This Infernal External Itching!!!

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Hello there! Tonight I had to write about a common symptom that is experienced by lupus patients the world over. It is itching. 

I am interested because as I write this, I am literally stopping and scratching. The itching comes and goes. It is horrible. It can range from my scalp to my legs to my arms to my face and neck. Well, you get the point. I scratch so hard, especially in my sleep, that I have been known to draw blood.

In the interest of research, I visited several web sites and health forums to see if I am in the minority or majority.It appears that most lupus patients experience this itching at various times in their disease course. Nice to know, yet I wish there were some types of treatment to help the itching stop. Personally, I tend to over take my benadryl, like every three hours or so, to help lessen my itchies. Does it work? Some, but not really well. 

I read that some use cortisone cream. That is my next course I will try. For some reason, after reading others experiences, it seems that itching either precedes a flare or appears during a flare. The concensus seems to be that it appears when disease is active. Yippee!

To help those who do not have this symptom, let me explain how it feels. When you get a normal itch, you scratch and it is taken care of. This itching I get is bone deep, unrelenting itching. No amount of scratching seems to help. It absolutely demands attention because it is hard to stop it. Even in sleep, it can and does wake you up. I have drawn blood from night scratching. Even then it is not stopped.

Apparently the medical community in general are not sure whether lupus is causing this itching or if it is some other underlying issue. Some medical professionals think it is caused by dermatomyositis. Others think it is a form of vasculitis. I have posted about vasculitis in this blog before so if you want to read more about it, feel free to check out that post.

This time I am going to see about dermatomyositis. From what I read on the Mayo Clinic site, it is a form of skin rash that develops. Well shoot, that is not what I have. I do not have a rash where it itches, just this underlying itching. I may get a rash after I scratch it to pieces, but that would hardly be the same thing.

So, I will try cortisone creams and see if they help. I will update the progress or lack thereof. In the meantime, I wonder if you all could tell me if you have experienced this infernal external itching yourselves. I am interested is seeing how many of you have had this too. This is not a scientific study by any means, but I am interested because I wonder if it is indeed lupus related or something entirely different. Your feedback will help. Thanks and here’s to pain free days!

Jen 

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23 thoughts on “This Infernal External Itching!!!

  1. Beth

    OMG!…..I’m not the only one!!

    Now in my 60′s, have had ‘arthitic pains’ all my life. Had long term NSAIDs from my 20′s.
    In my 30′s developed furious itching on my lower legs every morning after shower or bath with nausea, fainting etc. Piriton tabs helped after about an hour and my kids got used to the fact that when it happened I could do nothing except lie down and scratch ferociously till it stopped. No relief from changing to non-bio washing products etc, tried everything. finally managed it by having very hot baths and giving up showering at all.

    Was diagnosed with SLE a year ago when I developed ‘bruising’ on my arms and legs following a painful elbow diagnosed as ‘tennis elbow’ (Have in fact had this diagnosis twice before and had steroid injections for it in the past.)
    Looking back over years of painful joints, extreme tiredness, thyroid problems (have been on thyroxine for 15yrs) I am convinced it was Lupus all along.
    Have now been on antimalarials for a year and the itching came back when I was given Quinoric instead of Plaqenil, now unrelated to bathing but always in the morning and even more ferocious. The only remedy was to plunge into a very,very hot bath when the pain from the hot water was worse than the painful itching which reduced me to tears! Back on Quinoric and it eased somewhat but became more generalised.
    Currently I itch daily anytime of day and lately at night too. I take Chlorphenamine at night, tetrazene in the morning and still itch all over though not as severely.
    My rheumy and my GP do not think it is because of the Lupus or the medication but cannot offer any other explanation and this week my GP refused to send me to a dermotologist despite my consultant suggesting it!
    The only time I have been free of it is the two occasions this year that I went on a 10 day course of steroids for two bad flare-ups.
    As i type I have itching on my right eyebrow and neck, left hip, and back of neck. (s’cuse the scratching!! Last night was paticulary bad.

