Not raynards

[amandajane76]

Is this typical if vasculitus

[dar58]

My computer doesn't get the colors correct. Are your toes purple? I had a blood clot in my lower aorta at the bifircation. It stopped the blood flow to both my feet and legs although the right was more affected. I had to have surgery and then a year later it happened again and had the surgery a 2nd time.. So far so good, been almost a year again. I had pain at first in my hip areas when I walked and as it stopped the blood flow more and more they got real purple. Be careful don't take any chances and get it checked. Good luck!!

[misty14]

Hi Amandajane

My feet burn there and I'm treated for Vasculitis and Raynauds. X

[amandajane76 in reply to misty14]

How can they treat it

[misty14 in reply to amandajane76]

Hi Amandajane

Vasculitis is treated with immuno-suppressives and steroids.

Raynauds is treated by a group of drugs called calcium channel blockers and other drugs. I'm taking Adalat for it and it's helped greatly with no side effects. Hope that's helpful?.X

[EOLHPC]

Looking at your photo, I'd say that I've been living with v similar redness with burning sensation for approx 10 years which flares 24/7 all year round even while my lifelong raynauds is flaring 24/7. In my case this is diagnosed as simultaneous erythromelalgia & raynauds secondary to what my Vasculitis & lupus rheumatology clinic thinks is a primary immunodeficiency with my infant onset SLE + sjogrens & my other multisystem autoimmune conditions as secondaries.

But I've never thought of my version of this redness as a rash. I do, however,vget what my consultants call proper vascular rashes on my legs, ankles & feet, but these are mainly on skin covering where it's thinner over bones, eg on the arches of my feet, on the long bones running from knee to ankles, on the knee caps...as I understand it, this is one of the reasons my consultants are watching me for vasculitis. I'm lucky in that prescription topical steroid cream helps these vascular rashes clear up (betnovate)

I'm 61 and only began systemic meds for SLE 4 years ago. My impression is that daily hydroxy + daily myco have slightly damped down the redness, but mainly I just lifestyle manage including using OTC products like Shea butter, arnica gel etc

Hope something in there is helpful

PS if anyone wants more info re erythromelalgia...I've put some in my reply below☺️

[amandajane76]

Thanks.i still don't have a firm diagnosis but they want to put me on methotrexate

[amandajane76]

P.s all bloods been normal

[Snowdragon]

Iget that but also the soles of my feet. My doctor at the surgery who i spoke over the phone with said raynauds and gave me medication,but I also have vasculitis and was wondering if it was also the the thing starting with E (sorry cant remeber it but saw it on here)Will have to speak to my rheumy when I see him, but now started getting my feet going into cramps the past 2 days so painful aven;t had that in a while.Also have Lupus,sjorejens,osterperosous,rheumatoid,gall stones etc lol just need a new body. I soak my feet in moisturiser every night for the redness as it is cold,no matter my feet are cold most of the time.Also lost my mum early hours of yesterday morning so feeling really down. Any help in what to do about the cramps? xxxx

[amandajane76 in reply to Snowdragon]

Aw I am so sorry

[EOLHPC in reply to Snowdragon]

So sorry about your mum....v much feeling for you

Is the thing starting with e erythromelalgia (which I have simultaneous with raynauds)? I too soak my feet in moisturiser to cope with this (Shea butter helps me a lot)....anyway, I won't repeat cause there is enough in my reply above to Amanda. There is a vvv good assoc that gives great info & advice:

Erythromelalgia.org

And they have a v good Facebook page too:

facebook.com/erythromelalgia

I've had a lifetime of bad cramps in legs & feet....daily hydroxy & myco has helped reduce these cramps, but what has virtually stopped the cramps altogether is my ortho surgeon's diagnosis of sle-caused tendon tightening, for which he prescribed rehab physio which involves a lot of hard work ongoing but has paid of big time: life without those awful cramps is better!☺️

[Snowdragon in reply to EOLHPC]

Hi Barnclown. Thought i would let you know,saw my rheumatologist yesterday and he said it was erythromelalgia,but what surprised me was he didn't say anything about seeing another doctor about this or any treatment,just said nothing can be done.I feel like crying or giving up. Coping with lupus etc gets me down enough now tthis. Please can you tell me any medication you tried or what you Do besides the shea butter. I am also in my sixties. xxx

[EOLHPC in reply to Snowdragon]

Am v much feeling for you snowdragon....had been imagining you much younger than me....but of course erythromelalgia (EM) is really tough no matter how old you are.

