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.

I upped it from 1x to 5x a week, but no change
(although my bleeding gums have improved quite a bit)

Happy New Year, arthritic thread friends!
Hope this year brings us all less pain, fewer flares and lots of lovely things.

Happy New Year 2025! 😊

Happy New Year to you all!

A very happy and healthy new year to everyone x

Happy new year 🥳 all .

Hi everyone! Hope you're all doing well. I got the diagnosis of psoratic arthritis today. They wanted to start me on some Methotrexate but I'm hoping to try and conceive again in the coming months so they've gone with Sulfasalazine. How have people found this? They're giving me a steroid injection Wednesday next week which I'm very pleased about, since I'm about to take my 3 year old on holiday and could do with the relief!

I have had to come off first Leflunomide and then Methotrexate as I appear to be hypersensitive / allergic to them both now, causing severe hayfever / asthma type symptoms 🙁Consultant has referred me to ENT to check nothing else is going on that needs addressing before he tries me on anything else. Not looking forward to being off the meds, but at least it will give my hair a chance to recover!

@Orchid887 I have been on Sulfasalazine for a few years now. No side effects that I really notice, helps a bit but not enough so have always had something else as well.

@jointproblems - Thank you for your reply. So sorry you're having troubles at the moment but hopefully they get to the bottom of it sharpish!

Glad to hear of little side effects, less so the fact it didn't really do the full trick. I think sulfasalazine was the only one they could prescribe that would be suitable for trying to conceive. I was planning another round of IVF this month but got a new job that I want to get sunk into first. So I've delayed it a few months. Still didn't seem worth getting onto methotrexate only to have to come off it!

I had some temporary relief using Prednisolone but no-one seems keen to use that as a long term option - though as far as I remember, it is safe when pregnant. My consultant has agreed I can use short courses sparingly if I have a flare up while they are trying to figure out what to do next. I was also prescribed a course when first diagnosed, while waiting for the new meds to kick in. That may also be an option for you.

I'm also sitting on a prescription of sulfasalazine. I've had one minor health issue after another since I've been prescribed so I've not been able to seriously consider taking it. But I am absolutely terrified to take one in case I end up like I was on methotrexate (vomiting my soul up).

I'd be interested to hear how you get on with it if you do try it. I'm slightly reassured about it being ok to conceive on, even though I'm not planning to. That makes it sound less like it's going to put me in a horrendous state.

Has anyone else found it helpful to take anti depressants to help with pain relief and inflammatory arthritis ? I was not keen to start methotrexate and a friend knew of someone who took Prozac and it helped . I am willing to give it a go as I also suffer with anxiety ( always have) so will let you know how I get on . I started last weekend but not noticed improvement so far!

Hi. Can I join in please? Just been told I have arthritis by my GP today after some blood tests and X-rays. I need to take a further blood test to determine which arthritis I have. I do have psoriasis, but the GP would like me to take another blood test. Yay! More abnormal results to look at 🎉
I’ve got naproxen for meds, but that’s it. He’s referred me for physio.

Hello @LadyGaGasPokerFace and @Orchid887, and welcome to our rubbish club!

GaGa are you being referred to a rheumatologist?
Orchid887 how was your injection? How long did you have to wait for your rheumatologist appointment?

Nope, I haven't, kerstina but I hope ot brings you relief very very soon!
Was that through GP or rheumatologist, or pain clinic?

I went to pain clinic about 15 years ago for post operative nerve pain, and they were excellent. They gave me gabapentin and a tens machine, and then helped me to taper off when I was ready. And they didn't even make me do any mindfulness stuff !

I was supposed to see the pain clinic today, but I decided against it. I really don't want to reduce the amount of painkillers I'm on and everything I could find out about that suggested that was going to be their plan.

I've only just managed to find a combination of things that means I don't have pins and needles in my hands all day every day. It was driving me insane. It took a lot of begging and back and forth with my GP to get them to take it seriously. I just can't go back to that. I can't.

Hello fellow RA sufferer here. I'm on benepali which helps a bit. I was on methotrexate inj but recently stopped these as side effects were too much. I have 2 sticks. Unfortunately I have no spleen so every time I so much as have a sniffle I have to stop these immune suppressants. I also have diabetes on insulin, osteoporosis and diverticulitis so spend my time playing chronic conditions top trumps!

Hey! It's next Wednesday sadly, so for now trundling along and avoiding the Naproxen as much as I can since it has given me some awful gastric side effects.
I was really very lucky. I called my GP mid Oct, he ordered bloods that day and I had them done at work. The following day they were all back and I was referred to the inflammatory arthritis clinic and got an appointment for two weeks later. When I saw them they ordered all the xrays, ultrasounds and further bloods for 10 days later. They then called me mid Nov with all the results, saying there was hypertrophy and degenerative changes on my ultrasound, along with synovial inflammation. So the diagnosis of psoratic arthritis looked likely. (I didn't even know I HAD psoriasis. My dad does, and I occasionally get what I thought wad eczema in my hairline. I had a tiny scalp patch which she spotted on the day)..
The wait for me was that the nurse said she'd confirm which meds to start and get back to me that week. She sent it all to my consultant who then went on leave for the whole of December... apparently she thought she'd done everything but hadn't. So it's only now that they've gotten back to me with the initial treatment plan of methotrexate which then had to be changed to Sulfasalazine for when I go forward with IVF.

All in all, if it wasn't for a month of annual leave, I'd have gone from first GP contact to diagnosis and treatment in around 5 weeks. Which I am incredibly thankful for.

Thespottedzebra it was through the GP but I do have a rheumatology appointment follow up in February. I mentioned to the GP about Prozac helping with inflammation as I had just had bloods reviewed with continued CPR levels ( if I have it right) but I was also in a state as I caught scabies off my son and after repeated permethrin applications can’t seem to shake them off . It’s literally driving me bonkers. The GP couldn’t see the tracks and thought it was improving but it isn’t .

@TheSpottedZebra not been referred to a rheumatologist yet. He referred me for physio and I will be getting some more blood tests. That’s as far as he’s got. I do have a new prescription for my psoriasis that’s flared up.

Sorry about your new diagnosis. Hopefully you will get some relief with the steroid injection. They’ve generally worked well for me.

I’ve been on sulfasalazine for years and started mtx last summer, which brought a whole new world of side effects. My rheumatologist took me off the sulfasalazine just before Christmas ( to try and exclude what was causing the issues) and I’ve been in a massive flare up ever since. I don’t think I appreciated just how beneficial it had been!

And honestly - I think it was the folic acid that was causing all the gut issues, not the mtx as I moved on from tablets to injections fairly swiftly. Looks like the next step for me might be a biologic.

@Orchid887 theres a really good uk psoriatic arthritis Facebook group with lots of knowledge people

Thank you, it's such a strange reality but I'm thankful that at 30, I'm not just "getting old"!

Sorry to hear of your flare up and side effects. I'm thankful to avoid MTX, especially with the hopes of having another child eventually. The thought of starting something, only to have to stop it fills me with dread.

Glad it's been so useful for you, and hope the biologic is the same!

Thank you! I've just joined!