Trekkitaylor12 years ago

Hi Walls, My Father had Sarcoidosis and sounds very similar symptoms. You didn't say how long your Husband has had it. My father was on same Steroids for 10 yrs and then it went into remission, Unfortunately my Brother also suffers from it it, though he has different symptoms to our father. We found a lot of help on the American teaching medical websites. You may find them helpful. Staying out of the sun is very important, something to do with Vitamin D.

sadie2812 years ago

Hi Walls, I have sarcoidosis of lungs and PF. It was discovered 13 yrs ago by accident so they couldn't say how long I've had it. I was symptom free and didn't give it a minutes thought except for regular check ups. Started struggling and got breathless 7/ 8 years ago and then rapidly went downhill over last 5yrs. I didn't get any treatment until 2008 when I changed hospital to the Royal Brompton. got more tests done with them in 1 day than I'd had in the 7 years with my other hospital. I was Put on steroids and also had three lots of IV methyl pred over this period. I was also put on methotrexate last year and early this year they added hydroxychloroqiune. I have been on O2 for 2 years. Mine doesnt seem to going into remission thats why they are adding in different meds but i believe most cases do so I hope I haven't worried you. I have also had a chronic cough for 6 years and I have tried most things but up to now docs haven't found anything to stop or at least lessen it. I don't know where your husband is treated but the RB is excellent, they specialise in sarcoidosis and you only have to ask to be referred. BLF have information on sarcoidosis and you can also find info on Royal Brompton website.Trekkitaylor is right about Vit D, I think people with sarc make too much and the sun can cause sarc to flare up. Also hace to be careful with calcium

walls12 years ago

thanks for the replys. we have been having a tough time, health wise. We are in Worcestershire, so are quite way from the Royal Brompton unfortunately. Hubby was offered some drugs trial, but we chose not to take them, as there did not seem to be any advise with the pills, they were given as more of a take these, and see what happens as we have no clue.

Hubby has had sarcoidosis since 2001, and it does not seem to change at all. we have tried varying the prednisolone dose, taking very high doses for a long time and stepping them down, and tried taking nothing, then very high doses when it flares up. we are at a loss though now as to what to do. the local gp is useless, and the hospital are not much better.

wish there was a cure i hate seeing him suffer like this

Hidden12 years ago

Hi

I have sarcoidosis and I am also a member of this website sila.org.uk

Its specifically for sarcoidosis sufferers and they can provide excellent advice.

I am in remission at the moment and feeling pretty good although its likely I will need a transplant given the damage its already done to my lungs. I am still on a low dose of pred and azapriothine but I'm feeling ok at the moment.

I haven't been referred to RB but I suppose I am lucky that my GP and consultant are excellent.

Marie

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