Inflammatory Arthritis /any AI chat thread.

[TheSpottedZebra]

Hi!

Would anyone be interested in an ongoing Inflammatory Arthritis / General autoimmune chat thread?

A couple of months ago I found this board after a new RA diagnosis, as I was fretting about taking my 1st methotrexate dose. I received so much help and support from so many lovely people that I wanted a new thread where others would feel free to post too.

So here it is.

Thanks @ Alertcat. It is my own fault and I won’t do it again 😀

Another one with poor grip. Some of my fingers are locked, I couldn't make a fist to save my life. Physio used to be really good here but the seem to have outsourced it to a private company. I self referred weeks ago for hand physio and have heard nothing.

@TheSpottedZebra when you stopped the mtx did you flare straight away?
And I don't want leflunomide. Why is that? I wonder if that will be my only other option. Have you tried sulphasalazine? Will they not offer a biological?

I'm on hcq and sulphasalazine as well as mtx. I never thought the sulphasalazine did much good.

Oh and @TheSpottedZebra

Someone on the cancer thread told me this when I had breast cancer and I've remembered it ever since.
Diarrhoea Is Always Really Really Horrible Over Each Ankle.

Rheumatologist review this week. Bloods do not show inflammation (never have) so he doesn't think a referral to NHS for biologics will get accepted. Then suggested it may not be the inflammatory arthritis causing current issues and mentioned fibromyalgia.... I pointed out that given it has deteriorated since coming off the multiple dmards it probably was...

Anyone else have difficulty with no "evidence" of ongoing issues? Note my physio says problems with tendons/bones are likely inflammatory and the rheumatologist did acknowledge swelling in hands..

@jointproblems I haven't had that issue so far but it's a worry. Why did they take you off multiple DMARDs?
I did have a rheumatologist mention fibromyalgia once but fortunately I didn't get stuck with that label as I fear they just give up and blame everything on that.

I have a rheumatology appointment in a couple of weeks. I'm really struggling with methotrexate. It's working brilliantly and I've ironed out most of the side effects but the headaches are getting worse. Currently on day 7 of a continuous headache.

My concern is that when I see him I'll have no inflammation because of the mtx doing it's job. I'm on HCQ and sulphasalazine, I'd rather not be forced to try leflunomide before they consider biologic.
Does anyone know how they calculate the dsa28 score? Is it on the day or do they look back at a pattern?

Happy New year everyone. I've just had a letter from rheumatology informing me that my annual checkup in February has been put back to May 2027! 15 months away! I rang the department and was informed my consultant is away then & as the clinic is chockablock that's the soonest I can be seen, but to ring and check for cancellations! Just great eh?!

@CherryRipe1 that's dreadful. I know rheumatology is in a mess in lots of areas. I was told my consultant was more than a year behind though I don't have a specific annual checkup. Perhaps they would see you sooner if you're having problems?

Yes, I suspect COVID etc has increased the amount of people with autoimmune conditions & there's a lack of NHS rheumatologists (but probably many private ones)! I'm often in pain so nothing new really. Wanted to ask about the new drugs for my condition and trying LDN for pain but I'll probably go down the private route for LDN. Hey ho!

Oh @CherryRipe1I'm sorry, that's absolutely rubbish.

Happy new year to you all. Hopefully a lovely improvement to come for us all!

I've got my new biologics just sat in the fridge. Under strict instruction to not take it until I've spoken to the biologics nurse... who seems nowhere in sight. I did try and get out of the "teaching" session, citing my 7 rounds of IVF, 7 months on Methotrexate which is the same mechanism, and 11 years in emergency medicine as a registered practitioner who gives countless drugs.. but alas no. I have to wait.

@Orchid887Yeah, it's a pita but I'm going to keep ringing to see if I can get a cancellation. I'll ask the GP to run whatever basic Rheumatology tests they can do in the meantime. Good luck with the biologics, was your condition diagnosed in the end as I think you had suspected inflammatory arthritis or psoriatic arthritis?

I have CSU which is considered autoimmune

Its horrible - I’ve tried omalizumab, cyclosporine and now on remibrutinib which isn’t licensed that I get on compassionate access scheme

I have everything crossed for a cancellation!

Yes, I was. I'll pop my journey below!

• Sept 2024 - Saw Rheum who suspected Inflammatory Arthritis. They requested an ultrasound for 10 days later.

• Nov 2025 - Ultrasound showed active synovitis and some damage from previous inflammatory issues (hypertrophy?). The nurse called to tell me this and told me she'd discuss with the consultant.

• Jan 2025 - called Rheum after hearing nothing following this news. Turns out, my consultant had been on leave for the whole of December. Nurse invited me in for a steroid and to start Sulphasalazine due to wanting to conceive. Diagnosed with psoriatic arthritis with Rheumatoid in the background.

• Feb 2025 - Allergic reaction to sulphasalazine.(boo!). Eventually started on Methotrexate oral. Awful side effects so moved to subcutaneous injections June 2025.

• October 2025 - some relief from Methotrexate but not enough. Bloods still out and evidently swollen joints. Consultant decided to move to biologics.

• November 2025 - Admitted to hospital with chest pain and difficulties breathing. Noted plural effusion from inflammation around lungs. Consultant stated we needed to start on Adalimumab (humira)

• December 2025 - Biologics delivered but awaiting nurse contact.

Oddly I got a message from the drug company to organise my next delivery asap, despite not having taken any yet!! Going to call them tomorrow despite having a single day to write my masters assignment.

I'm aching a lot today as I did a big assessment at work. I passed!!!! But feel like I got taken out by a train in the meantime.

Well that's good that you finally got a diagnosis & biologics after trial and error. Are you still on the methotrexate & can you come off it as TTC or has it been stopped in leui of the Humira/ttc? Well done on passing your assessment & sorry you are paying the price. Hopefully the biologics will work amazingly.
I had a bit of luck, rang the appointment line this morning, spoke to a very nice lady who said unfortunately no cancellations but try later in the day. Just rang again, no, nothing (after a perfunctory keyboard tap by an impatient sounding man). Decided to ring rheumatology direct and Bingo! I got a cancellation appointment for August this year which is much better than virtually June 2027! Your good vibes worked!

Tried to edit & insert the @ but failed so above post is for @Orchid887

@TheSpottedZebra I had my first hand therapy appointment yesterday. My fine motor movements are poor and some fingers are fused. Not sure whether any improvement can be made but I'm doing the exercises.

@Orchid887 shame they're making you wait to start the biologics. It's all a bit jobsworthy.

@CherryRipe1 do you think they would see you sooner if you said there was a problem rather than just wanting a review?

I saw the rheumatologist last week. Three months on methotrexate and I have a permanent headache.
He's stopped my sulphasalazine to see if that helps. It hasn't so far. It's reached the point where I'm wondering whether the joint pain was better as at least I got some good days. He flatly refused to discuss what plan B would be if I can't tolerate the mtx. My GP can't help and anyway I don't want to get into a cycle of taking more drugs to counteract the side effects of other drugs (is there a name for that?)

@BoopeGood point, didn't think of that but worth considering for the future. I can bat out until August 26 I think. Mid 2027 was ridiculous. I think my issues are pain not from Sjogrens but fibro & it will just be pregabalin, Gabapentin or amitriptyline but going to investigate LDN privately. I think there was another pain medication, some kind of repurposed antidepressant. Sorry you are not doing too well on the mtx, I hope you manage to get on something that helps you.