Confirmation of Sarcoidosis

[Heather270240]

I have Giant Cell Arteritis (in remission) and Polycythemia. I am taking Prednisone and Hydroxycarbamide. However over the past 18 months I have developed breathing problems. CT scan shows inflammation, red blotches on my skin, severe aching joints and fatigue and many other unexplained symptoms. GP considers me a mystery patient. I saw a respiratory consultant several months ago who said I had all the signs of Sarcoidosis but I was too old. I am 79. I have read the literature about Sarcoidosis and I agree it does state it's mainly younger people who get it but it also includes older people as well. Can anyone help me please. I feel quite ill with all the symptoms and can find no one to listen.

[bsooner]

I’m 60 so we probably had it when we were younger and it went dormant for awhile. Your symptoms sound like mine and lots of other sarcoidosis patients. I had to go to a few Dr.s to get help. A rheumatologist and a pulmonologist are the people I see for the sarcoidosis. I have taken placquinal for the past 3 months and it seems to be helping with the fatigue. Still have the aching joints and have trouble walking a block without having to stop along the way. I understand your frustration. Keep going to Dr.s until you find on who will listen. Facebook has several groups where I have gotten a lot of good advise and people that are going through the same or worse. I’m sorry you are feeling so bad. I hope you find some relief soon.

[Heather270240 in reply to bsooner]

Hi bsooner. Many thanks for your reply. How did you get yours diagnosed. I'm in Maidstone Kent and both GP and hospital seem clueless about it.

[bsooner in reply to Heather270240]

I had ovarian cancer a couple of years ago. Before I had the operation for that they saw something on my lungs. They went in and did a biopsy of my lung lymph node and from that determined I had sarcoidosis. I live in the U.S.A. in Oklahoma. My GP then suggested a pulmonologist. She said it was no longer active in my lungs but I did have damage to my lungs. Last year after I had a CT they found it on my spleen. Then I was referred to the rheumatologist. The first one I visited was clueless. I asked for another referral and am now going to a knowledgeable nice young Dr. We don’t have it all figured out yet but at least she listens to me and is trying to find out how to help me feel better.

[Libertylane in reply to bsooner]

I also live in KOCO. (Yukon). In the process of figuring out if I have gca. Have rheumatologist appt tomorrow. Would like to know who you use for rheumatology if that’s okay. Took first dose of prednisone today from primary care dr just in case

[Thomac]

Hi the Royal Brompton is a sarcoid specialist hospital perhaps you could get a referral there.

[Heather270240 in reply to Thomac]

I have just asked my Haematology nurse and she thought it doubtful as there was still a big question mark as to whether I have Sarcoidosis!!

[Dolphin14 in reply to Heather270240]

They really need to do a biopsy to rule in or out.

Age shouldn't matter. You need treatment if you have it. As someone else said it can reoccur at any time. You may have had it and didn't know it.

[Heather270240 in reply to Dolphin14]

I am in a difficult situation re medication as I believe Prednisolone is normally prescribed. However as I have Giant Cell Arteritis and am on a reducing dose of prednisone my Sarcoidosis symptoms are getting worse. Not sure where to go now. What medication do you take. When it's really bad I take codeine. Many thanks for responding.

[Dolphin14 in reply to Heather270240]

My husband had cardiac sarcoidosis.

He also had evidence of sarcoidosis scarring in his lungs and spleen.

Treated with prednisone.

[Thomac]

My husband also takes methotrexate for his sarc.

[Heather270240]

Unfortunately I am unable to take Methotrexate because of my other meds. 6mg of prednisone and hydroxycarbamide for my blood cancer. Many thanks for your reply