LUPUS UK

Does anybody get purpura type blood marks come up on there face?

I don't get them on my legs, but on both sides of my face near my jawline and these last ones near my lip area. They don't go but do fade and are purple in colour, I do have red thread veins in V neck area going up neck but they r not the same thing - can anyone help?

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Jo I'm so pleased you asked this! I have purple/red purpura blisters/lumps all along my jawline. Asked my rheumy he said nothing to do with lupus but I notice they are worse when I'm going downhill.

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Thank you for replying Loopylooby x

Mine are flat but deep purple, like bleeding under skin I've just had a fresh patch come up on my face - in the grand scheme of things they don't hurt or anything but must be caused by something!!! I have to say I'm not feeling great either atm - I'm on planquinel steriods and neurontin and I still seem to have joint pain - last night that stabbing/pick axe joint pain in knees and toes that make you catch your breath! I also have red thread veins come up on the tops of my feet when I get in the shower - it doesn't seem to be caused by water pressure but maybe heat!? Saw rheumy Thursday and she's testing me for cryoglobulins or something and ANCA - thankfully I took photos of my feet as they eventually return to normal once out of the shower!! bizarre hey? I'm just a bizarre case altogether as my bloods come up normal - if it wasn't for livedo reticularis and the visual symptoms I would think I was loosing my mind!! I'm being referred to St Thomas now thankfully. I have learnt more from being on here then anywhere so very thankful for this site. Many thanks for your reply - well wishes Jo

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Hi Jo

I don't get purpura on my face but on my neck and chest. I have been told by my dermatologist that these are caused by thinning skin due to the steroids I had been on. I can't scratch or rub, even lightly, otherwise I get big blood blisters/bruises. They take ages to fade, only to get others come up. I have been told to put suntan cream on, even in winter twice daily to protect the skin. You have to be very careful rubbing it in. I have also been given an ointment Protopic 0.1% which made my skin 'crawl' and I had to get out of bed and wash it off. When I went back to the hospital a different doctor I saw said I should dilute it with moisturiser and this seems to have done the trick. I only use it twice a day, but I have noticed an improvement to the redness in general. I am also on hydroxychloroquine. Hope this helps. - Jan

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Thank you for the reply - I did wonder if it was to do with the steroids, funny (or not so funny really) how mine come up on my face and yours comes up on your neck area!! The thread veins I have on my chest were there pre steriods and started on v of my chest and have since spread up my neck a little - I did always use to really catch the sun in that area for some reason almost burn more easily - I'm not sure that I would call myself sun sensitive as I don't break out in blisters or rash like others I have read about - I'm still bumbling my way through this health malarkey though! Thank goodness for this site - can I please just ask if your being on planquinel stops all your joint pain?? It has helped me greatly but I still seem to be having flares of pain, mainly I would say due to my monthly cycle it's hard for me to get it back under control once I'm flaring despite resting and pacing - is this normal? Thanks once again xx well wishes Jo x

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Hi Jo - Sorry for delay in replying. I do still get joint pain, even though being on plaquenil. At the moment I am having dreadful trouble with my back pain and sciatica. Only exercise and massage seem to help, but I am having to do it on a daily basis. Like you, I am new to all this. Diagnosis does not seem to come easy. I have been told I have rheumatoid arthritis and lupus is still a question mark. My skin seems to settle for a couple of weeks and then flares again. I am reluctant to go on any other meds. I have been on methotrexate and that seemed to help for a while, but I started to have stomach problems, so came off them. Think you just have to go with what your body tells you and rest when you feel tired etc. Easier said that done I know. I am a lot older than you and nearing retirement (hopefully soon). I have the opposite problem to monthly cycle and that is menopause. I have been on HRT happily for many years, but my doctor has said now 'at my age' I am at risk of stroke so have had to come off. Hot sweats, forgetfulness - nothing to look forward to I am afraid. Hopefully it won't happen to you. About to take myself to Holland & Barrett for some alternative meds. Other than that - life is great!! I am still a happy person, I think you need to be and remember that there are lots of us out there all feeling the same.

Good luck. Jan x

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Hiya Jan :-)

Thank you for your reply xx I was interested to know about still getting pain on planquinel because my NHS rheumy said to me - that the planquinel wasn't working for me - I disagreed with her, I remember when I first started taking it - that it helped with the fatigue, ulcers, hair loss, night sweats, hives etc, but I was still having quite bad flares of joint pain - it seemed that once in a flare I couldn't get out of it, I also have cervical spondylosis in my neck, when the joint pain starts with me it will start kinda - in fingers, toes, knees, elbows, wrists - and more recently, shoulders. But once it goes into my neck I consider that to be a full blown 10 and I'm usually totally incapacitated, it just hurts to move or breathe, I think and I may be wrong here, that it's when it hits my neck it flares the neuro problems up, I've just come out of a flare of about 2 weeks and feel as good as I think I'm going to!! Still have residual joint pain mainly in the evening and mainly just fingers, toes and knees, but I can deal with that - I've had back problems for many years so I can empathise with you there - 6 years I've been seeing an osteopath, but now if he does to much I instantly flare so have to be really careful with what I have done and he knows that now too!! I was rather hoping the menopause may help, as I have always flared from mid cycle - since I can remember!! Hot flushes and forgetfulness just reminds me of before medication - it's the unknown though isn't it, learning to control flares and then, the rug is pulled and back to learning all over again :-/ not so good!! I have an Auntie that had a real hard time with the menopause, she ended up seeing a Chinese medicine Dr and that really sorted her out, I thought it was worth a mention just in case, as it is at least another avenue to explore. I have made my peace mentally with what's going on with myself,(mainly down to reading on here) I realise my goal posts keep moving and there are certain things I just can't do anymore (running!) Lol!! But I always think there is another way round anything, and maybe now is not my time. The most important thing for me is that I take care of my family, make sure they have hot meals to come home to, even if they take me all day to prep! that I turn up to all there parents evenings no matter what state I'm in. I'm back to that now, so still hopeful and happy xxx take care Jan, I wish you well with everything

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Yes, I get it so bad sometimes, but I use it as a gage of how thick my blood is.

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