Raynauds and Eczema

[mauvefinger]

Does anyone else out there have Raynauds and Eczema? I've had Raynauds for literally as long as I can remember, but the eczema started about 15 years ago and has been getting worse. Big problem is clothing - nice, warm, cuddly for Raynauds and loose and light for Eczema. I find I can't win and obviously the Eczema is far worse in the winter when I have to wrap up for Raynauds or nearly freeze to death with numb hands and shivering all over!

[DJK99]

Hi there -

yes had as a babe in arms (eczema although wasn't diagnosed as father not into orthodox medicine at all.. ie no docs, and cld well have been discoid lupus as really looked like it!) into my twenties... and then off and on but changed my diet to very clean, high ly nutritious, lots of oily fish and salads, fruit, wholegrains etc, no additives/sugar/nasties/kept v hydrated but v v importantly and life changing.. I stopped using Persil non bio etc and only used Boots Surcare (sensitive washing stuff) with absolutely no fragrance.. and also made sure the last rinse in washing machine had no suds! If it did I'd do another rinse, add water to the machine via the drawer until lots of sloshy clear water... and reduced how much detergent using. also clean the drawer properly often.. don't use powder, just liquid stuff.

Had raynauds since beginning of teens but pain in hands in cold from 7 onwards. Nifedipine is my saviour.. but giving me severe night cramps so going to try viagra (sidanafil) now I think, Hope that helps...

All the best, D

[mauvefinger in reply to DJK99]

Thanks for that. Unfortunately I more or less do all of that anyway! But will keep a good look at myself to ensure that I do!

[Jmiller623]

I have both but eczema came before raynauds. I had eczema as a child and the spots turned white after healing. Sometimes makes me wonder if it wasn’t actually cutaneous lupus. I find that strong steroid creams help the most. I still have dyshydrotic eczema of esp of the hands. They get little blisters. Vitamin D and Plaquenil has helped tremendously but for flares, topical steroids are all that really work for me.

Anyways, I shiver like the dickens at night time and when my hair is wet. I think adrenaline dumping doesn’t help. There isn’t much to help with Raynauds when associated with other CTDs besides treating the CTD. For some, nifedipine works as DJK has alluded to. I find keeping well hydrated, exercising and making sure my BP stays <120/80 helps. Steroids sometimes makes it worse for me. I found aspirin and Plaquenil to help but I am also aPL positive.

Problem is Raynauds is associated and caused by so many different things - vascular vs inflammatory vs hypercoaguability - that it’s treatment is quite ubiquitous outside of the run of the mill…. Keep your hands warm and use moisturizer.

I go through 3 different sets of clothes on a daily basis based on my inability to temperature regulate. I start out in shorts, changed to leggings and wind up in sweats by nightfall. You’re not alone and there isn’t much we can do to change this. I do have an Ooler on my bed which allows me to temperature regulate my mattress. This has helped with sleep at least.

Lots of ramblings but hope you find one good piece of info in there. Sending hugs. ❤️xx

[mauvefinger in reply to Jmiller623]

Much appreciated many thanks. My Raynauds has been life-long, but my eczema started as I got older. Another problem is having itchy skin just anywhere and everywhere on my body, which ultimately can turn into eczema, but itches much before that. I increasingly find that any clothes at all irritate it, and going naked isn't exactly a good or warm look!

[Poppy221 in reply to mauvefinger]

Sounds like pompholyx eczema which I get on my hands - and yes it is ******** itchy. And when you get hot your hands get itchy and if you scratch you get lumps in a few minutes and then you've got itchy eczema patches for several weeks and they ****ing ITCH. I do two things which would be less good on whole body.

1. Bought soft cotton allergy gloves, coat my hands with olive oil (from the bottle - pour a little bit into a cup for ease of use) and put the cotton gloves over to stop everything finishing up with oily fingerprints. I put my edema gloves over that. Can occasionally mean my hands are two hot at night, but overall beneficial.

2. Stop the itching before you scratch. Years back a GP gave me local anaesthestic cream which worked - but I no longer use as I don't want to use it as frequently as I'd need to. Or aloe - I have a large plant and snip off about a centimeter of leave and pulp it in my hands and rub it on and that stops the itching. You'd need to check that it won't clash with any of your medications.

3. Also experiment with how you warm yourself. I've found that keeping my body warm in lots of layers plus gloves to keep my hands warm is a mixed success - I can finish up sweating buckets and my temperature swings rapidly some days anyway. What works better for me is an electric heat pad when I need it and a warm mug of hot water to wrap my hands around when they are cold - I am contemplating buying an electric hand warmer.

[mauvefinger in reply to Poppy221]

thanks for that, and sympathies. In fact my eczema started years ago with my hands, and I learnt to use protective gloves but avoid latex . As my eczema developed more and more and I was prescribed Epimax, which I use at least twice a day all over my body, I have found that I no longer get eczema on my hands 🤞 I still use non-latex gloves though for any wet work.

