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 had my first rheumatologist appointment yesterday and it went very well.

Bloods done, chest xray and all my joints checked. 80mls fluid drained off my knee and a steroid injection - all in an hour it was like clockwork.

The consultant says I've definitely got a form of inflammatory arthritis and tests may show what type. He said he suspects it will be zero negative(?!) I think that's what he said

I've to start methotrexate as soon as bloods come back and he will talk to my GP about prescribing and doing fortnightly blood tests.

I was so taken aback that I didn't have to persuade him I was ill, that I forgot to ask all my questions I had planned!

He was a lovely man, he said he will change me to injections if I don't get on with the tablets. He said if I feel wiped out with side effects of those, thats not acceptable and he will use something else.

I left feeling very reassured and rather bemused that it was all so easy and quick!

I've got an occupational health appointment on Tuesday but my secondment sadly can't extend, so if nothing else I'll be looking at redeployment. Which I'd be devastated about because I've worked so hard. I'm going to have to take some time off sick I think, moving has been impossible today!

So glad it went well and they listened and gave you a good plan! I had the MTX tablets and soon switched to injection which is much better.

I'm on hydroxychloroquine, 200mg pd, I'm not due the 5 year eye check until next year but I pay for advanced eye checks myself & have the Amsler chart. I tolerate it pretty well, no side effects so far. I have more energy on it. @Orchid887 Sorry to hear you are having such a bad time. Could biologics possibly be an option for you if methotrexate fails? @Loafbeginsat60 Great news and you are finally getting answers and treatment.

@CherryRipe1- Hopefully yes, when I saw them the other day I had multiple swollen joints. So they've upped the MTX. Nurse call in 6 weeks to check in and seeing the consultant in 3 months, to give it a chance to work, where they'll discuss biologics if there hasn't been significant improvement on 17.5mg. My consultant has retired and apparently the replacement is a specialist in PSA so that'll be handy.

Ah that's good! Methotrexate is cheap and the rheumatologists will give this first but if it fails or causes liver damage, will move onto the more costlier biologic drugs. All the best with getting the PSA under control.

Sorry, only just seen your post, yes I’m on HRT.

I used to have a very good GP (retired now, sadly for me) who started me when I requested it in peri-menopause. I’ve since had a hysterectomy (TH BSO) and remain on oestrogen gel and plan to stay on it for a long time, as necessary.

Joining the thread for a bit of a moan and to see if anyone can suggest anything. I have ankylosing spondylitis. Don’t have the gene but diagnosed after MRI found inflammatory changes in my SI joint. I have an aggravated pudendal nerve which no one has ever been able to say is related to the AS and which was undiagnosed for years until I went to a private pelvic health physio. She thought she could cure me of the burning pain I have had when sitting (since 2020). She has helped, I now take 20mg amytriptyline which turns down the pain during the day. I also use tens machine on the nerve and she treated me with electro accupuncture. I do yoga three times a week (Apple fitness) and try to also stretch like she told me. Despite this, my hips always feel stiff and the bloody nerve won’t calm down.

I’m in a flare just now. Can’t sleep because it hurts to turn over. My knee has also decided to hurt on stairs. I’m so fed up of the relentless battle against pain. I was doing strength training using 3kg dumbbells but think that’s what knackered the knee.

I tried adulimibab for three months. Made no difference. Now not on anything except the amytriptyline. Was on etoricoxib for a while too, also didn’t help.

Mainly I’m just whinging to people who might understand!

I have AS. A combination of sulfasalazine, leflunamide, methotrexate and etoricoxob over the last few years mean my last MRI showed no inflammation yay! However, still have issues with knees, ankles , toes and hands... 😞 And the damage done pre diagnosis means I need both my hips replaced...

Leflunamide and methotrexate both worked well for me in combination with sulfasalazine, but I developed too many side effects eventually so had to come off them.

Have you tried any dmards?

Thanks for reply. No, they have never been suggested. I only get to the consultant once every two years if I’m lucky. There is a decent nurse specialist. I feel if the inflammation came down in the SI joint the nerve might not be compressed or aggravated. But it’s such a rare problem they don’t join the dots. The last clinic letter suggested a gynae referral. Waits for that where I live are 18months. I stupidly took myself off the list when I saw the private physio as the reason for referral was to get to nhs gynae physio. So much gatekeeping!

Hi everyone! Been following this post for a while now. Its helpful reading everyone else's journey. Im at the very early stages of my diagnosis for suspected RA. I've got my first rheumatology appointment tomorrow morning and my anxiety is the worst it's ever been. Im just so nervous about being fobbed off at my appointment. I've read some awful horror stories both here and elsewhere.

Im hoping it's going to be straightforward tomorrow as my bloods do make it almost certain it's RA. Just really hoping I get a decent consultant. Very nervous because im off on holiday next week abroad so dont really want to start any meds until I come back but also I dont want to be in pain while on holiday.

Can anyone share any positive stories of their first rheumatology appointments to put my mind at ease?

