What do I have? Wish I could find out!

In September I thought I had a bug bite on my right ankle. By October this rash was all over my body from my neck down. Itching was so very intense. It kept me up at night, would bleed from scratching. I thought at first perhaps it was an allergic reaction to soap, shampoo, food. I tried very over the counter thing you can imagine. Finally got into my dermatologist and he said eczema. Over the course of 4 months he tried topical steroids as well as steroid pills. I requested a blood work up which came back normal other than I was anemic. He said it was not a contact rash but was coming internally. He suggested I see my primary physician which I did. She looked at the rash and also all of my joints and noticed swelling and tenderness. She requested a full blood work up and it had a positive ANA. My Sedimentation Rate, Wintrobe and Corrected Sedimentation Rate were both high, I was anemic and my Iron was low. There were other things that were off like my C-Reactive Protein was high as well as Absolute Reticulocyte Count. I don't really know what all of that means but she brought up Lupus and scheduled me with a Rheumatologist.

I had my appointment last Friday. He asked if the rash ever got on my face, which it does not - I know I've read the butterfly rash but I do not have that. He did some hums and I don't knows. I told him that my fathers sister has Lupus. He said it can run in families but not necessarily. He sent me down for more blood work. He did not reschedule an appointment. He said I would get a call on the blood work results. I'm so frustrated. If this comes back clean, I'll be happy but it is now July and I still have this rash all over my body. Does any one else have this type of reaction??

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16 Replies

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  • Hi Beckyheth

    After I was diagnosed, I had a rash that covered my back, legs and was spreading around my trunk. It looked like tiny pinpricks and the itching nearly drove me insane. Like you I made myself bleed. This happened after I was diagnosed and after my malar rash had begun to fade and the tumid rash had gone completely. It lasted about 4Months. My GP gave me antihistamines which had no effect whatsoever. I had been on hydroxy for approx 3 months. My dermatologist said it was lupus related and told me 'you never know what lupus is going to throw at you!. I had steroid cream and Balneum ointment which helped. I think that in the end the hydroxy levels built up and did the job for me.

    You have my sympathy!

  • Thank you. I feel like I'm alone....I hear my husband saying quit scratching all the time. I wish I could. I blamed the feeling so tired on lack of sleep. Some nights I would have to take an oatmeal bath at 2:00 am just to get relief. The dr. did give me medicine to help me sleep and that has helped. I just wondered if this could be related to Lupus. My primary physician said my auto-immune system was going crazy and was over active and was attacking my skin. The specialist acted like he had never seen something like this. Kind of made me feel like I was wasting his time. I didn't leave there feeling happy or any more knowledgeable then when I walked in.

  • Hi yes that's how I started with the rash, I even thought I was allergic to water as it got far worse when I showered, I controlled mine by using 2% hydrocortisone cream and double base gel and shower gel and staying out of the sun. I do have a diagnosis of lupus and I do very occasionally get the rash on my face but with me I seem to get the rashes on the parts of my body that haven't been in the sun, so say I had my arms bare ( use factor 50 sunscreen) then the rash comes up on my thighs! I know it's definitely sun related because it does it every time I go in the sun it itches like mad and bruises as well but goes after a few days these days touch wood but I do literally slather the double base on like my Dr recommended! Hope this helps good luck with the blood results x

  • Thank you! I find that areas that have clothing touching really are a problem....what I mean is, like my waist band on pants, or my bra, and socks are awful. My legs itch like crazy and swell and bleed - I know they are bleeding because of me scratching...endless cycle. I use the hydrocorisone cream as you mention and yes the heat does make it worse. I live in Oklahoma and the temps in the summer here are 90's if not hotter.

  • If it is where your clothing rubs you may be reacting to detergent or fabric softener residue in your clothes. I absolutely cannot use Tide or I have this reaction. Try using Dreft which is laundry detergent for sensitive infants and put your clothes thru an extra rinse. Be careful with extra rinse for bed sheets as well.

    Lupus flares trigger an overactive reaction to normal things you are allergic to. Try eliminating potential allergens like perfume of any kind, harsh soaps, cigarette smoke. It could also be food allergies too.

    try to stay cool. Lower your thermostat and totally stay out of the sun. Run a fan near your bed at night to keep a cool breeze on your skin.

    Note that itching can be a sign of low thyroid or kidney issues which is common in lupus patients if lupus attacks the thyroid/kidneys so have Dr. Test your thyroid levels and get a urinalysis. A rheumatologist will order those tests if lupus is suspected. You must be seeing a rheumatologist if you have lupus.

    A full body rash could also be Lyme's disease which one gets from a tick bite. Have you been tested for that since this was triggered by a bug bite?

  • When the rash was all over my body from the neck down I also suspected laundry detergent. I switched to hypo allergenic everything...soap, shampoo, laundry, etc as well as re-washing all clothing, bedding and towels. It did not help. When I went to the dermatologist I suggested allergy testing but he said it was not necessary. He said this was not a contact rash or a food allergy but was coming from the inside. My father has thyroid problems and I also had heard it could cause a rash so requested a blood test. It came back normal. I feel like I've tried and suggested everything and finding out nothing! I have not talked to anyone about Lyme's disease but if this last blood test that the rheumatologist did comes back clear I will be talking to my GP about that.

