they leave dents if ulcers, but they do fade. My legs are not so bad now apart from the blood vessel damaged one, which is still a bit dodgy looking and swells up and the superficial larger area ones that are brown, but faded. Maybe my arms will improve too. I have always had steroid creams, because no one really knew, 3 types on repeat, fusibet, fusidin and betnovate. The ones with antibiotic in them for when things ulcerate just incase.
So it will be interesting to see what the Behcet's centre make of my badly scared skin, they have just about every kind of scar to look at, at every stage, pretty much everywhere
I had mild Skin lesions for a while. The best thing for me was a topical treatment called clobestasol propionate ointment. It’s great cause it does not cause the same side effects as oral medications. It can thin out your skin though so you can’t use it in the same location continually for an extended period of time.
I’ve had what you describe all over my body, which I posted earlier about a “chicken pox-like rash” - Esp the way you describe your hands. Mine are like painful itchy blisters and they’re most commonly on my hands, but have spread all over my body during flares. The blisters on my hands stay under the skin. They hurt/itch and last a long time without erupting and im not sure cream will get to them as they seem too deep. After many tests/biopsies and no dx, I’ve been put on Dapsone in addition to my usual colchicine. So far, no blister flares for the last 3 mos, but we’ll see... never considered colchicine as a cause, but worth considering....
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