unbearable itching

Does anyone else with Lupus have unbearable itching nightly? My GP refuses to believe it is due to Lupus just my immune system playing up. I am beside myself from lack of sleep and the terrible itching. I take pain killers and anti histamine tablets and eventually after many hours the itching will stop. I also drink a lot of water and wondered if it was related to my kidney or liver functions, which are both affected by my Lupus, I have abnormal blood results for my liver, my GP said it is normal for me so nothing to act upon. Could this be related?

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  • If your immune system is playing up, that is what lupus is doing? My understanding of lupus is, it's attacking the body because it thinks the good cells are bad? I get intense itching sometimes, it usually is when I get too hot. In the winter I use a summer duvet and a sheet in summer. Moisturising cream also helps. If you think the antihistamines are helping, have you tried taking them a bit earlier in the evening, to see if it makes a difference? It's not great having disturbed sleep, you get up wondering why you bothered going to bed!

  • So sorry to hear you are having this happen, it is the same for me occasionally.

    Which painkillers do you take? As codeine can cause itching too.

  • I take co-codamal as this is for my back also.

  • I have an auto immune condition called PBC and since diagnosis I have developed other auto immune conditions including Lupus. One of the many symptoms of PBC is really bad skin itchiness. Ask your GP to test for this. A lot of people, including health professionals, have never heard of PBC. A lot of people (including some health professionals) also assume the condition is something to do with alcohol. It isn't. Liver function tests and I think ALT (I think) tests may indicate PBC. Perhaps ask your GP to test for this ?

  • thanks for this, I think it is related to my liver as my readings are very high but my GP does not think it is related! Will ask about this.

  • Hi. I feel for you. I've been going through the same thing. Very itchy especially at night. I have Lupus and currently under respiratory for my lungs. I seen my consultant yesterday as i thought it could be my meds. But when he looked at my bloods he said it is likely due to my lack of vitamin D and my iron deficiency. I hope it stops soon. There's nothing worse. I'm now on iron tablets and having vitamin D shots.

  • My rheumatologist said some folks get it as a side effect of plaquenil/chloroquine. I most certainly do. I have a lavender or Epsom salts bath some nights when it is bad and take Benedryl to sleep.

  • I am allergic to plaquenil, it made me vomit constantly!

  • Hello Iona. I suffer from that on the sole of my right foot and the palms of my hands and fingers - even the very tips of my fingers. It is absolutely horrible. My GP gave me a tablet to reduce itching at night because the heat of the bed seemed to make it worse. I found that running cold water over my feet and hands helped plus using a lotion containing peppermint can be soothing but nothing has cleared it for me.

    I hope some of these suggestions at least help a little.

  • I was given peppermint cream to sooth but this did not help. I have it over most of my body but particularly bottom of my back, legs and arms.

  • Hi Iona467,

    I don't have any answers for you YET, but I too have been suffering from this itching for a few months now. It was much, much worse a few months ago when I switched from Plaquenil to the Blackrock Pharmaceutical preparation & then it tailed off gradually when I stopped taking them.

    I've now managed to get hold of the zentiva preparation & the itching is about 80% better.

    So...

    I have no idea if this is drug related or yet another symptom... There have been times I have scratched so much that I've broken skin & bled. My next appointment with my rheumy is October 13th, so I'm really hoping I may get some answers.

    I tend to treat the itching with antihistamine tablets & hydrocortisone cream... It seems to help & enable me to get some sleep. Even my fingertips were itching last night!

    I'm really interested to hear what others say.

    Good luck xxx

  • Let me know if anything helps. I feel desperate as this is happening most nights now particularly if I get hot. Even the antihistamines don't help. I take lots of meds to get me over it and finally sleep exhausted.

  • I don't know , but i haven't got liver problem but ,

    If you ever watched the Disney film Ant's ,

    my skin feels like all the Characters in the film are have the party afterwards on it!

    It doesn't matter what I tried . most relief i get , until i fall asleep is a couple of minutes.

    If you do find the cause pls let me know.

    jeff.

  • totally agree with you. I wake up each hour and then have to try to get over the itchy skin.

