Just diagnosed with Sarcoidosis in july/16

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So I'm newly diagnosed with Sarcoidosis haven't worked since June I'm taking prednisone not working for me I feel like I'm drowning breathless and pain in my ankles and joints how is there any kind of relief from this horrible disease???

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  • Posted

    Hi

    Yes very frustrating, im on pred not doing much for me, on gabapentin for joint pain, sleep and migraine preventative, takes a bit to get used to but think it helps..there is another drug i havent started yet but have been prescribed methotrexate but yea im waiting till i see neurologist...there are some support groups on facebook that are great and have a wealth of info, one is just for women and a few others but def very helpful..good luck!!

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  • Posted

    Don't  despair, Katlis. Although Sarc isn't curable, there are treatments which do help with the symptoms. If Pred isn't working, go back to your doctor and tell them. Don't suffer in silence! I can sympathise- it took a while to get my symptoms down to manageable levels, and even now I have flares. Saw several doctors until I found one who got it !

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    • Posted

      Only occasionally- I am theoretically retired. However, there was a time when I could barely get up in the morning. A year on Pred plus steroid and salbutamol inhalers and painkillers worked. Still on the inhalers with pain-killers as required but not living such an awful life now. I do hope you manage to find the combination which works for you, Katlis.
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    • Posted

      A bit, though theoretically retired. At one point it was difficult to get out of bed. For me, a combination of Prednisolone (for a year), Inhalers and pain-killers worked. I am still on the inhalers, and sometimes on analgesics. I do hope that you find the right combination. It's miserable when it is at its worst

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  • Posted

    Hi Katlis,

    I was diagnosed last Aug and I have been off work since Msy. I am on heavy dosage od predizon with 12 units weekly of methotrexate shots It seems to have help about 25%. Has made me a type 2 diabetic due to the steroids I am on 3-5 shots of insulin . I go to another specialist tomorrow mine is in my chest and glands esaphugus. All I am being told is that it goes stagnant, but you will always have it and the only relief is that doctors thow steroids and chemo drugs at you and hope it helps.

    Chris

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    • Posted

      Wow this sucks my is in my lymph nodes they are all enlarged around my wind pipe I'm so tired I'm also diabetic I found that out first I can't work idk if and when I could work again

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  • Posted

    With my joint joint pain I found a herbal tea from Neals Yard that contained willow was fantastic! A cup of it at night before bed would mean my joints were pain free in the morning. I use herbal medicine as I have terrible problems with conventional drugs. I'm currently investigating any connection between sarcoidosis and swelling feet and lower legs. I understand it may also be responsible for my over active bladder! Oh the joys! If your medication isn't working go back to your GP. Good luck

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    • Posted

      High dose of prednisone has given me osteonecrosis. My bones are now dying. I'm struggling more with what the meds have done to me then my Neurosarcoidosis.

      I want to try your tea. Thank you for sharing.

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    • Posted

      If you want to try herbal tea you must see a qualified herbalist which is what I did. They will want a full medical history too so be prepared for a full consultation before they are prepared to give you anything. I also told my GP so they were aware of what I was doing. I'm not having a good week thanks to high stress levels so chest pain is bad in the mornings and my feet and legs are swelling again. Let's hope the herbalist can help when I next see them. Hope you are feeling a bit better

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    • Posted

      Hi

      Thank you I will try that omg I understand about this chest pain I just was to the hospital with it they said it all my muscles in my chest wall all imflaimed from Sarcoidosis I didn't know it was going to be like this hope u feel better soon it's just horrible

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  • Posted

    Sorry to hear. Here is an FYI

    High doses of prednisone is killing my bones. It's called osteonecrosis. I am no longer taking it but it's done it's damage. I've had surgery on both my hips and it's in my knees too.

    Please go have it checked to make sure you the meds are not doing more harm.

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    • Posted

      Oh dear,,, I feel what you are saying.

      I went to Mexico and they were much more concerned about my bones. I felt pretty good when I was recieving the treatments there. But now that I'm home I hurt again. My elbows, wrists, ribs. I need to go see my Dr. But I just have a bad taste in my mouth about how he's at fault as to how bad I am. 3 strokes, my bones are dying. Worst pain ever!!!

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