I'll try to tell you how I cope with EM, but please will you tell me: did your rheumatologist diagnose you by clinical examination & your description of symptoms alone? Cause there are lab tests that can be done, but some Drs don't bother. My EM was diagnosed clinically in 2010 before my infant onset lupus was re-diagnosed & treatment with hydroxy begun. Back then, I think my EM had been giving me gradually worsening symptoms for approx 5 years, whereas my raynauds (RP) had been a lifelong problem.

Anyway, my experience is that EM can be more tolerable with careful lifestyle management, but may also respond to meds to some extent. The erythromelalgia assoc website includes info on both meds & lifestyle stuff, and the erythromelalgia Facebook page gang can help you with these too. (I posted the web addresses above in this thread)

Apparently aspirin is one EM treatment....but I'm not trying that until my Drs prescribe it. My research taught me that there is no 1 prescription med for EM: each person's EM responds too individually, so it's a case of trial & error apparently. Lucky for me, hydroxy & myco do seem to have slightly damped down my EM so it's more bearable. But it's still v hard to cope with...I make sure I can change my footwear & hand wear as necessary depending on where my cycle of EM & RP are round the clock....I stick my feet & hands out of the bed clothes...I wear sandals all year round etc etc. I've tried chemists' OTC cool sprays & chill packs...arnica gel seems to help, but I find Shea butter moisturisers help most. I find the daily juggling between being cold & hot takes a lot of effort....but it's worthwhile once you get the hang of it

So, please keep your chin up: now you've got the EM diagnosis, pat yourself on the back!!!! That's a BIG achievement: knowledge is power!!! Now you can begin the experimenting with EM lifestyle management stuff....getting to know what works for you gradually. I can't recommend the Facebook gang enough. And you can show your Drs you're doing what you can...which means you're doing your bit and it's up to them to do theirs to help you too

Take care XO

[Snowdragon in reply to EOLHPC]

Hi barnclown. I took a picture from the ER site which showed what my feet look like and he also looked,but no suggestion about any tests,just more or less said there is nothing that can be done. i have been on Hydroxy for quite a long time.Tried aza made me sick tried another was doing ok then got a chest infection so told to stop taking it.Thank you so much for your advice. xx

[EOLHPC in reply to Snowdragon]

that sounds about right....EM is not something many drs are familiar with...but i think the incidence is increasing, and this can mean that better diagnosis & treatments will increase too. you've been having a really tough time...i hope you can get onto meds that agree with you, and i hope it helps to know you're not alone...those 2 websites have helped me a lot.

take care XO

[Snowdragon in reply to EOLHPC]

Thank you xxx

[EOLHPC in reply to Snowdragon]

🍀❤️

[Snowdragon]

It started last year after i had a sickness bug for 8 weeks,i remember my feet burning and i used to let them go cold.Then early this year got childblaines which i havent had for years,a few eeks later the burning again which my doctor thought was raynauds and gave me nifedine(hope spelling is oklol) this did help but with having cold feet most of the time the burning didnt seem the same as what i had read about raynauds even though my toes etc did go blue and purple,which made me think like you I have both. The cramps started monday night,again havent had them for ages.Last night feet burning i had to take socks of to cool them.The redness is my toes and just below and they swell and the ball and heel of my foot. Thank you barnclown I am on hydroxy.

[amandajane76 in reply to Snowdragon]

Has your Dr given any diagnosis other than raynards

[Snowdragon in reply to amandajane76]

Hi Amanda. It was what he diagnoised on the phone as I couldnt get an appointment as the next day was weekend then bank holiday. I shall be seeing my rheumy on monday just hope and pray he will listen.Just tried to have a lie down and had to get up as they were burning.

[amandajane76]

So what the difference between vasculitus and erthromalygia

[EOLHPC in reply to amandajane76]

I'm told that there is a world of difference between erythromelalgia (EM) & vasculitis. but, as so often, the difference is complicated. 4 years ago when I asked my head of rheumatology lupus & vasculitis clinic why the dept didn't seem too concerned about my erythromelalgia symptoms (which I was having trouble managing) she said that so long as the EM symptoms flared in a 24/7 pattern, with no actual permanence in that pattern (I.e. my burning redness changes in a 24 hr flaring cycle, rather than just staying permanently burning red) then it's not vasculitis. The implication was that vasculitis signs & symptoms appear and do not go through a 24 hr flaring cycle. Even so, as I understand it, I'm being "watched" for vasculitis.

But I think you'd possibly get a better explanation from the erythromelalgia Facebook gang:

facebook.com/erythromelalgia