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Skin Sarcoidosis

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sean39332
sean39332

Hi, new to the forum. I am 50 years old and was diagnosed with Sarcoidosis of the skin about 6 months ago (and later confirmed in lungs). My face (and upper torso) are covered in unsightly red lumps, and are slowly increasing in numbers. Was given oxytetracycline originally..no effect and now for about 3 mths been on Hydoxychloroquine (apparently a malaria drug) for its anti inflammatory effects, absoluteley no effect on lumps. Has anyone taken any other medication for skin sarcoid and had improvements? lungs not bothering me too much fortunately. N.B. I also suffer from Addisons disease (28yrs), another autoimmune disease, been told no connection? Thanks

1 like, 15 replies

15 Replies

  • Nickademus
    Nickademus sean39332

    Posted

    Hi Sean

    I dont have Sarcoid in my skin. I do have sarcoid spots on my legs but they are different (so Im told). My colleague has skin Sarcoid and I was chatting to my consultant about this. She told me that Skin Sarcoid is different to the 'regular' sarcoid as its slow developer. She also said that it is usually linked with another illness. This makes sense with your Addisons and it also being auto immune. I was told that last year.

    The Hydroxychloroquine is a tablet given for rheumotoid athritis and helps the joints and also the inflammation. I like to know the details so ask the consultants millions of questions

    Im not sure if this helps 

    Regards

    Nicola

    • sean39332
      sean39332 Nickademus

      Posted

      Hi Nicola,

      Many thanks for your reply. Slow developer is so right, noticed half dozen red lumps (nodules) on chest about 12 mths ago, more and more developed gradually, now have about 20 on face/neck and loads on trunk, few others on arms and legs. They look a bit like boils but without a head. Dermatologist first suspected tumors, so the diagnosis about 5 mths ago was sort of a reult. Confirmed to have nodules in lungs too, but so far no ill effects (got another appt with Respiratory doc in Apr), There must be a link with Addison's, surely this is not coincidence, have asked but doc unaware of any link (think I need to question this). Got another appt with Dermatologist end Mar, asking for other treatment. Can I expect respiratory probs, or is it luck of the draw? Had eyes checked, they ok. Again many thanks

    • Nickademus
      Nickademus sean39332

      Posted

      Im no Dr but 1  Auto Immune x 1 Auto Immune + Auto Immune. Ive just googled it and found this article in the Oxford Meical Journey. This is the website, but the paragraph you may be interested in says:

      Adrenal glands

      Involvement of the adrenal glands rarely occurs in sarcoidosis. The functional status of the adrenal gland in patients with sarcoidosis has nearly always been normal when evaluated after stimulation with exogenous ACTH, with the exception of patients with secondary adrenal failure due to hypothalamic-pituitary infiltration by sarcoid granulomas.41 When there is sarcoid involvement, the adrenal gland is replaced by dense fibrosis, leading to adrenal insufficiency, but patients respond well to glucocorticoid and mineralocorticoid replacement. However, sarcoidosis of the adrenal gland has also been described as leading to an adrenal crisis67 and death.69 Both caseating and non-caseating epithelioid granulomas have been reported at autopsy in patients with coexisting sarcoidosis and tuberculosis. Finally, the association between sarcoidosis and Addison’s disease is unusual, but when it occurs it is likely to be as a result of autoimmunity.

      web: http://qjmed.oxfordjournals.org/content/96/8/553

      I had eryethema nodosum in my legs all the way around. I had panniculitis, cellulitis and steptacocchus which all burnt my legs. However the erethema were a purplish red that were hard and spread. I had to draw around them to watch how big they got. One would go down and another part would first go hard then discolour.

      I have had a 'rash' of about 20-30 spots around my ankles on both legs, They are red, small and go hard. the are the size of my small finger nail.day in day out they are greyish, purple spots. When Im unwell, the spots turn much more red, go hard and swell up. They dont particularly itch. Ive been told they are sarcoid spots and reflect the sarcoid spots in my lungs. How true that is I have no idea. I just know the spots are very unsightly - to me anyway

      Nicola 

    • Nickademus
      Nickademus sean39332

      Posted

      Ill try a 3rd time to post this. Ive copied some info and put a link to another website and they are moderating me. Nothing awful. I looked up the Oxford Journal of Medicine and the title Endocrine and reproductive manifestations of Sarcoidosis. Run down to Adrenal glands and it talks about the unlikely but possible links between Sarcoid and Addisions. Hope you can find it

      Nicola

    • Nickademus
      Nickademus

      Posted

      ive had erythema in both legs. they start off hard, then colour up to a blueish purple and they increase. I had to draw around each one I go every day as they spread and can identify new ones. they become quite largeThey reduce and disappear with the treatment for Eryethema.

