Vasculitis lesions

[Willow1414]

I’m just wondering if anybody has these lesions seen in my posted photo . Just worried has it is getting worse than ever . I’ve always got these lesions , but not has much has I have now .

Does this mean lupus is effecting my kidneys ?

Can anyone answer this , or have experience with this problem , should I be requesting a kidney biopsy ?

Vasculitis lesions has been missed off my my last 2 write ups to by rheumatology although I always have this problem ?

Should I contact the helpline . ?

I have a pending steroid injection this week to try and calm down my painful joints . I do feel very uncomfortable going into hospital for this , this is causing me a lot of anxiety just to leave my house for the injection .

🦋❤️

[Roanna]

Hey Willow, I hope you are doing ok. I’m not sure what lesson your referring to? If the blood vessels then I have had those on the nail bed a few times over the years but always went away. I’m very rough on my hands but I never linked it to my lupus though I do have kidney involvement. I think a biopsy might be overkill though. If the kidneys are flagged in your lab work for a period, then maybe a biopsy. It looks more like an injury growing out to me but that wouldn’t explain how often you are getting them.🤔 Unless you work with your hands a lot?? Maybe see a dermatologist..

Take care, 😷

[Hidden]

To me this looks more like the burst capilliaries of secondary Raynaud’s? Do you have Raynaud’s? There’s a test used for assessing the systemic progress of CTDs called the nailfold capilleroscopy and this is pretty much what they look for ie dark spots on the nailfolds - it’s mostly used to diagnose and monitor systemic sclerosis/ Scleroderma - but I believe it’s a useful bio marker for many other vascular diseases too and is entirely non invasive.

PS I have to go into hospital for this test tomorrow and am also feeling very apprehensive!

[Willow1414 in reply to Hidden]

Hi stalwart7

Thank you for your reply , yes I do have Raynaud s to add to my list . I have had a nail fold capilleroscopy done a couple of years ago , not quite confirmed scleroderma but possible , just given a leaflet at the time on Scleroderma . Funny thing is raynauds gets missed off my medical consultations now too .

I’ve had to medically retire from work well over year ago . Just thought has it’s getting worse then ever , it might be the start of kidney issues . At some point they where called vasculitis lesions .

🦋❤️

[Happykins]

Hi Willow,

I have these plus ragged cuticles and they were symptoms that made my rheumatologist think I had uctd.

Hope your steroid injection goes well xx

[Willow1414 in reply to Happykins]

Hi Happykins

Than you for your reply

🦋❤️

[DJK99]

Hi Willow - I have something just like this right now and can send a pic if you like. I wldn’t call it a lesion however just think my cuticle got stuck and then split and peeled , although I do have what I call lesions (just from comparison to those identified as such on images from clinical sites on line) on and off when flaring and my rheumy had diagnosed as lupus and vasculitic at the time. He did not equate to kidney issues, no. They are more on the finger, sometimes near nail, start as red bump, spreads out and then splits. V painful, especially the ones on a joint as joints usually inflame at same time - as every other joint in bod! It feels as though a cig butt has been put out on my fingers (thankfully not had direct experience, but you know what I mean ;). I’d show your pics to your rheumy and any other related clinicians. See what they say. I email mine to rheumy pre appointments and was v helpful the last time as did phone consult. Looking again at your pic it looks as if you have splinter haemorrhages - the black bits - but weirdly they’re on the skin? I get these but only on the nail at the top before the white tip starts. My rheumy found that very exciting the first time I bothered to take a pic and show him - had them for decades but much more now. He did all these fevered drawings of what it meant in association with my low C4 and C3 but apart from him saying my bod doesn’t get rid of toxins easily I cannot remember what else he explained and didn’t really understand at the time I think.. Anyway hope that helps in some way. Let me know if you want pics. Take care and keep safe x

[Willow1414 in reply to DJK99]

Hi DJK99

Thank you for your reply .

Most interesting read .