  • I have been having this badly recently as well so I really feel for you. It's awful at night and definitely worse if I'm hot. Problem is I go to bed dressed like a polar bear as I have severe Raynauds so can't sleep unless I'm warm. The itching keeps me awake,I will be watching this post for more tips as I'm trying to avoid using any sedating antihistamines

  • I too have Raynauds so I understand your problem, I get so cold and my circulation is just terrible, then I itch when I am warm so have to take it all off. Later I am shivering!

  • Hello Iona,

    I don't have lupus but was investigated for it and have one associated antibody, but I have other autoimmune conditions including pbc I had very itchy skin with no rash.If you have abnormal liver function tests then you need them investigating

    you need to find out what is causing them.I would ask your G.P or rheumatologist.A rheumatologist discovered my pbc with a blood test for antimitochrondial antibody.The itch could have lots of potential causes but you need the doctors to help you find out what the cause actually is.

    Jane

  • Hi Jane, my liver function tests are abnormal and have been for 20 years, at one stage they read as if I was an alcoholic! Nothing has been done for it and now my GP says it is normal for me to have 'abnormal' liver readings, even reporting back to the hospital that I am being treated for this! I will def ask my Rhemy in Oct for this test as my GP said the itchiness is nothing to do with Lupus.

  • I had terrible itchy skin when I was first diagnosed with cutaneous lupus was covered head to foot in rashes I was put on pred and the itching stopped. Hope this is of some help xx

  • I was on pred and did not itch but the other side effects made me come off this med.

  • I understand that both lupus and hydroxy chloroquine cause itching. Either way I have terrible itching :(

  • Interestingly my GP refuses to believe that the itching is anything to do with Lupus, she got annoyed when I persisted and said others in my Lupus group got it, told me off for self diagnosing!

  • I have lupus, I have debilitating itching. After every shower for sure....and other times for no reason. Starts out of the blue. I know many people with lupus have. I also have autonomic neuropathy. Nothing helps the itch..nothing it has lasted up to 6 hrs.. I take a pain pill, lay down and put ice packs all over me, cry till I fall asleep. I find praying to Jesus is my answer for strength to get through my days. Hugs

  • That's interesting, I will look that up. I may have this also. It is just awful, I take lots of tabs, maybe they don't work and it just goes but it is hell and I feel so down about it.

  • Hi my name is Marilyn I have discoid lupus I have lots of itching going on even my eyes my specialist has given me daktacort cream you only put it on where the itch is you have to leave the cream in The fridge I hope this helps let me know I know what you're going through

  • I itch all over and the cream that I was given by a dermatologist does not do anything but slightly sooth the area where I have been scratching.

  • I have tried cream but nothing seems to work, the dermatologist was not interested and just said some people are pre-disposed to having severely sensitive skin!

  • It needs to be considered. Are you on Plaquenil by any chance? Not surprised your immune system is playing up if you have Lupus!! Good Lord Are you generally happy with your G.P? Are you able to see another? Who is the specialist who looks after your Lupus? Can you see them. Have you done the usual cotton sheets pure washing suds no fabric conditioner etc etc. Best Wishes to you. I have experienced similar but with an ever increasing 'carpet' of lesions that eventually put me in hospital for 10 days. Kaz xx

  • I am not on Plaquenil now as had temp of 103 and constant vomiting plus kidney infections! I do have cotton sheets. Should I not use fabric conditioner? Didn't know about this. I am allergic to most things and have terrible reaction to most things. Not happy with my GP since I changed my Rheumy - as Rheumy was not looking at my notes or my emergency visits to hospital and talking down to me when I mentioned this. I think I am seen as a problem - my GP and the Rheumy had 3 secret meetings to discuss me - the hospital administrator told me.

    Really feeling down about this as need to sleep due to the fatigue.

  • I would definitely check your laundry soap /conditioner and personal soap you bath with as well, these drove my husband crazy with itching at night, I have never had the itch that I can remember, other than hives with Plaquenel though. My rhuemy told me that wasn't possible either and 2 years later when I was taken off plaquenel, the hives went with it. good luck.

  • I am quite careful what I use re soap, I am allergic to the strong soap powders and now use liquid. Someone here mentioned not using fabric conditioner? I am off plaquenel but still the itching is there. I dread it and it makes me really feel down when it is bad.

  • Yes i do your right it drives you nuts i also can not bare anything on my feet at night not even a sheet it is annoying ecause the weather is getting colder.

  • Yes me too, often I have my feet sticking out of the bed!