[Hidden]

I had severe eczema from infancy right through until the onset of early menopause when it disappeared. Whereas my Raynaud’s only arrived with sudden onset of what was diagnosed as RA in my late 40s - but was actually my overlap CTD - Sjögren’s plus (my only antibody points to diffuse SSc)..

I still get occasional pompholyx on my hands and for me I’m convinced that eczema, Raynaud’s, small fibre neuropathy and Erythromelagia are entirely interconnected. My doctors however, including my dermatologist - never saw my eczema and now say that what looks to me like pompholyx on my fingertips and pads is petechiae relating to the vascular collagen side of things ie CTD/ petechiae/ Raynaud’s/ Erythromelagia.

It doesn’t respond to steroid creams at all and only the itching in my arms responds to IM steroid injections and I strongly suspect this is because it’s a neuropathic itch caused by degeneration and nerve inflammation in my cervical discs.

What has helped immediately when I started last year was Iloprost infusions - which was very unexpected. However in this warm weather my Erythromelagia is flaring badly in my hands again and the tiny pompholyx vesicles are starting to return like burn blisters on finger tips 3 weeks after my last Iloprost. I find only Dermacool cream works for this excruciating fingertip/ finger pad pain.

I believe pompholyx, similarly to psoriasis, is actually autoimmune and related to connective tissue disease for some like me - rather than allergic as previously presumed. When severe it is often treated with drugs such as Methotrexate these days I believe - which makes sense to me with hindsight as I’ve always had my autoimmune diseases misdiagnosed as allergies.

It is usually associated with hyperhydrosis (sweat) and that’s where erythromelgia/ EM comes in. EM causes the tissue to become inflamed (oedema) and burn and people with EM can either sweat profusely or not at all - opposite side of same coin but sometimes accompanied by Raynaud’s.

This is how mine is - so it’s triggered both by both heat and cold. Maybe the same for you? The only topical cream that works to temporarily relieve the itchy pain for me is Dermacool when my hands are burning but I have Aquadrate as well. Topical steroids don’t touch it.

Other than this menthol moisturising cream I have no suggestions that don’t require prescriptions. Although sometimes when mine starts in my palm I use antifungal athletes foot cream with a strong steroid cream and this knocks it on the head - so worth a try if you can get Tibenafin and Elocon cream on prescription. An eczema specialist recommended this antifungal approach for severe pompholyx for me years, ago along with an oral antibiotic.

[Hidden]

My daily morning EM hands all year round.

Burning red distal finger digits https://www.sruk.co.uk/scleroderma/erythomelalgia/

[Hidden]

Petechiae on finger tips when tiny EM / Raynaud’s related burn blister/ vesicles break

https://www.sruk.co.uk/scleroderma/erythomelalgia/

[Danielleo in reply to Hidden]

That looks so painful

[Hidden in reply to Danielleo]

Thanks the daily Erythromelalgia is very painful. But oddly the tiny lesions in these photos weren’t at all because I also have severe neuropathy. But 3 weeks later it suddenly felt like a mini pain bomb had burst in each finger tip with bruises next morning. I was a bit worried initially - then recalled I’ve had this before and its Achenbach’s Syndrome. Just this spontaneous haematoma working its way up into my finger tips after I’d pricked them a bit too hard with a lancet for a Covid antibody test! Good job I’m not diabetic. X

[Danielleo in reply to Hidden]

It sounds like you have a lot going on. I have Raynauds and a blood chromosome deletion of 11Q. I’m only just finding out different things and learning how to cope. I hope you are ok. Keep safe 💝

[mauvefinger in reply to Danielleo]

Thanks Danielle. That sounds nasty, and I wish you the best of luck with it all. It seems we all have problems that manifest themselves in different ways, and it's good to be able to pick up tips from others.

[marie5454]

I have eczema in my ears, intense itching, got betnovate for that, I also have lichen planus as well as raynauds, hot hands, hot feet, there's no end to things sometimes!

[mauvefinger in reply to marie5454]

Thank you all very much for your replies, and apologies I have been off-line for a few days. My problem really is that when, for example, I sit back on the sofa watching TV for an hour or so, I get intense itching in my back and often my ribs too, if I am wearing any clothes at all! As for using a cooling cream, well that's fine in the summer, but completely unbearable in the winter as I'm already so cold that it makes me shiver and shiver like mad. I think it's the waking up at night-time that is maybe the most debilitating, although the day-time itching on anywhere (and often almost everywhere) on the body is also not that good! I've learnt to cope with the Raynauds (more or less) over the years, but the generalised intense body itching is a right pain, especially as it does get so much worse with every layer of clothing that I put on.But hey, there's obviously far worse problems in life, so I'm lucky really. I just wondered how others cope with all this, so many thanks to you all.