Sarcoidosis

Hi, my names John, I've recently been diagnosed with sarcoidosis after many blood tests, chest X-ray, ct scan, and finally a mediastinotomy, (lymph node biopsy). I've been put on prednisolone for 3 months, starting with a high dose of 40mg reducing by 5mg a week down to 10mg. People told me after a couple of days I'll notice a difference with the joint pains, and breathing, been on them over a week now and no change. Am I expecting too much?

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  • Hello bigrobbo

    Sorry l have no experience of this, but one of the other members will be able to help.

    This forum is a weath of information, advice, and support.

    Welcome.

    Velvet x

  • Hi bigrobbo and welcome. I care for hubby Pete who has had sarcoidosis for 25 years. Everyone is different and it can take quite a long time for any improvement to become noticeable. Please do make sure you have a bone density scan as steroids affect the bone density. Pete has osteoporosis because we had not realised until too late.

    Speak to your doctor or respiratory nurse if you have one about any concerns. Are you under a Consultant anywhere?

    BLF have a good leaflet on Sarc so send for that and speak to one of their wonderful nurses if you can after Easter. Just click on the red balloon where it says British Lung Foundation for info.

    Good luck to you and hope things improve soon.

    Happy Easter xxxx

  • That brilliant advice sassy59 as always happy Easter x

  • Thanks Titchy and Happy Easter to you. Xxx 

  • Hi bigrobbo sorry don't know much about it, just wanted to welcome you to the site and say that some others will come along who may help you more as sassy59 has 

    Take care Peg xxx

  • Hello   I am 72 and have had sarcoidosis of the lungs for 37 years and am still going strong.   Please know that there is acute sarcoidosis which can go away in one or two years and not come back.   I have chronic sarcoidosis, but it is OK to live with!

    If you are having trouble getting to sleep because of the steroids try taking them at bedtime instead of the morning.  Several years ago I took 30mg in the mornings for 3 months  and had great difficulty in getting to sleep.   I gradually took them later each day until I was taking them at night time and had no trouble in getting to sleep. 

    If I get a cold I am told to take a week's antibiotics (from the doctor) and go back on 30mg of prednisolone for 5 days.  Your doctor/consultant should advise you about this while you are well, and perhaps give you a standby supply of antibiotics in case you get a cold.

    Another piece of advice:  it is advisable not to take vitamin D and calcium supplements if you have sarcoidosis.  There is advice about this on the web.  The Royal Brompton website, sarcoidosis/frequently asked questions page says "You should avoid taking vitamin D, as the vitamin is produced in excess by sarcoid granulomas.  Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case by case basis"

    kind regards from Christine

  • There is a wealth of knowledge in relation to sarcoidosis on the SILA website... Aimed directly at those who are sarcoidosis owners X stay strong and remain positive 😊 Catherine

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