  • got to have a shower soon dreading it all i do is itch for ages afterwards.

  • I can't shower, never been able to and my skin hurts so much afterwards, like nettle burns. I have to have a bath with lots of oil and put cream on afterwards. Skin can still itch afterwards too!

  • i wish i could bath but i havent got strength in my arms and legs to get myself out again lol.

  • oh, that is not good! I was like that but thankfully a bit better now!

  • Me,too!!! Can you take a bath? I believe it's a nerve thing. The water hitting the skin stimulates the nerve endings. My doctors don't really know, but I have autonomic neuropathy too. It's unbearable....ice packs helps soothe me.

  • Hi Iona,

    I really really feel for you, because I am going into my 4th year of itching. It is confined to my arms only. I put up with it for 7 months before I went to GP with it, and they gave me all sorts of topical creams and lotions, then they treated me for scabies even though they knew that scabies does not affect just one part of the body. Then I got a referral to the Dermatologist. Due to long waiting times, I was called privately to a clinic but they did not have the facilities to perform a biopsy and the appointment was to rule out skin cancer before being put back on the waiting list. I was going mad with the itch, it occurred at night and I tore the arms of myself, bleeding all over my bedclothes constantly. I tried everything baking soda, vinegar, witch hazel, itch relief cream, numerous anti-histamines, tea tree oil soap, oatmeal baths and much much more. I found that the deep freeze spray (the one for pain relief) helped for a few minutes. I then scoured the internet looking for something to relieve the itching rather than trying to diagnose myself. I found a condition called dermatitis herpetiformis which is a skin condition linked to coeliac disease, so I cut out all gluten in my diet. This action did lessen the degree of itching but did not take it away completely. Then an appointment came through for the dermatologist by which time I had been gluten free for almost 8 months. They took 2 biopsies both came back clear - but I had both arms bandaged with lanolin soaked bandages for 4 weeks which helped a bit. I'm having brain fog at the minute but they diagnosed me with a skin condition which is highly contagious - yet I've never infected anyone else and my doctor says that she has never known that condition to last for almost 4 years and counting. My doctor said that if I go back on gluten for 8 weeks to allow for the testing for DH but there is no way I am going to go back to no sleeping at all and the wanting to cut my arms off for some relief.

    My daughter found an article as we both have hypothyroidism and the article was on hashimoto's and chronic hives a quick google will get you the article. I intend to mention this to my doctor on my next visit. My rash has currently become aggressive again so this will be soon. The only thing that really helped me was ice packs, so now I keep damp facecloths in my freezer in little bags and when the itching starts I keep them against the skin with tubifast. I have also found a product called DERMASPRAY Intensive which I began using and its good too, Boots stock it and you can get it on ebay also.

    My heart & prayers go out to you, as the constant itching and lack of sleep makes you feel like you are losing your mind, I never thought that an itch could affect your whole life so badly.

    Take care

    Nee-Naw xxxx

  • Yes, this does affect my whole life so badly, life is just too awful and so hard to explain to others, they think it is all in my head. Hardly slept last night and the itching started as soon as I got up and just makes me feel desperate. OH tries to understand, he has just said maybe the coffee this morning set it off again as he thinks it is due to my liver and kidney problems. I am afraid to scratch as this makes it worse

  • I know only too well your frustration and desperation - I had actually told the doctor that due to lack of sleep and not thinking clearly I was actually at one point contemplating cutting at the itch with a razor blade. You just lose all perspective. I could not have fully understand the impact of such an itch until I had it, so I can understand why he might have difficulties understanding it. Ice packs are probably the best way to go for the present, they numb the skin and therefore numb the itch sufficiently for you to catch some sleep.

    Gentle lupie hugs

  • My partner has fibromyalgia. She itches all night and is worse after a shower. Itching is caused by a type of neuropathy and there's nothing she can do about it. Good luck getting to the bottom of it xxx

  • I too have Fibromyalgia, it is worse for me in the evening and night and I can't have a shower, never could, due to the terrible itching afterwards. MY GP also said there is nothing to do about it but she is not int anyway, as I have a lot of things going on - Lupus, Fibromyalgia, Raynauds, Rheumatoid Arthritis, brittle bones, eyes problems and prolapsed discs!

