Hi I've just been diagnosed with sarcoidosis
Posted , 12 users are following.
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??
0 likes, 24 replies
Newton sharon83239
Posted
Hi Sharon
Most docs dont know very much about sarcoidosis. And every person you talk to has a different experience - that's why it's sometimes called the 'snowflake' disease as each one is different. With luck you will find a rheumatologist who has some experience with it.
The chest clinic are good at the lungs but dont known what to do with the aches and pains, fatigue, chest pain, sleep disturbance, dry eyes, and all the other weird stuff that sometimes happens. Steroids generally make you feel better quickly, but then need weaning down over a long time. A few people dont get on with them. I found they made me very short-tempered and I was constantly hoovering (which I never usually do!). I was lucky and got back to work pretty quickly but had to reduce my days for some months.
I get flare-ups of symptoms if I get a chest infection, that's my pattern. I gave up caffeine and alcohol and that helped palpitations, but ended up with a leaky heart valve which seems pretty common on these pages.
Here's hoping that you feel better quickly. Welcome to our team
Newton
sharon83239 Newton
Posted
Hi thank you, it does help to know what other people go through and not just how you feel in yourself, sometimes its hard for me to know weather my flare ups are to do with my fibromyalgia or sarcoidosis, I still havnt been told by the doctor what stage of sarcoidosis I've got? I don't see the respiratory doctor till April, glad your feeling better thanks again for your message x
kimberly55282 sharon83239
Posted
If you can get a second opinion just to have a better Dr. It would probably be worth it. I am still learning about all of this myself and found myself here as well.many drs it's about the money but I been told there are ones out there that are sympathetic though I am still looking.I am still going through test myself and find drs. Dint take you seriously with this. I have even looked up where some of the best sarcoidoses treatment place are. I found Cleveland and new jersey...Google it. If I can't get the money to travel there I am considering it. Clevland will do consults through emails with your test all being sent to them.
gail_24648 sharon83239
Posted
mamotho_39729 sharon83239
Posted
I was diagnosed with sarcoidosis in 2013 January. I have been on steroids since that time to date. My neurologist has started to taper them off from last month. I have suffered non life threatening side effects. I was already on anti hypertensive drugs. I started treating myself like a diabetic patient as steroids predisposes one to diabetes. I have joint pains and just use rubbing stuff. I do blood tests every 6 months to check my liver function and other tests. Hope this will help.