Yes do send through pics

Stay safe

🦋❤️

[Jmiller623]

Splinter hemorrhages or dilated capillaries of the cuticle. Seen in CTDs like dermatomyositis, lupus or scleroderma. Not diagnostic of any one CTD. My fingernails look like crap when I’m in the pits. I also get splinter hemorrhages on the nail during these times. Usually when my Raynauds is really bad. If you have a rheumatologist, I’d let them know about your nail findings. They do mean something.

[Willow1414 in reply to Jmiller623]

Hi Thankyou Jmiller623 .

I have a diagnosis of lupus SLE secondary Sjögren .Yo name but a few .

Just think I’ll mention that this problem is getting worse , I am in a flare at the moment . Maybe when I have my steroid injection , they might calm down .

🤣♥️

[DJK99 in reply to Jmiller623]

Thanks Jmiler! I didn't know you could get it on your cuticle too.. .. and now I realise I have one on my cuticle this last time - but not as severe as Willow. There is so much to keep an eye on eh! Thanks again, keep safe etc.

[Hidden]

the-rheumatologist.org/arti...

[DJK99 in reply to Hidden]

Really helpful Stalwart (if a little worrying :). Thanks so much for posting.

[Hidden in reply to DJK99]

well mine nailfolds were normal again yesterday despite having secondary Raynaud’s and a mix of connective tissue diseases and really weird skin changes plus a high titre antibody pointing to diffuse Scleroderma - so I’m none the wiser and not particularly reassured. But what Willow shows could well be Lupus-Vasculitis mix with secondary Raynaud’s I imagine - not a sign of kidney involvement unless your bloods show this already?

[DJK99 in reply to Hidden]

Thanks Stalwart - well it was the mention of scleroderma info that bothered me. I have severe raynauds (although the meds have really helped), and SLE, but my rheumy says my lesions on my actual finger skin that I mentioned earlier in this post are lupus/vasculitis. Had those for about 4yrs now... but the splinter type on nails I think I've had for many many years... although never thought anything of it. My bloods have been taken 2mths ago and I've had up and down stuff.. mainly it's my neutrophils that are, as usual, low and large red blood cells. I have had borderline concerns with my kidney from a few regular bloods last year... but last time were ok. Might have been as I was on Tamoxifen for a few months but had to come off it as neutrophils plummeted more and I felt utterly dreadful. I had the UTI last week which showed only .5 of blood so that's normal.. I often get a lot of blood but that's if I leave it too long or it comes on super quick... although this time I did leave it two or three (hellish) days as I wasn't bleeding so tried to get rid of it with D-Mannose - but that reallydidn't work, although still no bleeding. In the end GP dipped it (all via a volunteer - not their urine of course! and it showed infection so onto the usual antibiotics and was sent off and came back as clear UTI. Anyway..i shan't worry... My rheumy would have done something about the hemmorhages when I showed him the pics last time if there was an issue. Like us all, I have so many things going on that I'd bust the NHS if I had it all looked at... we seem to wait until I can't bear it any more! Hope you ok, keep safe etc and thanks.

[MissusTee]

This is what I have because I have scleroderma. If you have secondary raynauds it's a classic feature.

[Willow1414 in reply to MissusTee]

Hi MissusTee

Than you for your reply , where have you read that it’s a classic feature of secondary raynauds ?

🦋❤️

[MissusTee in reply to Willow1414]

It's a classic scleroderma feature which I know having had capilliarscope several times, and as a diagnostic tool from my rheumatologist.

[ijeasike]

I think it's Raynauds, because I have it in all my fingers. I have had it for awhile now, I had iloprost which was a very painful treatment for me. But now am on flolan 3x in a year. Just before and major seasonal change. Steroids also help to calm things down.

I hope you feel better xx

Ije

[Willow1414 in reply to ijeasike]

Hi Ijeaike

Thank you for this information , sorry to about your painful treatment . Just wondering what is iloprost , and why is it so painful for you .

Stay safe .

🦋❤️

[ijeasike]

Iloprost is meant to dilate your blood vessels. Flolan does the same thing but I just react badly to iloprost