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Sarcoidosis

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pinkdiamond
pinkdiamond

Hi I’ve just been diagnosed, it started with my arms having purple lumps on arms. I was sent to hospital for biopsy ( a lot of toing and froing before getting results) anyway came back I have sarcoidosis, I was totally shocked ( my mum had it and had to have a lung removed and was never the same again) I was sent for X-ray and bloods, blood was ok but been told I have pulmonary sarcoidosis, again totally shocked burst out crying because I knew what my mum went through and to be honest we’d never even heard of it before. My GP was looking at my arms and saying she would never have thought looking at my arms that it was sarcoidosis. I’ve to put steroid cream on arms until I suppose start going to all outpatient appointments. Any input would be greatly appreciated as I’m still new to it all.

thankyou in advance. 😥

0 likes, 21 replies

21 Replies

  • peter52775
    peter52775 pinkdiamond

    Posted

    Hi pinkidiamond, it's always a shock when people are first diagnosed even more when it's also someone else in your family, I was diagnosed first and then my brother about 5 years later, fortunately for him it stayed confined to his lungs and only flared up once.

    I didn't get off so easily, at first it was my lungs (only found out by accident after a car accident needing an x-ray to my chest after airbag hit me) , after about 8 years it started popping up all over in my body, it's now confirmed in my skin, eyes, sinus, lungs,,,, and is suspected in my bowels and brain, this is a horrible disease and sadly not many docs understand fully what it can do (I was on the stroke ward in rotherham and the head stroke nurse had never heard of it) I strongly recommend you and your mum read up as much as possible to avoid being passed about like a spare part, if you're really worried by it ask your doctor or specialist to refer you to professor athol wells at the Royal Brompton hospital in London, they are brilliant in there and probably the best in the country. Hope this helps,,,,

    • pinkdiamond
      pinkdiamond peter52775

      Posted

      Hi Peter, unfortunately my mum has died years ago but when they first discovered it they thought she had TB, but turned out to be sarcoidosis, she had her lung out hoping the other would do the job of the two but it never did. She was never without pain for the next 17yrs but she just carried on like always. Miss her so much. I was just told last week that I’ve got it I was aware of having a little wheeze and stupid little cough but never in my wildest dreams was I thinking this. You have really been through the mill with this disease, do you know how it came about also for your brother ? I live in Scotland and the Dr said to me that I will be having a lot of appointments coming my way and I will be seeing people that know about the disease,  so will wait and see.

       Thank you for replying it helps to know others are out there that can help. 

    • peter52775
      peter52775 pinkdiamond

      Posted

      Hi again, My brothers was found after months of never ending chest infections, he was put on high dose of prednisolone for about a year,

      I wasn't , looking back I wish I had been, I might not be so bad now .

      I was thinking back last night and I first noticed the rash on| my ankle way back in 2000 after my foot was squashed at work, the skin went red and purple straight away and it never went away, I now have the same rash on both feet, both shins, my chest and face and it's damned itchy at times, my joints hurt a lot and its always worse when the rash flares up and in cold weather ( as you can imagine I'm loving the weather right now,,,,,, not).

    • pinkdiamond
      pinkdiamond peter52775

      Posted

      Aw Peter that’s bad, I. Hope your flare passes quickly. Snow here is bad ❄️☃️ And it’s cold. 
  • camey03589
    camey03589 pinkdiamond

    Posted

    Bless you! I take Remicade and methotrexate and in the beginning 18 months massive prednisone therapy. Pravigil for the skin itch. I also do acupuncture that helps. Please keep in touch. Are you in the US?
    • camey03589
      camey03589

      Posted

      It is a shock! On top of the sarcoidosis I did test positive for latent TB and took Rifampin it almost killed me.
    • pinkdiamond
      pinkdiamond camey03589

      Posted

      Hi, I’m hoping I don’t have to go down the steroid root, I was just saying I think my body is pretty strong nothing coming my way and to be told this rocked me, I think I’m still in denial if that’s the right way to put it. I feel I’m going to wake up and it’s a dream 😴 I’m maybe making to much of it but all I know about it is that it ruined my mums life ( health wise) she battled every day as she didn’t give into her illness. She still worked looked after her family and to be honest we were all selfish because as long as she was with us we never really saw her illness beating her. 😢😢

      I live in Scotland UK 

      Thank you for replying 👋🏻

    • camey03589
      camey03589 pinkdiamond

      Posted

      Don’t beat yourself up, sounds like your mum was a great lady! I too hide my pain and then when I’m not feeling well and I’m short on patience my husband seems to be the first to forget I battle a chronic disease. Take care of yourself the stress from the past is not your friend. Share what you need to,I have met no one that is judgmental with me we are all in the same boat and need all the help, friendships and comfort we can muster. You have every right to be in shock and denial. I’m here you you need me. God bless His sarcoid children.
    • pinkdiamond
      pinkdiamond camey03589

