Severe Raynaud's

[Verily]

Hi I have severe primary Raynaud's and have iloprost infusions every month at the minute the problem I have is like cold running water from my knees down to the ends of my toes, can anyone shed any light on this? I also get aches and pains in the same place. Any advise is appreciated.

[Bkart]

Hi Verily,

I’m sorry I haven’t any advice but just wanted to say I have a similar sensation, like you mainly on my legs but not as severe. I get the distinct sensation of water dribbling down my leg but only a short distance, it’s so weird and real that I look down expecting to see that I’ve splashed water onto my legs! I have Raynauds and started to get Scleroderma symptoms two years ago, which have progressed alarmingly in the last four months. This feeling of water dropping onto my legs doesn’t happen too often but is quite unnerving when it does, it only started since my other symptoms began. I wonder if it’s some sort of neuropathy but hopefully someone else might have an explanation.

[Verily in reply to Bkart]

Thank you so much for taking the time to reply, it is a strange sensation but I did wonder if it was that I needed more medication besides iloprost infusions. I am going to get in touch with my rheumatologist as I have other problems as well. X

[Intimeslikethese]

Interesting. I get the same sensation on the outer right leg at bottom of my calf. It isn’t often nor long lasting but initially, it caused me to think the same, water or that it was bleeding. In that same area, two weeks after my bivalent covid booster, I had a lump rise in that area for about a week. My doctor said the lump was my lymph node reacting. I never mentioned the sometimes water feeling, though.

[Verily in reply to Intimeslikethese]

Mine usually starts when I am cold and lasts most of the day and evening. Before I started on iloprost infusions I used to have this sensation of running water all through my body, just find it strange that it from my knees down to my toes. Thank you for replying and hope that you keep well XX

[OldTed60 in reply to Verily]

interesting that you have Iloprost for severe Raynaud’s as yours doesn’t sound like most primary - more systemic to me? I had this sensory stuff for years along with Raynaud’s and had various rheumatic diagnoses to explain - finally attributed to Sjögren’s related small fibre neuropathy and Erythromelagia. It may be worth looking up conditions that can cause sensory disturbances in the peripheries because not all show in the bloodwork.

Iloprost has helped my nerve pain and means I can type and hands swell less overnight. I’ve never met anyone else in my hospital who gets it and was told they stopped it for primary Raynaud’s sufferers now in my hospital. Apparently there was a right hoo ha about this from a few patients but this happened before I started getting them. . Always nervous that it might be stopped as no nailfold changes or ulcers so far. But my rheumatologist has arranged for a portacath to be installed for ongoing Iloprost next month so hopefully not.

[Verily in reply to OldTed60]

Thank you for your reply oldted , I've been saying for years that there's more to my ailments but to no avail. When I next see my rheumatologist I'm going to ask him for the full tests as I need to know what is going on. You take care xx

[OldTed60 in reply to Verily]

Definitely push for further testing because primary Raynaud’s isn’t normally that severe as far as I know.

Mine is atypical due to also having Erythromelagia - which I think works in my fingers like a rather violent and painful vasodilator and prevents nailfold capilliary changes. I did test this theory out on the doctor performing my nailfold test and he strongly agreed. My fingertips and pads wake me most mornings red hot, swollen and burning all year round. But otherwise it’s my Raynaud’s which has become more severe over time.

And for ages I was seronegative for all these rheumatic diseases but then, once off immunesuppression - my ANA went highly positive with scleroderma pattern and things changed. My Sjögren’s is antibody negative so I was diagnosed by lip biopsy in the end. I knew I had it because I had sicca and neuropathy - including burning feet and hands and mouth, water dripping and cold wet thighs so lip biopsy confirmed. Then came the consistently high scleroderma antibody which has all my doctors head scratching now.

Things can change but they do need to look!

[OldTed60 in reply to Verily]

ps I just recalled something a rheumatologist said during a recent SRUK webinar about Raynaud’s. He explained that red flag distinguishing primary from secondary would be if your thumbs are affected. Apparently thumbs wouldn’t be affected by primary because the blood supply for them is a different one to the vessels supplying my main fingers. I think he said thumb involvement shows that a more systemic secondary vasospastic process. If you didn’t watch it then it would be available somewhere on the SRUK list of recent webinars to watch as YouTube now I’d think.

[Verily in reply to OldTed60]

This is very interesting and knowledgeable, thank you, I will take this up with my rheumatologist x