My first Raynaud's ulcer. : I've had... - Scleroderma & Ray...

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My first Raynaud's ulcer.

Hkrysth profile image
10 Replies

I've had Raynauds for 15 years or more with many indicators for Secondary Raynauds - extremely high ANA and more. Now I have an ulcer on my index finger under the nail. My dermatologist removed part of nail 3 weeks ago but it's still very painful. He prescribed a trans dermal vasodilator 3 days ago which has done little so far except give me a headache. Any suggestions anybody?

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Hkrysth profile image
Hkrysth
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10 Replies
GlasgowHen profile image
GlasgowHen

I really feel for you. Ulcers are very painful. Have you been offered iloprost infusions? Work really well for me and heal the ulcers quicker. Also have they got to grips with what the raynauds is secondary to and considered treating that as it can dampen down the raynauds somewhat

zenabb profile image
zenabb

Is removing the nail an option?

Hkrysth profile image
Hkrysth in reply to zenabb

That hasn't been suggested. I'm not keen to go there - yet. X

Hkrysth profile image
Hkrysth

Thanks, rolybear, I've read about iloprost infusions on this site but no-one has mentioned them. I'll ask at my next appointment. Don't know what it's secondary to yet but think it's scleroderma. I'm waiting on blood results. X

lindyanne profile image
lindyanne

Hi there I feel for you too. Iloprost infusions will really help. I always seem to get ulcers under the nail - so painful, but no new ones since regular iloprost so def mention it. I've found dressing with inadine, then melolin and something like mefix to keep it in place or a tubular finger bandage . Keep it dry and change every couple of days. They do throb especially at night if in doubt get antibiotics. Hope it starts to heal soon.

Hkrysth profile image
Hkrysth in reply to lindyanne

Thanks Lindyanne, I will ask about Iloprost infusions, and thanks for the dressing suggestions, I've tried a lot of dressing options and none have been very satisfactory. I have taken 5 courses of anti-biotics for this infection as I had the infection for about a month before part of the nail was removed. I've read that Botox works well for the pain. Have you (or anybody else) tried that? Thanks again.

wendypballot profile image
wendypballot

I had the nail removed and 2 biopsies done as they thought it might be cancerous. Was put on nyfedapine, sildenifil, larsarten and nothing has helped. I also developed ulcers on two other fingers. I was told to get something from the health shop called Honeygar. It's apple cider vinegar and honey. I had nothing to loose so tried it. It's not expensive and I have been taking now for 2 months and my fingers are finally healing. My ulcers were so deep and painful but are finally coming right and not so painful anymore.

Hkrysth profile image
Hkrysth

Oh my god! Ulcers on 3 fingers! It must have been excruciating. Thank goodness it's getting better. The apple cider vinegar and honey is certainly worth trying. I keep on hearing about the benefits of Apple cider vinegar. Interestingly my mother, who also had raynauds used to use Apple cider vinegar in her salad dressing, it was delicious and she never had an ulcer. Thanks, Wendy, for this suggestion, I'm definitely going to give it a go.

in reply to Hkrysth

Very interested because I've got Raynauds secondary to Sjögren's and been looking for the cause of pain in all of my fingertips and under the tips of my nails into the nailbed. This has prevented me from touch screen typing until I found a stylus. Sometimes they keep me up at night throbbing but all I can see is redness at the tip and a deep rainbow at the dystal part of the nailbed with frequent splinter haemorrhages.

My rheumatologist has given me Sildenafil to try and I'm already on Losartan. Wondering now I've read this post if this pain might be caused by tiny ulcers as the pain has eased a lot each time I've taken a course of Amoxicillin over the past month - first for sinusitis and now for an ear infection. Could be coincidence of course but interesting to know about.

I'll post to say the if Sildenafil helps or not when I've tried it.

wendypballot profile image
wendypballot in reply to Hkrysth

The Honeygar needs to be taken 4 times a day in a little water to start then you can cut back to twice a day. Preferably taken on an empty stomach. Its not just the apple cider vinegar but the honey which is Manuke honey that has done the trick for me. It does not taste bad but rather nice - think the honey makes a huge difference. Good luck hope this works for you.

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