F2F with rheumatologist

Had a f2f with rheumatologist last week . Really thorough appt. Gave me a steroid injection to get me through my dads funeral. Both agreed things continue to be very active . He said he wanted to go over my history and get back in touch after another blood test.

Letter received this morning. New diagnosis of spondyloarthritis . Medication to be changed to adilamumabab (?) Bloods showing inflammation for the first time ESR 63 CRP 26 and worryingly platelets 529. 5 years on still on a rollercoaster ride. Oh well onwards and more research on yet another inflammatory arthritis. Think I could be an expert on inflammatory arthritis the way I’m going .

[Mmrr]

Sounds like a good appointment, interesting that you have a new diagnosis of spondylarthritits, on what criteria was your diagnosis changed ? I hope your new med arrives and starts to have positive effect soon, great you were listened too and taken seriously.

[Hidden in reply to Mmrr]

My hands and feet are always swollen and painful. When I was diagnosed with calcification of my Achilles and continued heel pain his questioning changed. I have mentioned in the past about shoulder pain . Shoulder pain has got much worse . It radiates into my head / neck,under my shoulder blade, across collar bone into my triceps/biceps and breast . Elbow painful and tendons running from the elbow into wrist and fingers. When I walk I get buttock and pelvic pain that radiates to the outer hips into my thighs. I have lower back stiffness and my lower back often goes. Only realised all this after his questioning. All these inflammatory arthritis diseases seem to over lap. Don’t know what’s what .

I’m having a scan on my shoulder on Monday will be interesting to here the results.

I see your having new problems too.

Did you make it to your mothers ?

[Mmrr in reply to Hidden]

Thanks for that. I have big back problems, enthesitis, shoulder pain and my ankles are swelling, the pattern of my socks was imprinted on my skin last night.I've been saying for a long time now, I believe that I have a spondlyarthropody of some type.

Going to mums tomorrow for two nights.

[Hidden in reply to Mmrr]

Your symptoms sound very similar to mine . Hope your new rheumatologist listens to you.

Deep breathing required while at your mums,

.. sorry just realised you posted about wheezing. Good luck 🤞

[Blodynhaul in reply to Mmrr]

Very sorry to hear of your problems too Mmrr. I've been off here for a while. Hope things can get sorted and work better for you. Take care x

[Marionfromhappydays in reply to Hidden]

OMG this could literally be me writing this, such similar symptoms.

I had a back and pelvis MRI year or two ago and was told it rules out spondylopothy and I guess you can't argue with a MRI but I have such similar symptoms .

[Mmrr in reply to Marionfromhappydays]

But not all spondlyarthropodies are picked up on MRIs. Sacroilitis is difficult to see on MRI too. Not always acknowledged by rheumatologists.

[Hidden in reply to Marionfromhappydays]

My mri for my ankle was reported incorrectly. I pushed to see a rheumatoid physio who scanned me . Torn Achilles and calcification made my rheumatologist take a different route with his questions. If you think you have it keep questioning and listing symptoms. It’s taken me 5 years x

[Dobcross1]

Really hope the new medication works - you really have been through it since the original diagnosis. Thinking of you, stay strong 💪 x

[Boxerlady]

It sounds like he took your issues seriously so let's hope that the new medication works - and quickly. Hope that the funeral went/goes as well as these things ever can 💐

[Hidden in reply to Boxerlady]

Thanks . The funeral went well but very very hot.

Both I and my rheumatologist are a little hesitant with this medication as I had a lot of problems with etanercept another TnF but you gotta try .x

[Deeb1764 in reply to Hidden]

Try being the operative word in this. Everything about this disease is trying............x

[Boxerlady]

It must have been even more trying during the heatwave 😰Hopefully it's reassuring that he's aware of possible issues and is thinking carefully about what to prescribe and discussing it with you rather than thoughtlessly throwing stuff at you.

I'll keep everything crossed on your behalf - let us know how you get on 🤞😘

[Marionfromhappydays]

Good luck with your new medication, your rheumatologist sounds nice.

Glad the funeral went ok, that must have been very stressful on you though x

[Biofreak]

Hi J. Sorry to hear about your Dad. You've had one hell of a time for sure. I've been on Humira(Adalimumab) in the past and was effective for me for a while at least, I hope it works for you. I have a lot of buttock and lower back pain but I think mine is a direct result of the sacral fracture after the fall I had last November. I have only recently started physio for my back so things have improved a bit but early days yet. I can't do half the things I used to do and find I have to sit down more often. Quite often this disease morphs into other issues as we go along. Anyway I am glad you have found a rheumatologist who listens and hopefully the new medication will help. You deserve a break after everything xxxx

[barbieg]

I’m so pleased to read you had such a thorough appointment with your new Rheumatologist. It makes such a difference. Hope the new medication works well for you too.

[Monkeysmum]

Well done on getting through your Dad’s funeral, I’m sending big hugs your way. I hope the rest of your family are all doing Ok.

Interesting that your bloods are showing inflammation for the first time, although perhaps not surprising you are flaring badly given the last couple of months you have had. Did the rheumatologist take away your previous inflammatory arthritis diagnoses or are you collecting the full set? 😜.

Seriously though, I’ll be keeping everything crossed that a change in medication brings better results if it is more suited to your new diagnosis. 🤗

[oldtimer2]

That's was a very useful appointment and it's good to hear. Adalumimab (Imraldi in my case) has been life changing for me.

This since the change in the NICE guidelines after years and years of pain and swollen joints, but never quite reaching the inflammation levels technically for eligibility until last year.

[Gnarli]

I'm so pleased that you had an appointment where you were listened to, had a proper consideration of the issues and a treatment plan put in place. Result! Like yourself I will be starting Adalimumab (Amgevita) as soon as it is delivered and the nurse has trained me on it's use. It's been a rotten three months of pain, swelling and misery for me so 🤞Adalimumab will do the trick for us both.

[Blodynhaul]

Very sorry to hear of your problems, though sounds like a bit of plan and way forward - hoping it works. Hang on in there. Very sorry to hear of your father x