Update on Leeds referral

[Coffeebeans]

Hi all

Getting used to uncertainty this year..

Had my second opinion referral with Leeds today. Super pleased I did although in for a tough few weeks again. The Doctor I spoke to had reviewed everything in detail, including PET scan result and had a potential differential diagnosis of rheumatoid arthritis and spondyloarthritis to exclude.

I'm going for genetic blood tests for RA and also an MRI of the entire spine so I need to taper quickly once again to 5mg. (Dreading this - it was horrific last time ) reasoning being that SA can look like PMR on PET scan.

I'm glad I trusted my gut - the treatments are different therefore it's crucial we get to the bottom of this and *might* explain the difficulty in tapering. We discussed methotrexate and adalimubab depending on the outcome.

Feeling a bit overwhelmed that I may have a lifelong condition as opposed to something that might burn out.

[123-go]

Oh, Coffeebeans! I'm not surprised you're overwhelmed but you will get through this. Tests and waiting for results is the pits but once you know you'll be able to deal with things with your care team supporting you all the way. The doctor who reviewed you certainly seems on the ball. Stay strong!

[Coffeebeans in reply to 123-go]

Yes you're right. I feel a bit better today and feel as though this team are very responsive - the referral to appointment only took 2 weeks.

[123-go in reply to Coffeebeans]

That's good to hear. Keep us informed.

[SheffieldJane]

I am glad you are in safe, expert hands. I am in a similar situation, it is what it is. As you say, better to have the appropriate treatment.

[Coffeebeans in reply to SheffieldJane]

Yep. One day at a time as they say.

[tangocharlie]

Who did you see?

[Coffeebeans in reply to tangocharlie]

Well, I wrote down Dr Biles but I'm pretty sure that wasn't his name now. It was a phone consult which he acknowledged wasn't perfect for a first call but he said he would get me in once this first raft of tests was in (keen to reduce visits).

[regan2]

have had no problems with methotrexate apart from periodically coming off it as my liver function tests are high.GP just rang to say to come off it as it was 115(should be about 49)

[Coffeebeans in reply to regan2]

I'm glad you've been ok on it but what do you do when you need to come of it in terms of pain relief?

[regan2 in reply to Coffeebeans]

when I've been off Meth before I have had no more pain. I am on 4mg Pred. Had PMR since Sept 2015.Last year diognosed with L.V.V of the aorta and my Rheumy put me on Meth to taper down my Pred.Luckily I have no symtoms of PMR pain (touch wood!) All the best to you.