Does anyone else have this problem? I was diagnosed with SLE about 3 years ago. I suffered terribly with joint and muscle pain but this is now generally under control with hydroxychloroquine (touch wood!).
For the last year or so I have had terrible itching, mostly on lower legs but also arms and thighs, along with a burning, prickling sensation and twitching. It is driving me absolutely crazy, particularly at night and after a shower. It can last up to three hours and happens most days. It is making me feel very anxious and depressed and I want to tear my skin off when it's at its worst! I presume it's some kind of neuropathy?!
I have made an appointment with my GP but couldn't get in for weeks!
Anyone else?? 😢😁
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ZoeJackdaw
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I'm probably in the same boat. Last night I couldn't sleep bc my feet were so itchy and the rash on my face is more noticeable now. I have all the classic symptoms but all my GP does is prescribe headache meds and a cream for the rashes. Idk what to do anymore...hope you feel better. fatigue hits me out of nowhere.
I too have this, it's horrid isn't it? I think it's peripheral neuropathy too and hence really hard to treat without going on specific drugs which have their own side effects.
Hope you can see a doctor sooner rather than later, gentle hug
I have systemic sclerosis Scleroderma with polymyositis and I get the itches really bad at around 8pm every night, my husband uses a small flannel which is rough enough to calm it down, but it is really irritating and drives me mad.
Every morning I cream my whole body as best I can with Cetraben, which I get on prescription, although available from Amazon. This cream seems to help and keeps me itch free most of the time. I do my back by squirting the cream on the towel and moving the towel from side to side with my hands. Cetraben was prescribed by a skin specialist when I was in hospital eighteen months ago when my condition was diagnosed.
Have you tried taking antihistamines ? I take them for my itching too, and also when I have a shower.
If you go for the ones that contain Loratidine they shouldn't make you drowsy, but I do take more than just the one a day. I have to take 9 of them just to have a shower as my itching is so bad, but they have more or less got it under control now too.
But still apply cream, if you can get Aqueous Cream that's from most pharmacists that should help too.
I now get both on prescription but if you have to pay for your prescriptions they are cheaper to buy.
Thanks for your comment. I'm glad that you have found anti-histamines to be helpful.
It's worth saying that because lupus is such a variable condition, what's helpful for one person might not be, or might even be harmful to another. You should check with your GP or consultant before you start any unprescribed treatments.
Hi, my dermatologist has just prescribed Aqueous Cream with menthol. It comes in different strengths and I've got the lowest at the moment. It is wonderfully cooling and soothing, really helps for a while!
Foss
Just a thought could some of your symtoms be the side effects of the Hydroxychloroquine, when looking at google info on it can cause iching, Hope you get some help soon, really feel for you.
This was my thoughts exactly!! I think you should keep a diary of everything you eat and take for meds 24/7 for a month or two and graph out when your symptoms are worse so you can see if it's related to something your eating and meds you are taking! I have also read somewhere that liver problems can cause chronic itching skin conditions. That's worth checking out too. Take care!
Welcome to the LUPUS UK community. If you're interested, we've got a free information pack that you can either request or download here: lupusuk.org.uk/request-info...
Sorry that you've been experiencing this. I've found something about polyneuropathy (because you mentioned neuropathy) in the Lupus Encyclopedia (Thomas Jr., 2014):
'Polyneuropathy is more commonly called peripheral neuropathy by doctors. It typically affects the nerves that are responsible for sensation and feeling things more so than with muscle strength and motor activity. Typical symptoms are numbness and tingling of the feet more commonly than the hands. This can feel like a "pins and needles" sensation, and can sometimes be associated with burning pain or pain that feels like an electrical sensation that comes and goes. Often the pain is worse at night when the person is in bed, causing difficulty sleeping. It occurs in 10% to 20% of people with SLE.'
Do you have a formal diagnosis of lupus? When do you have an appointment with your GP?
Thanks for that! It's good to know I'm going crazy! I have been formally diagnosed, about 3 years ago. I have lupus and RA.
I have an appointment with my GP mid-April. I probably could've got in earlier but the other docs at the practice don't take it seriously so this one is my last hope! I'm going to insist on a referral to a neurologist!
Also thinking of trying acupuncture but this is scary as I have a bit of a needle phobia! Anything to make it stop though!
I've been referred to a neurologist! Waiting for an appointment. Really hope they can give me something to help. My rheumy prescribed a low dose of Amitriptyline for the neuropathy but I had to stop taking it after a few days. It's supposed to be an antidepressant but had exactly the opposite effect on me! Made me feel really spaced out and low.
Thanks to everyone for your replies! It's good to know that people understand how I'm feeling, although I wouldn't wish it on my worst enemy!
I have tried antihistamines, emollient creams, anti-itch creams etc. None of these help. that's why I think it's some kind of neuropathy (peripheral-neuropathy, as Penelope-Mary said).
It just doesn't feel like a skin problem per se. I have had eczema throughout my childhood and teens along with various other allergic reactions and know what they feel like. Although they are also horrid, this is not the same. There is no rash for one thing and it just feels like it's coming from under the skin rather than an external factor.
Many thanks everyone! I'll let you know what the doc says! Hopefully she'll refer me to a neurologist! She'll prob also give me a bollocking for trying to self-diagnose!
