Raynaud's in dark skinned patients

[CarerEdi]

Hi all! My mum has secondary Raynaud's, like triggered by heart meds that unfortunately, she has to take. Diagnosis came very late as she didn't get the white-blue-red which they were expecting. Straight to white under the nails and fingertips, it then progressed straight from that to black dots which were the start of necrosis. By this time, she couldn't use her hands at all. The black dots scared the doctors into realising what it was - her fingers were saved by immediate GTN patches, and swift iloprost 5-day infusion. Apart from looking at colour at the end of the fingers, how can she know she needs urgent care? I think she just gets used to the pain 😩

[OldTed60]

hi I’m sorry I can’t help with your question. But I’m hoping others will come on and advise from experience. Meanwhile I’m thinking pain would probably in fingertips would probably be the best way to know if there were more digital ulcers starting. If it’s painful then she probably needs Iloprost. Most of us on Iloprost get this as a regular infusion not just a one off.

[CarerEdi in reply to OldTed60]

Thank you that's helpful. I've been surprised that GPs knows of Raynaud's yet not much on how to treat it - severe cases seem to be too rare. She's getting another iloprost in Oct, the rheumatologist has said she'll need it annually, I hope she can last til then.

[OldTed60 in reply to CarerEdi]

I’m glad if I helped a bit. I have systemic sclerosis and this is usually associated with the most severe end of secondary Raynaud’s. Has your mum ever been tested for systemic autoimmune diseases such as Lupus or Scleroderma I wonder? I’m sure he’s rheumatologist will have checked but just in case not then it would be worth checking as systemic sclerosis is associated with with heart conditions too.

[Lupiknits]

I’m so sorry this happened, and that I can’t be of much help. I have Iloprost every month and it makes a good difference. I’m glad they are planning more Iloprost. I agree with OldTed that it might be worth asking for, or checking that, they have looked at her bloods to see if she has an autoimmune disease? Mine was first spotted when my “cold hands “ were, in fact, Secondary Raynaud’s. Systemic sclerosis now.

I hope things go well for both of you x

[CarerEdi]

It's a bit up in the air - the Rheumatologist confirmed it's secondary, she also tested positive ANA and Ro+, but said it's inconclusive of the cause and they didn't go any further. I think you are right, we'll have to watch out for it and probe perhaps a bit at the next appointment? She's also not a person to shout out when in pain (mother of 4!) but definitely it was was she said her fingers felt 'sharp' back when they were ischemic. It is true it's clearly harder to tell on inspection with darker skin (you don't get the 3 colours, the fingertips and nailbed just get whiter) but now we will try to get seen again by the rheumatologist as her nails are too pale but not what she describes as painful. Just gloves 24 hours a day...

[OldTed60 in reply to CarerEdi]

That sounds very autoimmune to me - +anti Ro usually quite specific for Sjögren’s but can also be Lupus, Myositis or Scleroderma. It’s interesting what you say about darker skin and Raynaud’s because I’m opposite and extremely fair skinned white hair - my dernatologist once explained to a student as just one point away from albinism. So my Raynaud’s shows a bit differently to the classic images on most websites too. I don’t get the blue fingertips often though - more blue toes. Otherwise straight from white to red - and often only the red is obvious. My dorsal hands usually go blue though which I guess makes it a bit easier to see the white changes. My scleroderma was only confirmed by an expert rheumatologist last year based on systemic symptoms, +antibody and apparent nailfold capillary changes he observed on dermascope.

[CarerEdi in reply to OldTed60]

Interesting - looks like they need to avoid relying on the 3 colours diagnosis thing anyway. The wait for rheumatologist appointment is long - it is the NHS...I'm not complaining entirely, it is free but you access specialists via the GP and ours clearly didn't have experience with severe Raynauds and we were equally ignorant. Thanks for responding x

[OldTed60 in reply to CarerEdi]

Blue is mainly associated with secondary to scleroderma I believe. I wouldn’t get too hung up on colours - just focus on treating pain and badger her GP to expedite if other symptoms eg reflux, breathlessness, renal problems start or worsen. X

[Bkart]

Hi,

I’m sorry to read about your mum’s late diagnosis of Raynauds, mine was finally diagnosed at the age of 69. I then realised that I’d had the disease since my early 40’s with painful ulcers (I just thought it was because I owned a livery yard, working with horses). I also have cardiac problems and was put on LOSARTAN and AMLODIPINE, without realising why, my ulcers gradually cleared and the Raynauds went into remission so to speak. It came back with a bang at age 69 along with many Scleroderma symptoms. I still believe though that the heart meds are mainly controlling the ulceration and hoping that continues, however the pain is really bad. I now have a diagnosis of UCTD as my bloods are negative ANA.

I was interested that you said your Mums Raynauds was triggered by her heart meds, do you mind me asking what meds she is on as I’m on several. I use a GTN spray for unstable Angina and I have wondered if that helps with the Raynauds in some way too. I think late onset i.e. from your thirties onwards can be indicative of autoimmune disease also. I mostly go from red to white with a Raynauds attack too, I think mine may have been triggered by contact with silica dust and toxic chemicals.

I hope your mum is coping with all this as depending on her age (elderly?) symptoms can easily be attributed to just aging which can be frustrating. It’s good to know she has someone to look out for her, as yes we ‘oldies’ tend ourselves to accept these symptoms. Wishing her and you all the best.

[CarerEdi in reply to Bkart]

Thanks so much. She was diagnosed with diastolic heart failure and a mild murmur Oct 23. She was put on spironolactone for that and bumetanide to reduce the build up of fluid in her legs + apixaban blood thinner. By mid-Nov she was wearing gloves 24 hrs and experiencing what she called sharp tingling in fingers and toes (really pain). She was then moved on to Jardiance instead of spiro which made her hair grow (!) but made the Raynauds even worse. At that point she unwittingly developed necrosis in the fingertips, farcically only then was the Raynauds formally diagnosed and mum put on emergency GTN patched and iloprost 5-day drip which saved them. The GTN really helped, administered as patches to her pulse points, she's still using them now. Last month she developed AF and now all that + angitil. However it's a bit chicken and egg, she'd been told in Oct by rheumatology she didn't have Raynauds at all, probably that's where maybe if she'd had the 3 colour thing they'd have not said that. Blood test done in Jan proved she did, having ate Xmas dinner with gloves on and some difficulty!

[CarerEdi in reply to CarerEdi]

She was tired alot in the run up to Oct, which we now know was the heart, so I am assuming the heart issue came first but who knows...

[Bkart in reply to CarerEdi]

I do feel for your mum, I had a heart attack at age 47 which was caused by an undetected congenital hole in the heart which let in a blood clot from the lungs. Eleven years later I was diagnosed with AF, I’ve had two catheter ablations but I feel it has now returned. I take Warfarin which I’ve recently read can have benefits for Scleroderma/Raynauds, you have to be monitored with finger prick blood tests but it’s not too onerous, although I do know with apixaban you don’t have to be monitored but it might be worth discussing with the GP or Rheumatologist. I also take furosemide to reduce fluid in my legs and around the heart. I’m glad the GTN patches help, I will ask at my next Rheumatology appointment if they would be suitable for me also. I hate it when symptoms are dismissed just because you don’t fit the box, we’re all different and our symptoms can differ widely.

AF can be very difficult to spot especially if it is paroxysmal, like looking for a needle in a haystack my Cardiologist said to me. So it could be that your mum may have had AF for a lot longer than thought as AF can lead to heart failure. It’s so good that you are knowledgeable about her conditions and can support and fight her cause.