Hi I've just been diagnosed with sarcoidosis

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It's come as quite a shock, and don't know what to expect, I've been doing loads of research but it's always better to speak to someone who's going through the same as you, the doctors given me steroids to treat my sarcoidosis but not sure weather to take them, what's other people's opinions of taking them and side affects?? My doctor couldn't give me the time of day to explain the condition to me he got his secretary to tell me over the phone, so don't know at what stage my sarcoidosis is. Please help??

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  • Posted

    Hi sharon

    First of all - don't panic ...I know it's easy to say but seriously it will only make your symptoms worse.

    I got dx nearly 4 years ago & I felt like my world had been turned upside down.

    I'm a mum of 2 boys & I work full time & run my husbands business. My sarc is in my lungs although I reckon it's played a part in several other complaints like itching legs , rib pain etc.

    Docs are in the main v uneducated about sarc.

    My symptoms were coughing for 6-9 months & tight chest which was awful.

    Sarc waxed & wein so if your having a spate of it you know that it will hopefully subside sooner or later.

    Everyone's experience is different but if you want my opinion you need to eat well, keep as fit as you possibly can & stay away from germs (like in the gym) .

    You have to listen to your body so if your tired just take rest etc etc.

    Ref the steroids - I've personally never taken them, the side effects can be harsh ... you should talk to your doc or another doc that actually knows about sarc before you decide but I didn't want to let them creep into my life but some people have no choice. If you are questioning whether to take them or not then I would say that you poss don't need them because if you really really needed them you would have taken them already.

    Best thing for sarc is excercise it helps stretch the lungs & increase volume - I train 3 times a week but not too much cardio & I never overdo it , if I feel tired I miss the next session - your body will tell you if you can do it or not.

    I don't know if this is helpful or not but this site helped me at first.

    Once you get over the shock & living with Sarc you will hopefully get back to doing the normal things that you always did before just maybe at a new pace that suits your body for now.

    Enjoy your life, get on with it & stay positive - x

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    • Posted

      Hi thank you for your reply, it's been very helpful, before my biopsy my doc sed he was just going to monitor me, but since having the results of the biopsy his treating me with steroids, I have a heart murmur, an I also suffer with fibromyalgia, I too get a tight chest with chest pain an pain in my ribs I get out of breath most days just goin up the stairs but I do take the dog out for a good walk everyday just to keep me active.

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  • Posted

    Hi Sharon,

    Steroids is the go to drug for Sarcoidosis for 99%

    Of all physicians. Have you seen a puliminolgist?

    My side affects turned me into a type 2 diabetic

    I have also been on 3 different types of inhalers

    Methotrexate and now on Remicad infusions.

    I see a real good Rhemotologist once a month.

    This Disease can go away with the steroids or not depends on your body. I have been sick with this for 17 months. Not a pleasant day to day way to live right now.

    Chris

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  • Posted

    Hi Sharon

    I have recently been diagnosed with sarc but took a long time to get diagnosed. Eventually when I saw a specialist he recommended steroids as it was in my lungs. I actually asked the question to see if I could avoid steroids but he said to take them to avoid damage to my lungs . He did say most patients don't need steroids . I also at some point had sarc which interfered with my heart and had a pace maker fitted. I also have had some small seizures causing blank staring also possible sarc. This disease can get everywhere, I have it in my lymph nodes. I am a positive person but have to go with the specialist in his opinion to stop further damage and take the steroids. Good luck

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    • Posted

      Hi Monica thank you for your message, my sarc is in my lungs an chest close to my heart, I have a heart murmur which is why I was concerned about taking the steroids but I spoke to my family doc an she sed to take them. But I'd of felt better if I'd of spoke to my hospital doc because his the one dealing with it?

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    • Posted

      I agree with you family doctor don't fully understand would be better from specialist. I also have had heart murmur since a child and I have mitral valve regurgitation . I have been on steroids for about 2 months and feeling a lot better, given me a new life but everyone is different. I haven't had too many side affects on 30mg.

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    • Posted

      Mines a leaking heart value for about 20years, but that's reassuring that you haven't had many side affects on the 30mg of steroids because his only put me on 20mg 4times aday thank you so much for help. X

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  • Posted

    I have sarc in my legs. I took the steroids as prescribed. I was back on my feet in days. I fear it will return but I am 5 years clear. As for long lasting effects of steroids I don't seem to have any. I think it's the only thing that works.

    Stay as well as poss.

    Terry

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    • Posted

      Hi terry sorry for the delay, thank you for your message it's a big help, I didn't know you could get it in ur legs, mine is in my chest an lungs I will try an stay positive x

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    • Posted

      Hi Terry, how did you know when you are free of this? I was told there are no tests and no cure for sarcoidosis. I have MS since 1996 and diagnosed with pulmonary sarcoid in 2010 but was told I have had it for many years. I have awful pain in my lower legs over the tibia. Wakes me up at night. Chiro told me to stretch my legs before bed but pain is still there. Also a lot of pain while up and walking. Did you legs hurt like this also? I have not done steroids except for inhaler. Not sure what else to do for the leg pain. One doctor told me to take Advil 800 mg. 3 times a day. This helps bone pain but not the tibia pain.

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  • Posted

    Hi Sharon,

    I was diagnosed with pulmonary sarcoidosis last March. Have been on steroids since. I am now down to 4mgs once daily. They have really helped and even though they are side effects I would be lost without them.

    I think you should get a second opinion or find a medical professional who knows about sarcoidosis.

    Best of Luck hope you feel better soon.

    Polly.

    PS it is best to take your steroids in the morning rather than 4 times a day. As it will definitely affect your sleep.

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    • Posted

      Hi polly thank you for your message, I thought I would be taking one 20mg tablet a day but when the chemist gave me the tablets that'd given me 5mg packets an take them 4times a day? I don't know what type of sarcoidosis or what stage, what's pulmonary sarcoidosis? What dose did thay start you on?

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    • Posted

      Hi Sharon ,

      Pulmonary sarcoidosis is sarcoidosis of the lungs. I started on 30mgs per day and I took it first thing in the morning. Taken too late and it can affect your sleep. Ask your chemist can you take 40mgs twice per day. This condition can affect your sleep as it is. You need your sleep.

      Personally, even with the side effects I would not have managed without them. I'm back at work after being out for over twelve months and being back has been really good for me mentally and socially.

      My advice, take your meds, plenty of rest and good diet and exercise.

      Feel better soon

      Polly

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    • Posted

      Hi polly thank you for your message, 12 months is a long time to be off work with sarcoidosis, I didn't realise sarcoidosis can be that bad as I'm new to this condition, today hasn't been a good day for me, as I've had a really bad head an felt sick all day? So I've put off taking my steroids today? What kind of side affects have you had on steroids? X

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    • Posted

      Hi Sharon,

      I only had a few side effects, these included fatigue, mood highs and lows which could be aggressive mood and the usual weight gain.

      You really shouldn't put off taking your steroids. It may not feel like they are helping now but give them a few weeks and hopefully their effect will have kicked in for you. You need to take them everyday and you need a specialist/consultant. Where are you living?

      Polly

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    • Posted

      Hi polly sorry for the delay, I live in great barr Birmingham, I phoned my hospital doctor today to find out exactly how to take the steroids, so now I know I will take them tomorrow, r u still on the steroids? How are you,? Since taking the steroids? Thank you so much for your help x
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    • Posted

      Hi Sharon,

      I'm on steroids since last March , started on 30mgs now down to 4mgs daily. They really did help me and if I didn't take them I don't really know what state I would be in. You should see if there are sarcoidosis specialists near you. Best of luck. Feel better soon

      Polly

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