  • Autonomic neuropathy.....I have it....lupus and fibro. Know many with lupus have it. Many with fibro have it.

  • Iona....try organic cold pressed sesame oil over your entire body. Head included. It is a natural anti inflammatory, anti bacterial...keep on for 1/2 hr, wash off. I have been putting on every day for maybe 2 months. Itching very little, my scalp use to be terribly itchy ...couldn't sleep. Sometimes I wear a little beanie and put a towel on my pillow and leave it on all night. Suppose to help sleep too.

  • Hi Iona, I too get this itching, my doc says it's not connected to lupus, I wonder sometimes if doctors know anything about lupus, I also have abnormal liver function tests. One time the doc told me to cut down on the alcohol, I drink very little. I do think the itching is caused by plaquenil

  • That's interesting as my previous GP was sure I was a drinker due to my liver results! My GP is convinced it is not Lupus. I did take plaquenil but now take Methotrexate and the itching is still there!

  • I used to get it. I had Tumid Lupus first and then terrible itching mainly at night. Anti histamines did no good. My Dermatologist said it was lupus and commented ' you never know what lupus will throw at you next '.he gave me steroid cram and Balneum. After 4 months it stopped

  • Hi Iona

    I have lupus also and the itching there is nothing there when you look but after shower you see the rash, my back arms head so bad. I did get a steriod cream which helps but it is hard to use that all time. Last time at. Doctor he gave me a tablet said only could take it for three months it is called mepacrineand it is half a tablet on alternative days it did help not completely but did a bit

    But not taking it anymore back to where I started itch itch

    I hope you get sorted soon

  • My skin was in a terrible state. 95% covered in horrific rash and itched like crazy. I wore gloves in bed to stop scratching myself into a bloody state. And was given antihistamines like cetirizine and atarax which helped a little. Doctors weren't sure if it was a lupus rash or psoriasis, or both. It's only when I started stelara injections this year that things have improved. For the first time in three years I can bathe in warm water, and can wear short sleeves without scaring people.

  • Dear Iona467, I too had severe itching and no idea why it happened. I went to A&E, and begged for sleeping pills as I hadn't slept for days. The palm of my hands and the soles of my feet were itching non stop. I was scratching days and nights for nearly up to 5 days without sleep as the itching prevented me from sleeping, I was on the brink of collapse.

    Nothing would stop the itching until I saw an acupuncturist. She saved my life. I had one session with her and she relieved all the itching. I continued to see her for another 6 months as I was concerned the severe itchiness would return. It hasn't.

    The acupuncturist told me I had severe inflammation and she was releasing toxins from my body. I topped up the treatment by taking herbal medicines she prescribed for 1 month.

    Thereafter, my medication of mycophenolate, hydroxychloroquine and prednisolone has kept the inflammation down and the itchy palms and soles of feet at bay.

    I hope this can help you.

  • Nice to read all the different views and in most cases the Gp write it straight off.

    I have been trough Dermatology and have Body wash for the body for skin problems.

    If the itching was limited to one part of skin then could put in down to surface skin problems, but with been all over it seems more to be beneath the surface.

    Like most suffer with Raynunds ( well until another consultant come along and tells me different ).

    Like with all Med's there will be somewhere in there stating " can cause itching " .

    But would expect 24/7 if it was meds.

    Bedding , Tried all sorts , even None on Rubber Air mattress after stroke. Still same.

    Still itching Hot and Cold, But heat makes it worse.

    But as one of my Consultants once said to me " Sorry I can't do anything , But until they invent a Magic Pill, You will just have to manage the best you can"

    At least he was truthful.

  • I found out years ago I was allergic to a lot of the preservatives in body creams, make-up (& contact lens solutions). Over the years I have gone through £'s (hundreds) of different oils and butters to find products that would relieve itching and didn't bring me out in rashes. I now have a set few 'old faithful's' that I buy regularly. I also find that different ones suit different parts of the body at different times of the year.

    Coconut oil is a lovely light oil you can eat, rub it in, condition your hair.........

    Olive butter is a lovely moisturiser.

    Walnut butter, I use on my face and neck.

    Calendula & Chamomile Balm for irritated and sore skin.

    Aloe Vera juice and gel soothes burning skin.

    I take my make-up off with a neutral cosmetic base cleanser and tone with rose water.