    So that’s why I have spent the last hour looking for some answers! There may not be any but it helps to know you are all out there!! Many thanks!

    • Beth,
      You are most definitely not alone! Many of us have experienced it. It is hard to talk about because the itching is so very intense and painful even. I am glad you found us! Feel free to join in on the conversations anytime! ~Jen

  2. Theresa Hammer

    I was diagnosed in 1995. And for the last several years have dealt with the itching issue. It has been the most tortuous symptom. I googled today to see if ANYONE has had this problem because (like most of you) my Rheumy doesn’t have a clue (and I really like him). over the years I following his suggestions and say a dermatologist who looked at me like I was crazy because “there isn’t a rash” but did do a punch biopsy. I went to see the Neuro people just in case. Nope, nothing there. Strangely I only get it really on my left arm. So naturally everyone assumes it’s sun related because of my left arm being on the window when I’m driving (I live in a very sunny location). Nah Not it. If so why does the sun only affect my left arm….. and why when it’s winter and not sunny …. or nighttime and it’s pretty dark in my room …. But I can relate on the experience. It has been to the point of unbearable. I almost woke my boyfriend up the other night while we were vacationing to take me to an emergency room. But realized they wouldn’t do anything either. I got through the night with ice on the arm – freezing the skin. I have access to a medical numbing solution (they use in surgery) which offers some relief briefly. the only other thing which has worked is a concoction I make up with natural food products as a facial. I slather it on, let it dry and wash off and it does an ok job.

    • Teresa you are not alone! I am glad this helped you to know that! Sorry you deal with it, but at least you can know that others understand and really that is a big deal! Please come back often and jump into the conversations. ~Jen

  3. caridad Mendoza

    I am glad I’m not crazy like you all said; I’ve been itching for years now! I shower and scrape my body with no relief, my arms itch some days so bad and unconsciously I scratch them even in my sleep, then I bruise so bad it looks horrible and embarrassing. I work in a hospital, as a nurse practitioner, so I will cover my arms with ace bandages to hide the bruises and bleeding. It actually started back in 2005, rashes in my face, arms, legs, my abdomen, and back so horrible going thru many biopsies with no results. Of course prednisone shots will help and creams. I questioned my dermatologist about Lupus and she swore that it was not even thou I had forever positive ANA and sed rate. I finally went to a rheumatologist in 2010 and I tested positive for Lupus and Sjogren’s which explained all the symptoms beside the rashes, such as chronic fatigue, joint pains, intolerance to the sun, dry mouth and eyes to the point that my tear ducts have been plugged to relieve the dryness. It is impossible to sleep more than 3 hours due to the itching, the pains, and now the dry eyes; it feels like sand scratching my corneas. Back to the itching is amazing how not even the doctors understanding or do not believe is related to Lupus. I’m glad I could share and learn that this syptom is related to Lupus.
    Caridad

    • Caridad,
      I hope that doctors will realize that lupus can cause this issue! I mean, come on, just the people who have posted here shows that it is something that should be looked into. Thank you for joining in and I hope you feel better knowing you are not alone in this!~Jen

  4. I thought at first I was allergic to my meds, I was so itchy all over my arms and neck. I changed meds and still itchy, took benedryl, still itchy, used cortizone cream, still itchy. It comes and goes but, I am usually itchy on my arms or legs every day. Glad to know I’m not alone or crazy. It helps so much to hear from people who are going through the same things I am.

    • Johna,
      I get this sometimes and other times not. No rhyme or reason but still happens. I feel your itching! Just joking but yes, it is nice to know there are others out there like me!

  5. Eva

    Does anyone else have the problem where they dare NOT sweat? It’s almost like I’m ALLERGIC to my own sweat!! The minute I start sweating I start itching from head to toe and it’s UNBEARABLE!!!! Even after I shower I just sit on the bed and CRY because it won’t go away! Am I the only one with this problem?