      Posted

      Good evening, I’m just home,I go to my sister in laws on a Wednesday, and the snow is really bad here 😱 we had to leave our car at bottom of the rd in our village, but tucked up in bed now with Tammy still on my head, thank you for getting back and love your saying that stress from my past is not my friend, this is so true. I’m meant to be going to my GP tomorrow but it’s looking unlikely, with snow. I got a letter from Dr telling me I think that I’ve to go for a CT and they will give me the results 🤔 because she already told me 🙄 so I don’t know if she’s covering her back or what, so I’m left scratching my head. I will just wait and see what happens nothing else for it. Thank you once again I do appreciate it. 

    • camey03589
      camey03589 pinkdiamond

      Posted

      I would love to be in snow! I’m in central Texas we had a couple of cold days but air conditioning is back on in the 70’s but humid! Please let me know what you find out. But remember with a compromised immune system all stress will not help you so avoid what you can and literally try not to sweat, my husband says, as a retired 👮 find your comfortable chair (in your mind) and do whatever you can to stay in it. I’m very spiritual, so knowing God wants me here; works for me. However, whatever works for you water aerobics and Yoga work well and easy on the joints.

    • pinkdiamond
      pinkdiamond camey03589

      Posted

      Hi Camey03589, I was just wondering if there was any way we could chat of this forum ( only if you wanted too) 🤔??????

  • jason22723
    jason22723 pinkdiamond

    Posted

    Hello Pink Diamond. I was diagnosed with sarcoidosis about five years ago. It was in my lungs and I was about to be placed on a lung donor list.  I took high dose steroids and my condition has improved in my lungs. However it has moved to my joints now but I manage fairly well. I do cryotherapy and acupuncture and  it helps quite a bit. Predizone seems to help quite a bit especially the rashes.

    I hope all goes well. Having this disease isn’t fun but it doesn’t have to be disabilatating.

    • pinkdiamond
      pinkdiamond jason22723

      Posted

      Hi Jason, thank you for getting back to me I really appreciate it, my Dr told me on Thursday that it’s pulmonary sarcoidosis and I’ve just seen a letter from my Dr saying the respiratory clinic are arranging a ct of my chest and will see me in their clinic with results. I’m wondering about this now as she told me on Thursday the results. I’m wondering if maybe she shouldn’t have told me yet, maybe it was clinics place to say, but it’s out now. 

                 Thanks again.

    • camey03589
      camey03589 pinkdiamond

      Posted

      Just as Peter said, each person is different, the disease is dibilitating at times for me. But I do what I must and get up again. Again in agreement with Peter short term prednisone therapy does help just don’t let your Doctor make it long term because then when you have a flare you have no where to go.
  • camey03589
    camey03589 pinkdiamond

    Posted

    I had Endocrinologist appointment they have confirmed nodules in’s my thyroid, but to me worse than that  it is included my sinus, I can breathe so I’m looking looking a surgery! Yuck!
    • peter52775
      peter52775 camey03589

      Posted

      Hi camey, you my deep sympathy with your sinus, I'v had it there about 2years now and it's awful, at it's worst it's kept me house bound for weeks on end.

      From not being able to go out because of serious nose bleeds which often required hospital attention to the embarrassing things which I had to cough up there and then or choke my self, I have taken these things to hospital for analysis and the lady on reception looked at me and asked where it came from and then looked a bit green when I told her, it was quite large and horrible to look at, I hope you don't get it as bad as I did,,,

    • camey03589
      camey03589 peter52775

      Posted

      Did they roto rooter you sinus cavity? That’s what they are wanting me to do? I had it done in 2009 already but then they didn’t know what it was they said it was just polyps 
    • peter52775
      peter52775 camey03589

      Posted

      Yes they did but likewise they didn't know what to look for then, I'v had up my nose or down my throat, the most exciting thing for me was the camera, the doc took his time and explained everything to me.

      It all started to make sense of where a chest infection stops and where sinus infection starts, it was an eye opener to see where the huge things that I was coughing up daily where growing from

    • camey03589
      camey03589 peter52775

      Posted

      I’m dreading it but I am not a mouth breather, then you get dry mouth and your teeth and gums get infected it’s a constant battle to stay healthy.
    • peter52775
      peter52775 camey03589

      Posted

      It doesn't hurt at all, it's just a tad unnerving as he walks towards you with something about a and a half long and you know it's going up your nose lol, really though it's nothing to worry about,,, please could you look at my new discussion I'v started. I'm almost at my wits end

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