Hi @KarateSchnitzel and welcome! I was diagnosed in September 24, very straightforward. I had a phone appointment with my gp and she agreed it sounded like RA. I'd left it waaaaaaaaaay to long to get help, in hindsight. Then I had blood tests, and was positive for rheumatoid factor. Then I was given an urgent referral to the rheumatology department, to the early arthritis team, told ot should be 2 weeks ish but maybe a bit more as busy. Anyway, it took about 8 months as I've now learnt rheumatologist are rare as hens' teeth!

On the day, I was weighed and had my BP taken by a hca. Then I saw the rheumatologist, she asked loads of questions, took a very thorough history an looked at hands, feet, knees,elbows -my worst joints. She said straightaway that it was RA and that she'd recommend starting methotrexate ASAP. On same day I had loads of blood tests, a chest xray and maybe some more xrays? And was told that I'd need more scans etc.

Zero fobbing!
Ask me anything specific that you want, if you want.

It was suggested that I had steroids to tide me over until the meth kicked in, but I have a medical complication that made that trickier. Often people have a steroid dose at first appointment I think, to get their symptoms under control.

Aw thanks so much for responding. Your story does seem really positive. Im hoping they will give me steroids to tide me over because the pain is so random. My hands are sore all the time now, all day. And then I'll get a random flare up in another body part. There is absolutely no way to predict what im going to be like so it makes it really difficult to plan ahead. I would love to be able to just go on holiday and relax not in pain. I really dont want to start methotrexate until I get back. I wouldn't want to have any horrible side effects while abroad.

Did your dr give you time to consider options re: long term med? Also, did you have a course of steroids tablets or an injection?

How are you doing now? Have the meds helped? Thanks again!

Sorry just read that back and it seems you didn't have the steroids, might have misunderstood that point

Thought I'd share my experience here while you want for Zebra to respond.

I had my initial appointment with the consultant and much the same happened, lots of bloods, some xrays and a general chat which lasted a while.

I was offered a steroid injection at the follow up appointment while I waited for treatment to kick in. They were really good and also zero fobbing so imagine you'll be fine. I was also given the chance to think about drugs if I wanted. I was so sore that I didn't think and just did! I hope it goes well tomorrow!

They've recently increased my methotrexate and I told them I wouldn't be taking it until I was back from a holiday and that was totally fine.

Good luck!

This is so good to read. Thank you so much! You have both really made me feel so much better about tomorrow. Fingers crossed my appointment goes as smoothly as yours. Im sure it will, im an overthinker and generally anxious anyway so doesn't take much to tip me over the edge. Hope the increased meds work for you and your feeling much better

Sorry! Quoted the wrong post, im still getting used to the new app. My previous post was in response to @Orchid887

I just had to get something checked out with endocrinology before I started steroids (tablets) due to another issue. That took MONTHS so actually the methotrexate had kicked in well before I was finally told it was OK for me to take the steroids! I've since had a steroid injection in elbow too.

Honestly the methotrexate changed my life. It kicked in about 4 weeks in, or that's when I noticed it anyway. I could suddenly do stairs like an adult,t instead of a shuffle or a toddler 2 feet on each stair thing. I stopped dropping things (ish).

That's positive to hear about methotrexate. @TheSpottedZebra
So quick update, had my appointment and it was a really positive experience. My Dr was lovely. He said he knew it was RA based on my bloods. He examined me and said I could take either hydroxychloroquine or methotrexate. He recommended methotrexate because of how high my blood results were and how inflamed my joints are. I was given a steroid injection in my bum and I'll get another appointment in about a month to start my meds when my full blood results come back. All in all, a really smooth postive experience. Hopefully the steroid injection means I can enjoy my holiday. Thanks to all who responded, you really did help with my anxiety last night.

Well, sorry that you do have RA but excellent that it was a positive experience this morning !
Hope the steroids kick in soon and you're feeling the benefits for your holiday.

And then hope that the methotrexate works for you too!

@KarateSchnitzel The steroid injection is called Kenalog. I had one four weeks ago. They are quite effective short term, you'll probably notice a difference in a day or two. Mine seems to have worn off now. It also cures hayfever, albeit temporarily.
I think steroids are the devil's drug because they work so well, have an analgesic effect as well as calming inflammation and give you an all round sense of wellbeing but you can't take too much or for too long. The tablets are difficult to stop and bad for your bones.
Don't forget to tell your travel insurance as they have a ton of questions about RA.

@Boopethanks for the info. My injection was actually depo medrol but both seem to be very similar. With a bit of luck I'll only need that one but who knows, there's so many variables with RA/AI. Very good point about travel insurance, thank you.

@Orchid887

How are you feeling now? You popped into my head this evening so I thought I'd ask

Thank you for thinking of me! I am okay thank you, still struggling but work seems to have taken a turn for the better with a new (better!) Job and I had a lovely steroid supported holiday with my daughter so feeling a little more positive. Though I don't seem to be able to start this higher dose. I've had chest infection after D&V bug after fever for weeks. But hopefully this is the week!! How are you doing?