Hi I've recently starts itching!

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Sarcoidosis in lungs for nearly 2 years & recently I've started itching! At first in legs but now it's a bit more widespread, it's super annoying. Was wandering if anyone else has had this & if it's to do with the immflamation nature if this thing?!

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13 Replies

  • Posted

    Hi Caz, I've had pulmonary sarcoidosis for many years. I experience this widespread itching: one consultant was sure the sarcoidosis caused it, others weren't so sure. What gets rid of the itching for me is the antihistamine Fexofenadine 180mg. I usually have to take two. I hope this helps.
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    • Posted

      Hi Patricia

      Thanks for your reply , it's nice to know others have had this.

      I have been prescribed the same drug but only x1 a day (by the gp) & it's not touching it. I would describe it as a prickly heat itchiness/burn.

      Started off 5 weeks ago in legs but seems to be spreading to other areas :-( it's getting me down right now.

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    • Posted

      My consultant said it's ok to take two and I find that two cause the itching to gradually fade away. He also said that, if the itching is preventing sleep, I could try piriton. Wishing you all the best.
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    • Posted

      Thanks this is good to know

      I'm seeing consult tommorrow & am hoping to discuss this. Was unsure if I'd get prescribed anti hist or anti immflams . I don't think x1 is enough to get rid of the itching. I've had it gradually get worse over 5 weeks but it's not affecting my sleep, in fact when I take my clothes off its a relief lol!

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    • Posted

      Hope the consultant is helpful

      Mind you to

      Be honest when we tell them about all the weird symptoms we get they sometimes look at us as though we have two heads

      In a nutshell only sarcoid sufferers really know what they go through

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  • Posted

    Hi

    I had so Much itching when I initially got sarcoid my main area was my scalp & forehead would scratch it to

    Pieces as though I was drawing blood but there wasn't a mark on me

    No mistreat what relief I put on it it still itched like crazy. It does eventually go away

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    • Posted

      Hi

      Thanks for your reply

      It seems common to get this with sarc but so strange there's no rash or anything

      I'd describe it as an it as a prickly heat / burn kind of itch like when u e been out in the sun ! It's so random

      But good to know it's not just me ... Sometimes this thing makes me feel like I'm going mad with the random symptoms!

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    • Posted

      Yes that's exactly how mine was as I say no trace at all that I had even scratched it. So crazy

      As you say feels like you've gone crazy especially when people see you scratching and there is nothing at all there

      Sarcoid symptoms are so bizarre I wax getting a different on every week and so unrelated most of the time

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    • Posted

      Yes so bizarre

      Can be a bit depressing tbh - I'm naturally very outgoing & confident but recently started to feel like no one gets how I feel! I feel like I'm a pain especially when I talk about it - because it's all on the inside it's a hidden thing. Starting to get depressed by this sh*tty condition lol!

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    • Posted

      yes it  depressing but i feel its more frustrating. I had a moment the other day when i shouted at my sarcoid. Got mad at it. It was just the frustration. We get how you feel but i realise the people around you dont and think youre putting it on or have no concept of how draining the pain and enegy loss is

       

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  • Posted

    Hi

    I have the itching too. It occurs in different places and its like a burning itch that goes very deep. Always in a place where I cant quite reach. No pattern to where I itch. My forehead is itching now in sympathy but it can be feet, to head and anywhere.

    When I was first diagnosed they gave me Tramadol as one of the pain killers. It was a friend who told me they caused severe itching. Yes they do and changing the medication changed that but I still have the Sarcoid itch. I take anti histermines 4 times a day for it, but still itch from time to time. I accept its one of the weirdo things we endure

    Something else im getting, cramps and spasms in my hands where i can hold things or do things. Ive read its one of the side effects of meds, but I wonder if its sarcoid too

    All the best

    Nicola

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    • Posted

      Hi there

      Just a word about itching and spasms.

      I have had an ebus to find out if I had Lymphoma.

      I have Lung fibrosis with which I am treated with Oxygen 15 hours a day.I have granulomas in the lung and lymph glands which are swollen.

      I have not been told I have sarcoidosis but on reading this and other forums i have all the symptoms .

      my legs are mostly affected with itching with no rash.Also my scalp and I have had some hair loss(being a woman this didnt go down to well)I have problems with toes going into spasms and not hands.I have skin rashes on my arms and small lumps under the skin that are not even in shape and are skin coloured not red.I have been reading your expertise on this sarcoid subject and was wondering wether I could have sarcoid.by the way I have been taking daily antihistamine which seems to calm down the itching .

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  • Posted

    Oh yes.... Drives me mad. From my head to my toes. Im Australian, this summer was so hot. Made it worse. I really do feel for you. 
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