    • Eva,
      I have never had the issue you mention but I am sure if someone out there does, they will respond! My itching is crazy and only when it feels like it. I have no control over when I itch, I have to react when it hits. I use cortisone cream topically on the rashes and benadryl for the itching. Hope this helps! Jen

  6. Kenyatta

    I am so glad I found this website! I was beginning to think something was seriously wrong as I have just begun to experience the itching for no reason. I was diagnosed with Lupus in 2001 and this is my first episode (itching). It is only in one small area on my leg but it’s a relief to know that apparently this is a common occurrence among Lupus patients.

    • I totally understand where you are coming from! I started out with little blisters on my fingers that itched until they burst. That was my first experience with itching and lupus. Who knew? I think lupies seem to experience itching more often than the general public, due to the disease attacking the centers that control the itch mechanism. We just learn to deal with it. Hope you jump in more conversations! Thanks so much for your input! Jen

  7. Becki

    Hi Jen,

    I have had Dermatomyositis for 18.5 yrs now. I definitely have a rash and for the last 7 or so years, the rash has been out of control. Nothing gave me relief until last year when the rash came to a crisis point and they put me on Prednisone. I don’t know how it is for Lupus but for DM, when the disease is controlled so is the rash/itching. I cannot tell you the misery and depression I went through for years. It was so bad that I could not sleep, rubbeed off my eyebrows, lost most of my hair, have terrible scarring and on and on and on. There is an antihistimine called Atarax that i tried and had relief but decided against it long term as it put me to sleep. Literally. I took one pill and would sleep for three days.

    • Wow Becki!

      As a natter if fact, prednisone is one of the first medications many of us “lupies” get on. It is great for a short term but the long term is definitely hard. However, if the alternative is feeling lousy, take the prednisone. I personally get this itchiness when I take certain medications or if I go out into the sun for very long unprotected. Of course there are times when I can find no link to anything for the itching. It appears to have a mind of its own! Can you explain more about Dermatomyositis for me? I try to share whatever I can with others because I believe knowledge is power.

      Thanks for sharing with me. I appreciate it so much!

      Jen

  8. Ash

    I also have the itching, followed by hives and swollen bumps all over my body. This past week I began Benlysta, my first infusion was Friday. Saturday I still itched a little bit, but some of it had gone away. Some of the hives had turned into a grey color (i wonder if the benlysta was killing the hives and they then turn grey)?
    One thing that I have found to be excellent when dealing with the itching externally is Dermaplast.

  9. Margaret

    After 27 years with Lupus I still have no answers. The only thing that I know works is a treatment called “Body Stress Release” . It has changed my life in so many ways that I decided to go study fulltime at the age of 44 and become a practitioner myself. I am playing with the idea that it has to do with the nerve pathways. Although some meds defnitely makes it worse it does not go away even when I have been wheened myself off meds for long periods. Dont you feel like ants has invaded somehow? After a Release I have a few days of peace and quite.

  10. christine p weiss

    I am waiting for my Dr to call back as we speak.He put me on hydroxyzine hcl 25 mg for the intense itching on my arms and back,mostly my whole arm from my shoulders to my hands.This is not working right now as the itching is the worst its ever been. I can only describe it as if someone had chicken pox but it was underneath your skin,no rash either.Ive been researching this and found that sometimes it is a begining of a flare and sometimes prednisone helps.At this point im ready to try anything.what was helping me before this was neurontin(gabapentin)…I had been prescribed it for my past shingles. But I needed something stronger.I really feel for anyone with lupus itching,as I call it. And no the Drs dont seem to realyl know what to do.