I found this link when someone helped me on a recent post about severely itchy scalp. Perhaps it might help you too - although I believe liver problems and drug allergies and some other autoimmune diseases can cause terrible itching so I hope your doctor will help. Twitchy
I experienced exactly what you were describing when I was severely iron deficient. I would have a shower - in tepid water because it was slightly better - but I would dance around the kitchen after as I tried desperately not to scratch it when I really could have happily torn the skin of my legs. I used to say it was like running through nettles.
Other things that make my legs itch - but thankfully never as severely - when my thyroid is not properly medicated and recently after starting a course in vitamin D I don't get any itching at all. I was getting used to this being just normal. Have a shower and then spend the next couple of hours going out of your mind with itch! (Itch isn't even the right word for it!)
I get this and put it down to toxicity as my organs don't function that well, but my husband gets it too and he doesn't have Lupus, but has diabetes. I can't rub anything into my skin for rashes and bleeding; I just ride it out.
I am a physician, retired now after 50 years in practise as a nephrologist (kidney specialist). I have come onto this web-site when "surfing" for an unrelated topic and read the posts on the topic of itching in lupus. Itching is a common symptom in patients with poor function of the kidneys, which is now not as commonly caused by lupus (in recent decades there have been effective treatments to control kidney lupus and avoid kidney failure). Itching, although common, has had rather little good quality research conducted to validate the various managements that have been used. The strategies used in kidney failure may or may not be relevant to itching associated with lupus when there is no kidney failure but some with troublesome itching (pruritis) might want to beconsidered these treatments in consultation with the doctors advising on management. Two treatments effective in some patients when itching was due to kidney failure, not mentioned so far in the "posts" are ultraviolet light exposures, not always available and not used without informed guidance as there are risks of skin cancer and of causing a "light sensitive" rash, and "Activated" Charcoal".
I suggest "Activated Charcoal" may be worth a trial, despite it being unpleasant to take, on the basis of research done several decades ago for kidney patients and from the experience in patients I have treated. Sometimes the improvement was remarkable and itching ceased and did not return but in others several courses were needed due to recurrences. The benefit is perhaps because the "activated" charcoal adsorbs a circulating toxin that has entered from food, medication or with water and which has problems being removed, especially when poor kidney function. it is still often not suggested to patients despite troublesome itching and despite no reports of adverse effects from taking charcoal other than nausea or loose bowel actions which may limit dose.
Activated oral charcoal (as utilized for acute poisoning) was prescribed - as 15ml (2.5 grams) three times daily with each meal. One patient, as an example, took one dose but discontinued due to non-palatability. His intense itching, present for 6 weeksand with skin damage due to scratching, continued but a second opinion encouraged compliance. The charcoal was then taken as prescribed. He reported his progress after charcoal: "next night I was not changed”; "on second I was much “better” and after 3 days there was no further itch. Treatment continued for six weeks. When itch returned a few weeks later one further course resulted in loss of itch and the itch did not return in following years.
Many doctors may not be familiar with this therapy but they could be encouraged to consider it. It is important that the correct "activated" charcoal is used as many charcoal tablets sold will not be effective as not "activated" enough to provide enough surface to absorb toxins. The most available we have found to be the liquid activated charcoal given to treat intake of some poisons. In the USA I understand that suitable charocal may be available within capsules but over 20 each day many be needed to get equivalent dose. It is important that this treatment is supervised by a doctor as the uptake of important medications could be influenced, but surprisingly little problem has been reported when evaluated in the renal (kidney) patients treated. Your doctor and pharmacist can access the rather few medical experiences reported, if not already familiar with them, using a search of medical databases eg Medline or Google Scholar for " charcoal, pruritis and kidney".
I hope any person with troublesome itching who does take up this suggestion reports back on benefits, problems or side-effects of taking activated charcoal to add to the limited information so far published.
We would recommend that anybody considering a therapy like this first discusses it with their GP or consultant and takes it under supervision. We would not encourage people to take this without the approval of their consultants and want to warn people that activated charcoal can potentially decrease the effectiveness of medications taken orally.
Thanks for that info. I find it very interesting. I was recently away for 2 months travelling in Madagascar. As usual when I travel in the tropics I take regular doses of charcoal (I don't know whether it was 'activated' or not!) to avoid tummy upsets. Throughout that time I DID NOT ITCH!! In fact I had none of my usual symptoms which I put down to lupus. I will talk it through with my GP and consultant.
This is so interesting. I have had itching all over my body for four years and it started after they put metal in my back. I have tried everything. I am told I have normal kidney function. I get spots, patches and rashes too. I was told by a functional medicine doctor it is from toxicity to the metalwork. Where can I buy activated charcoal? I'm at my wits end as bloods don't show anything. They are watching to see if I progress to scleroderma or lupus. What a joke to be left like this. I'm on vitamin D. My iron is normal etcetera. Thank you for your help.
Hi George the NHS won't even admit to allergy let alone toxicity, it's a waste of time, they didn't know what to do about it, in fact they even suggested I go to a functional medicine doctor. Having now spent all my savings, in excess of £10,000 on this treatment, I am left to my own devices, just disgusting really. The swelling has gone down but I am left with the aftermath, however still alive at present. The pain I experienced in my back was unmentionable. I cannot take meds so they can't blame it on those either. Lots of people have itching with rods but I clearly have more than that. Will try anything. It could be the synthetic bone I guess?
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Steroid Reduction .. feel like pants !
Very red face!!! That feels like it's on fire!!
Never feel like u've slept! 
Feel Like a Hippo