    It's worth experimenting and you will find something that helps. What I have learnt over the years is that doctors don't have a clue or aren't that bothered. They're more likely to send you off with steroid creams or paraffin based crap that eventually make things worse.

    Just have a search on the Internet. There are some brilliant websites. Good luck. ToD xx

  • Hi there, I get very itchy especially at night. Mine doesn't sound as intense as yours but my husband complains I keep him awake scratching . I had crazily itchy legs the other day that lasted about an hr then stopped as sudden as it started. I have UCTD and just assume it is because immune system is going crazy!

  • Hi, what is UCTD? I am going through another itchy period and have taken my tabs but it takes ages to get even a bit of relief!

  • Hi, UCTD stands for undifferentiated connective tissue disease. (Apparently a cross over of lupus,syjorn and others)

  • thanks

  • Iona....i believe intense itching is liver related. I use sesame oil over entire body and head daily for 1/2 hr. My head is bad. Hope you can find some relief

  • Funny you should say that, I have elevated liver readings yet my GP said it is normal for me? Have had for 20 years yet although my GP marks my blood tests with 'treament given' she has never treated me for it!

  • Iona....drs dont tell you anything unless you are out of range. I am borderline a lot and the only way i know this is because i ask for a copy of the bloodwork and i read it myself. Then i research what it means. I was also itching all over and once i started taking digestive enzyme, it stopped. I still take...but i also use the seame oil that works fantastic for dry, itchy skin. Hope you feel better.

  • I have recently got my blood tests as my GP will not go through them with me, I have 4 parts which are marked 'abnormal' and she has replied to the hospital that she is treating me for these things, which of course, she is not! Saw my Lupus specialist and the blood tests being arranged at the surgery do not cover my Lupus at all so have had to have another blood test.

  • I have SCLE and itch a lot. SCLE isn't supposed to itch but mine does. SCLE isn't supposed to scare but mine has. So the doctors and our diagnosis aren't always 100% correct. I itched before my diagnosis and since, so mine isn't related to the hydroxychloroquine. Before diagnosis I thought I had nits, constantly - I work in a junior school and had 3 young children - and asked my husband numerous times to check my head and I used the nit comb all the time. But no nits - it was the lupus. I have never had liver problems by the way, just a history of eczema, allergies and asthma and now lupus. I now take 2 antihistamine daily as well, one at night that makes you drowsy - the thought being I would drop off to sleep without itchy all night. I can still itch until I make myself bleed on my legs. I also itch feet, hands, head. I try to use natural skin care products, body shop and Holland and Barrett. Steroid creams don't seem to help me much and I am very worried about over using them. I have used H&B organic coconut oil when really bad - rub in to hands aNd feet at night and wear cotton gloves and socks to bed. Works as an all over body moisturiser too, it absorbs better than you think. Now trying H&B organic aloe Vera gel, as great as a quickly absorbed moisturiser in the mornings after a shower, when I'm rushing for work. But everyone's skin is different and you have to find something g that works for you. I also think I'll never be completely itch free - that's the nature of the beast! Good luck.

  • Yes, it is just awful, my GP is not so interested just tells me to take more Pregabalin! She knows it is a Lupus problem too as so many people I know with Lupus have this, I am so fed up with it and really don't know what to do, so difficult to sleep and trying hard not to scratch but it is impossible. I have lots of allergies so I expect this is something to be expected, but the itch hurts!

  • My GP prescribed me Atarax 10mg film coated tablets (hydroxyzine hydrochloride). I take one at night. Might be worth a go, if they are compatible with your other meds. My husband tells me off for itching every night. I must drive him around the bend with it all!

  • Thanks for that, will try and get some off my GP, she will not change my meds and only gives me the same ones, same strength. I am fed up with her.

  • I know what you mean. It can feel like banging your head against a brick wall. I had problems with my previous GP surgery and left. I was left feeling emotional and frustrated and drained after most visits. My new one is much better and the staff are generally much more helpful, but I still struggle to build up a relationship with one GP as it's mostly a case of seeing whoever is there that day. 😞

  • it is difficult, my GP won't let anyone else treat me (in case she is wrong?) and has said my treatment would stop if any change, I feel the same as you. Really I need to change surgeries and suffer the consequence. My GP keeps saying that I just have to put up with it, she wouldn't though!

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