This is my second post and I am hoping for some advice from those of you who have a lot more knowledge and experience with Lupus than I have.
My diagnosis is SLE/AS, Lupus Nephritis and Tumid Lupus. I have done really well on Hydroxy and at the beginning of Dec my Rheumy told me to reduce my dose from 400 to 200. I was happy to do so as I was felling much better. 3 weeks later I started with what seemed to be a cold that never fully developed but just sort of hung around for about 6 weeks. I am feeling somewhat less well than I wad and I started to get random joint pains. I also noticed that two of my fingers were turning white and blue. This week I have been plagued with dreadfully itchy toes which look red and swollen. About a week ago I phoned my rheumatology helpline and they sent me for blood tests. I haven't heard anything from them but out of the blue my GP surgery phoned and told me to pick up forms for a CPR test (in case I have got that wrong, it's for my kidneys) I don't know if I should assume that no news is good news regarding my blood results and I'm not sure whether or not I should tell someone about my blue fingers and red toes. Any advice?
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maurice1
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I have had the itchy feet thing for at least 10 yrs on and off, it is aggravated if I get too warm. Luckily I have a cold tiled kitchen floor which is great to stand on! Especially in the summer. They start itching first, then feel like they are burning, as you say they are also slightly swollen and red looking. This is Erythromelalgia and can be related to Lupus and other autoimmune disorders. Talk to your doctor. Avoid getting your feet hot, but don't get them too cold either, or you may get cramp.
Yes I have this - although apparently I don't have Lupus but instead a rather unusual type of RA with secondaries.
As my name here suggests I have some strange things that happen with my toes and they often itch and twitch and burn or freeze. I think this a mix of secondary Raynauds, Erythromelalgia and small fiber neuropathy in my case - but a few of my toes have hard wrinkled skin now at the joints and they are often either bright white or deep red.
I think the twitching part is Morton's neuromas but my podiatrist tells me they aren't the usual type which people get from dodgy footwear/ heels/ compression because mine are worse at night or when my feet are bare. So part of my neuropathy he reckons.
As Suzie says it is important not to let your feet get too cold or too hot because you want to avoid cracks and chillblains. I am using Epsom salts in the bath and also spray my feet nightly with magnesium oil. Not sure whether these are helping yet or not as it's early days -but worth trying at least. I suggest you tell your rheumatology team and GP about this too so it can be monitored as part of your Lupus.
Your red itchy toes sound like chillblanes to me. I get them every year, you should tell your GP and they will give you medication to help it. The blue fingers could be the same but I'm not 100% as I have only ever had it in my toes. I hope this helps 😊 x
Are your fingers cold- as could be Raynods in your finger and toes. I would stay on top of your Drs as so many Patients you don't want to slip to the way side. Feel better!
White andblue and purple fingers sounds like Raynaud's. I keep a good supply of hand warmers in the house and they last about 8 hours. I never go out to dinner in an air conditioned restaurant without my hand warmers. Thank goodness I live in Florida!
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Burning Toes!
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