Flare up

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after 3 months of being ill I was finally diagnosed with sarcoidosis, my consultant doesn't want to put me on steroids and thinks the condition for the moment has burnt itself out, as I now feel much better and back to my normal self 

Can anyone advise what they do when they have a flare up, how they manage "it" the 3 months I was ill was not pleasant and I don't want to go through that again I am reluctant to start on steroids as they come with there own problems

is there a pattern to flare ups ? does anything trigger a flare up? can I control / manage a flare up,? How often can I expect a flare up ? 

Any advice appreciated thank you Ellie

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  • Posted

    Dear Ellie

    With the greatest respect and Im not dimishing what you have been through, br glad youve only felt unwell for 3 months. For some of us its years. If the consultant doesnt recommend steroids, go with that. Ive been off them for 3 months after a 2 year stint on them and im starting to feel normal what ever that is. Foggy brain for a start. My friend hadnt seen me fora month and commented how different i looked, my hair has become shiny and has life, my face shape is changing, im losing the moon face and she said I seem much more alert. So dont go there if you dont have to

    Flare ups - sometimes they happen, some times they dont. there doesnt seem a pattern for me. They are worse if im run down or the fatigue gets bad. I just sleep when they happen. The issue with Sarcoid it has a mind of its own and occurs differently in everyone. Many of us have discussed this and its important to have a life not let it rule your life. I wont pretend its easy but it does easier to manage. 

    It sounds as though you have a mild dose. 2 of my colleagues have had Sarcoid. One he had it 3 months and he is right as rain, all gone away and is a long distance runner. Im exhausted at the thought. So it can go away. My other colleague has it in her face and is being tested for it going to her lungs as she has a persistent cough. Shes had it about 15/20 yearsbut apart from a skin patch and aching joints it doesnt affect her life

    Sorry there is no definitive answer. I would say drink plenty of water, healthy diet and rest when you can

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  • Posted

    sorry Ellie I posted that withoout signing off.

    I would also say be sensible, wrap up, protect yourself and dont push your limits. I hasten to add I recommend all these things because its exactly what i havent done! I would like to say its my own medical research testing what works and doesnt, but really its just stupidity on my part !

    Just remember that there are us out there that get what you are going through which is a big help

    All the best 

    Nicola

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  • Posted

    I suffered for seven months before diagnosis and had granulmas on my eyes and arm with all over body aches and fatigue. I did 7 days of prednezone and my granulmas went down and I felt good for two weeks and the symtoms came back, I am on round two.
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  • Posted

    Hi Ellie, glad you are feeling better. I hope that your sarcoid has gone away and doesnt return. It can do that sometimes, so good luck. Watch out for infections like chest infections triggering further relapses. Be sensible - if you are poorly take plenty of rest, eat well, dont exhaust yourself, cut out alcohol. Anti-inflammatories might help with aches and pains during a flare-up. Keep a symptom diary that you can discuss with your GP. Score your pain and fatigue out of 10, it will help you to judge whether you are feeling better or not and give the doctor some clues

    Best Wishes Newton

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