The itching is driving me crazy!

Posted , 6 users are following.

I have lumps in my lower legs, shortness of breath (COPD) that is getting worst, even though I haven't smoked in a year. My eyes are not affected, just had them tested. I have been on leflunomide 20 mg for 2 months and lumps are going away. Doctor also put me on O2 at nighttime. My entire itches and that is driving me crazy, I take a baths only every 3 days, and have used all kinds of skin cream, nothing works. I have itches for 5 years, not allergies, that has been ruled out. Sometimes I itch worse than other times. I have also had all kinds of blood tests and the results always come back being OK.  Does anyone have any suggestions as what I can do.

0 likes, 16 replies

Report / Delete

16 Replies

  • Posted

    Hi have you tried anti-histamines for the itching? They can help with sensitivities. I have lumps on my lower legs under the skin, only appeared recently, any idea what they might be please? 
    Report / Delete Reply
    • Posted

      I do take anti-histamines daily, they don't help that much. Itching 5 years ago, then lumps in my lower legs, like I brusied myself.  I got a chest x-ray that did;t look good, then a cat scan and pet scan which showed growths in my lungs. Doctors forgot about lumps in legs and I had lung surgery, removed growth and part of my lung, not cancer. What was removed was dead tissue, and not growing. Just have had another cat scan and will know more next monday and learn the results. My advice is to keep pushing the doctors to keep testing you to find out what is going on in your body. Good luck!!
      Report / Delete Reply
  • Posted

    Hello Cherie

    1st of all you're not on your own. It's the deep itching. It burns at times and can never be satisfied. I get it all over. I was prescribed anti histemine in hospital and have taken 25mg of hydro hydroxide or something like the every day for the last 3 years. If I don't take it then the itch drives me scratch till my skin bleeds. Then my G P has stopped it because it can cause heart problems so I now have 10mg of Ciritizine every day. Again it helps alot but doesn't cure it. It is tolerable. Skin creams don't work because it's the inside where the itching penetrates to the skin whereas applying topical creams doesn't address the source. Itching is but one side effect of sarcoid I. Afraid. I'm itching just talking about it

    Hope that may help you

    Regards Nicola

    Report / Delete Reply
  • Posted

    you are looking to apply a topical remedy to the itching on the surfaceof the skin. However, certainly from my own experience, the itching comes from within. If you have an allergy or a skin issue, then you would be showing a reaction and therefore apply a topical cream or similar. I take the medication because the itching comes from inside and comes out through the skin so it is treated at source

    Lumps on your legs like bruises - have you had  erythema nodosum or panniculitis ruled out? I had both which led to my diagnosis of Sarcoid. A Doctor did tell me that when there is a problem in the lungs it shows in the lower legs as they are a pair. Whether you believe that or not is up to you, i do

    Report / Delete Reply
  • Posted

    Hi Cherie,

    I was diagnosed with Pulmunary Sarcoidosis a year ago. I have had the iching for more than a couple of years. I do break out in a rash both my legs and neck.I find that at times my whole body is itchy. My GP prescribed a cortisone cream that helps with the rash but the itch never seems to go away. I have found if you can keep from scratching it does help a bit if I scratch it just makes it worse. Not sure if this helps other than letting you know that you are not alone. I find reading others coments really helps me to realize I am not loosing my mind, this is all normal for Sarcoidosis. Just keep say to yourself " And this too will one day pass".


    Report / Delete Reply
  • Posted

    Hi Cherie

    I have had exactly the same issues. Why do I say issues? Because there are two seperate issues her.

    Issue one...itches. I use a cream known as Urederm which stops the itch that will otherwise send you insane. I use it daily and have done so for twenty years or so. It is economical and solves the problem. Sold over the counter no need for a script. Untill today I did not relate it to sarcoid, so I learnt something today.

    Issue two...lumps. Erythema Nodosum

    Erythema nodosum is a type of skin inflammation that is located in a part of the fatty layer of skin. Erythema nodosum results in reddish, painful, tender lumps most commonly located in the front of the legs below the knees. The tender lumps, or nodules, of erythema nodosum range in size from a dime to a quarter. They may be inflamed off and on for a period of weeks, then shrink and become flat, leaving a bruised appearance. 

    Erythema nodosum can go away on its own in three to six weeks. After it's gone, it may leave only a temporary bruised appearance or a chronic indentation in the skin where the fatty layer has been injured.

    Chronic erythema nodosum is a condition in which lesions pop up elsewhere, for a period of weeks to months.  However, chronic erythema nodosum that may last for years is another pattern. Chronic erythema nodosum, with intermittent recurrences, can occur with or without an underlying disease present.

    What causes erythema nodosum?

    Erythema nodosum may occur as an isolated condition or in association with other conditions. Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases (Crohn's disease and ulcerative colitis), and normal pregnancy.

    I did not understand what was happening to me when this happened to me. Now I have a better understanding. I still do not know how to treat this issue. If anyone knows please let us all know!!!





    How is erythema nodosum diagnosed?

    The doctor would first do a physical exam of the rash. However, a biopsy is usually required to confirm a diagnosis of erythema nodosum.


    How is erythema nodosum treated?

    Erythema nodosum is initially managed by identifying and treating any underlying condition, along with the skin lesions.

    Treatments for erythema nodosum include anti-inflammatory drugs, and cortisone by mouth or injection. Colchicine is sometime used effectively to reduce inflammation. Treatment must be customized for the particular patient and conditions present. It is important to note that erythema nodosum, while annoying and often painful, does not threaten internal organs and the long-term outlook is generally very good.


    Report / Delete Reply
    • Posted

      Thanks so much for info on Urederm to help stop the itching.  Erythema nodosum has been mention to be, but no definitive diagnosis has been made. A recent CT scan shows that a small growth in my lungs is changing, getting bigger, but can't really tell from 6 months ago. That is because the 1st CT was done with contrast, and 2nd wasn't. Doctors dont want to repeat CT because of radiation concerns. In the mean time lumps and sweeling that has occured since last March is getting better. I think because I have just completed by month on Lefunomide 20mg daily. I had lots of various size lumps in both lower legs. Now no lumps in one leg and only a small lump in the other. I am O2 at night and don't know if that is a result of my COPD or some type of auto immunite  problem, I am not taking Vit. D any longer as I read that and the sun are not good for me. 
      Report / Delete Reply
  • Posted

    OK, was diagnosised with lung cancer in March, did the chemo/radiation treatments. Had ct and pet scans and now no cancer shows. I am very thankful, lots of prayers from friends. Still have problems with O2 level being low. I am still itching. I am just waiting for the next hammer to fall, doctors can't figure me out, HELP!

    Report / Delete Reply
  • Posted

    Hi Cherie

    I am going to tell you something you will find hard to believe.

    When I was diagnosed with sarcoid my brother had some similar symptoms. He did not believe when I told him. He got so sick he got some tests done to shut me up.

    Yes he had as well.

    After many years we compared notes.

    We found one interesting thing after our recovery...we both drank emorous amounts of coffee during our worst phase of the illness. When nothing was working and all seemed lost.

    Doctors said they have no idea of coffee helping but also found it very interesting.

    Might help then again it might not???



    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up