  11. I just recently found out that I have lupus. So glad to know that this infernal itching I’ve been having on and off for years is not me going insane!! I sometimes wake up and look like I’ve been clawed, and have no idea what happened! I know I must look like a drug addict sometime, randomly scratching at something that’s not there. It seems to be mostly my scalp and the corners of my eyes that itch. Especially my eyes. Thanks for posting this, and filling in one more piece of the puzzle for me. <3

    • Yes, I understand. I itch on my arms and legs, like restless leg but not. I just started using a cortisone spray and it is helping me. The itching comes and goes and when it is here, it is awful! However in between, it is fine. No rhyme or reason. Thanks for reading!
      Jen

      • donna

        2.5% hydrocortisone cream helps somewhat, but when it’s not enough, I sometimes find that an ice pack on the “un relentingly itchy” area helps it to calm down, and at least make it tolerable.

  12. Hang in there! I know what you’re talking about but I mostly get it on my hands. I do get nodules that you can actually see turn red but it doesn’t matter how much I scratch, the itch doesn’t even feel like I touched it. The good news is that hydrocortisone for the most part does calm it down – but I have a prescription strength tube. I hope it works for you!

    • Kelly

      Sorry this is a long one. I can tell you I have had itchy scalp issues since junior high. It’s an intense itch, it wakes you up at night. The only way to calm it enough is to get up and wash shampoo it. That only calms it. You think you are crazy, and alone. No one else has this issue. The intensity of actually waking up scratching you head, no one else has this. Dandruff or dermatitis maybe, but not this. Selsun blue helps but the flare ups continue. Life goes on.
      chest rashes appear and with topical steroid creams improve it but they do not resolve it. The sun it seems, becomes a serious enemy. A sun exposure turns into an itchy back rash. The scratching nearly causes a secondary infection. All the physician can say is contact dermatitis, (seriously the only answer when medical professionals have no idea what to tell you) Life goes on. More Rx creams are given and some relief is there but deep down you know this is not normal. Then you see the dermatologist. Keep up the topical steroids and tells you the small bumps on your index finger are just callouses and don’t worry, you don’t and life goes on. But when those bumps jump fingers and appear to be over knuckles on your hands, that feeling down deep is now up front and center. Nothing on the interney fits my hand bumps. Finally, a trip to a second dermatologist,after many months of itchy rashes, says Dermatomyositis is supected and a biopsy of gottrons papules (;exactly what my hands look like) is done. The diagnosis of cutaneous ( skin) lupus is given but it still could be dermatomyositis( without muscle involvement) although my biceps and shoulders are sore since bumps showed up in February. It’s Hard to distinguish them from each other in biopsies and blood work. Life does not go on. It halts, becomes serious and complicated. This is my story so far. Three weeks ago I went to the second dermatologist thinking I must be allergic to something. Prepared with lists of soaps, foods I eat, even products at work..her face dropped when she saw my hands.
      For years it was just an itchy scalp, now in my late thirties it’s so much more. Im relieved to know this is what I have and I’m not crazy. The meds are Prednisone and anti malarial. It could be so much worse I know. Reading this blog has helped me to know I’m not alone…thank you. Eucerin calming creme, and eucerin oil do help, dove soap and oatmeal baths help, alternating selsun blue and neutrogena t-gel also helps..for scalp. You can’t let up or back off moisturizing you skin..esp if you are in a flare up. Don’t be afraid to see a dermatologist and or a rheumatologist. That’s what I have to offer so far. Will check back as I start the meds:)

      • Hi Kelly!

        I actually began this lupus journey with these crazy little blisters on my fingers that would itch like the dickens until they burst. They would go away and then appear again. The scalp issues I can relate to as well. Always seems like I have an itch at some place on my body at all times. I do wake up but go back to sleep. The rash on my chest and neck, I use cortisone cream on it. I use moisturizers regularly for my whole body. If I could, I would dip my body each time I bathe, because itching is going to appear somewhere.

        I am back on prednisone right now for costochondritis but it also brings out my malar rash and blisters in my mouth and then it gets rid of them. Dunno why but it is what it is.

        Thanks for commenting. Jump right in and join the discussions! I am so glad to meet another of us lupies! Hate that we all have it but glad we can share and support each other! Jen

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