      I have sarcoid spots on both my legs. they have been there 2 years. they are a greyish purple colour about the size of my small fingernail. 20-30 on each leg. When im unwell they swell and go hard but dont spread and change to red. Im told they reflect the sarcoid spots in my lungs but im not sure how true that is

    • sean39332
      sean39332 Nickademus

      Posted

      Hi Nicola, thanks for the link, fascinating! Its marvellous that I am finding more out from this forum than from my dermatologist. Addison's definitely linked! My spots do sometimes seem 'angrier' or more tender at times, particularly the ones on my face. They are purple/red and vary in size upto about the fingernail size you mention. I am gradually also getting more, without any going away. Do the ones in your lungs cause you any illness/problems, I am just ever so slightly wheezy but had normal lung function when tested 3 mths ago. Thanks for the discussion
    • Nickademus
      Nickademus sean39332

      Posted

      Keep a note of how you feel when they flare up or die down. I know when Im going down hill when they become red and angry. My lungs are very affected.Lung functions arent normal. somethings improve and some remain the same. I wheeze  and breathe very heavily most of the time.

      I watched an episode of embarrassing bodies where a woman had Sarcoid in her face. It was quite unsightly. They referred her to a NHS clinic where she got free treatment. Creams to camouflauge it and taught her how to apply it. It had really affected her self esteem and he had stopped going out. Gave her a new lease of life. im not saying rush out and get some make up, this was different. If its affecting your confidence and you are conscious of it all the time, maybe something like that could help. As a man, you may think im not wearing makeup. But it was different to that

      My ereythema spots started small and spread to 5-6 inches across

      I think youre going to give your consultant a run for his money with all your research!!!

      I think its better if we can make informed decisions aboout our health and be the one in control

    • Nickademus
      Nickademus sean39332

      Posted

      my sarcoid spots have increased in number when it flares up but they dont go away. My ereythema nodosum where much bigger, about 5-6 inches across in the end. My sarcoid is in my lymph nodes and lungs so yes i sound like i smoke 80 a day and a heavy breather !!!!

      I saw a programme about people going to to the Dr on a street clinic with conditions they wont go to GP about - but they will go on national TV - dont get that. I tried to name the programme but it moderated my post. Anyway the lady struggled with it being so unsightly on her face and it stopped her from doing things, low self esteem etc. She was referred on NHS to a clinic who provide and teach you to apply a type of camoflauge make up and it transformed her mental state and her face. Nobody would know. Now as a man you may think i dont want to wear make up. It was different to that. Yes its a type of make up but a very different aspect. If you are conscious of it and you are constantly aware of it and other peoples reactions - which can make anyone feel bad, maybe its worth asking about a referral or for some support. As for the dermatologist  well mine knew less than me and I didnt know much!

      All the best and let us know how you get on

      Regards

      Nicola

    • sean39332
      sean39332 Nickademus

      Posted

      Hi Nicola,

      Thanks, Yeah, very conscious of what people might think they are and I do look a state, it's getting me down. Will let you know how I get on at my next appt in two weeks. Good luck and many thanks

      Sean

  • tangles
    tangles sean39332

    Posted

    Hi Sean

    Sarcoid is a known trigger for Erythema Nodosum usually found in the legs.

    This may or indeed my not be the condition you are suffering from but might be worth looking into with your doctors. I have the issue with my legs.

    I quote from the experts.

     

    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.

     

     

     

     

    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.

    Regards

    Tangles

     

    • sean39332
      sean39332 tangles

      Posted

      Thanks Tangles,

      Taking this info to Dermatologist at my next appt (end Mar). I already take oral cortisone for Addisons, will aks about this and Colchicine. My face and torso are worst, could be chronic as your explanation suggests.

      Will let you know how I get on. How long you had on legs, been told this can often 'burn out' in 2-5 years. So far treatment having no effect. Thanks again

  • Newton
    Newton sean39332

    Posted

    Hi Sean

    You need to see a good dermatologist. I found a good article at http://dermnetnz.org/dermal-infiltrative/sarcoidosis.html which I hope will give you some pointers. That article (very respected website) says that steroid creams are sometimes used, and mentions a couple of other treatments

    Good lcuk, Newton

    • sean39332
      sean39332 Newton

      Posted

      Hi Newton, what a great website. I am seeing a dermotologist, but following initial diagnosis by the senior dermatologist, seem to have seen a less experienced doc on the last 2 occasions, great. Got appt end March, will ask about the other treatments. Fed up, look a state, but a least no other ill effects...so far. Thanks for your reply. Do you suffer the same condition?
  • bert73173
    bert73173 sean39332

    Posted

    Sean,

    My wife started with skin disease on her face with Sarcoidosis.  She went to a skin specialist who did not know what to do about it because he didn't know the disease.  She went on Hydroxychloroquine for several months.  It took her at least 6 to 9 months for them to reside. 

    Sarcoidosis tend to flare up over time and manifest itself in mysterious ways.  when present, it is in every cell in your body and so it is present in your lungs but not manifesting itself right now.  Folow the advice of a good Pulmonologist who knows Sarcoid.  He or she will be able to help you with the skin problems.  Yes, there are frequently other problems but there is no connection with Addisons. 

    Irritable Bowel seems to be a common connection people have. 

    wishing you the very best outcome

    • sean39332
      sean39332 bert73173

      Posted

      Hi Bert, 

      Thanks for your reply, I been on Hydroxychloroquine about 3 months now and was hoping to see results, maybe it needs more time. Yeah I tend to agree that the dermatologist I last seen seemed lacking in expertise on this subject. I will see what dermatologist says at end March but looks like I may get more success from the respiratory specialist at my appt in April (first appt with him). Thanks again, let you know how I get on.

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