    Thank you for your advise.

  • Hello beckyheth,

    How miserable and frustrating for you. Funny enough, I posted here last night to vent about the intense stinging/itching I get every evening. But I have no rash of any sort (I have a strongly positive ANA and a diagnosis of UCTD).

    One thing I'm sure you will appreciate is that because lupus and other systemic auto-immune disorders can affect any and every part of the body and its functioning, you are guaranteed to find people here who will have experienced practically any symptom you care to name! That can be very helpful, of course, but it doesn't necessarily mean that you have the same diagnosis as they do. You'll also find that nearly everyone here finds themselves in a struggle with medics over diagnosis, treatment, etc etc etc at some time or another. So you are definitely not alone in that!

    The lupusuk leaflets on the "Home" page of this site are quite helpful. This is the one about hair and skin lupusuk.org.uk/wp-content/u...

    Hope you find a way through soon. Keep us updated anyway x

  • Thank you so much for your kind words. I think sometimes just knowing I'm not alone in this struggle helps. I do appreciate your help.

  • You are so right, beckyheth. My condition developed over just a few months, I had to give up work within a very short time and quickly found myself practically housebound (I should reassure you that not many people seem to experience such a rapid deterioration!!). For the first few months after diagnosis, I felt completely lost and isolated. Finding this site has been a lifesaver! So I really mean it when I say, "Keep in touch" :)

  • Hi beckyheth.

    Sorry to hear you are having terrible problems with your itchy skin. I can totally sympathise with you.

    I have a similar situation to yours

    in that, I don't have the malar rash, but have had what I/and GP thought were 'bug bites' for 9 months without any success in them healing up. Turned into horrendous open wounds without any sign of disappearing any time soon! They were on my legs, abdomen arms and fingers. I have had many other symptoms to accompany these itchy lesions and extreme fatigue for a long time - with many visits to GP only to be told I have anxiety and stress!! It was only after keeping a photographic diary and presenting to a 'locum' GP was I immediately referred to a rheumatologist! She mentioned 'Type111 hypersensitivity' 😳

    Had to 'Google' when home. 🙆🏼

    FF to the present and after consultation with rheumatologist and dermatologist - up to now diagnosis being, perhaps Lupus or MCTD or Vasculitis. Was prescribed Elecon steroid cream for skin problems. It seems to be doing the trick. My current diagnosis still in limbo as awaiting appt for rheumatologist to confirm dermatologists findings.

    And, strangely enough, the itchiness is around my waistband, top of socks, bra where the rubbery bits are to prevent it 'riding up' and so it goes!

    Seems to me there is definitely some hypersensitivity going on in your body.

    I hope you get some relief soon and a little further with a diagnosis. 🤞🏻x

  • Thank you! Yes, it sounds very similar to what I'm dealing with....the part you mentioned on the waistband, top of socks, and bra area are spot on. Also, the socks cause my legs to swell more and hurt. This past winter I even had to remove my socks just to get relief. It is now summer and it is much more casual in the summer time here so I don't wear socks often to work. My legs are still swelling even without the socks. I actually go this Friday to have an echo of my heart to see if there is a relationship to my heart to the swelling. Personally, I think this is a little over kill but it's requested my by GP to rule out that problem.

    I have not heard back yet on my last blood work and probably wont until next week. I am just ready to stop itching and feel like my old self again.

  • I still sometimes have to wear socks now as my toes feel cold and numb....even In the warm weather.

    Don't worry about the 'overkill' - I am sure you are right - however, good that someone feels it necessary to rule out any other causes!

    Do hope your 'old self' returns very soon. x 👍🏻

  • Hi beckyheth,

    I'm sorry to hear that you are having difficulty getting an explanation for your symptoms and a suitable treatment plan. Did the steroids you were prescribed help with the rash at all?

    Please keep us updated with how you get on when you hear the results from the additional blood tests. If you are unsatisfied with the diagnosis and treatment plan that is set out my your rheumatologist then you can ask your GP to refer you for a second opinion.

    If you would like more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • I still have the rash, the steroids made my skin look better but did nothing to stop the itching or the rash disappearing. My dermatologist said it was not caused by something I'm in contact with or eating but coming from inside. My GP did a full blood work up and said my auto-immune system is over active, and the rheumatologist just looked puzzled and said I don't know and ordered additional blood work. Very frustrating. Thank you for your advise and support. It is appreciated.

  • Hi beckyheth, I hope they ruled out Lyme disease if you had a bug bite first then rash followed by joint pain. Is probably not that but it should be ruled out as those are also the symptoms of Lyme. The problem with lupus is that it mimics symptoms of other diseases. I hope they get to the bottom of it soon. It is frustrating not knowing what is causing these symptoms. Take care, Nan

  • Lyme disease has never been mentioned but I will mention it to my GP on my next visit. I should have my second set of blood results back by then I hope. Thank you for your reply.

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