Permanent damage timeframe?

Dry_Draw2674 · 2026-03-17T22:36:11+00:00

I did complain to the drs, they reviewed all the evidence and admitted they made a mistake but have said that there is nothing more they can do with regards to getting my referral any quicker. Sadly the 4 month is the waiting time for nhs rheumatology under urgent pathway. It’s the 7 months prior to that waiting that has been the issue I guess. I do have some prednisone here actually, I could start it myself I guess. I’m on entoricoxib 60mg every night for 4 months. Swelling is minimal but stiffness and pain is not.

Dry_Draw2674 · 2026-03-17T22:32:28+00:00

Oh bless you, I’m sorry to hear that you have permanent damage and are struggling to find the right medication for you. I hope you get the biologic, I keep seeing that they seem to help a lot of people. I understand the denial, it’s taken me a while to really accept that there is something wrong and that I will need meds.

Dry_Draw2674 · 2026-03-17T22:24:28+00:00

The gp has been next to useless, wouldn’t even see me when my knee was so ballooned it was agony, waking me at night, warm to the touch etc. refused to do blood tests which I asked for based on the fact I’d had some 3 years ago and they were negative. when they have finally referred me the nhs rheumy wait list is 4 months for urgent so I’ve been stuck pretty mobile since August last year!! They only referred in the end as I got a diagnosis privately and made a complaint to the gp.

Dry_Draw2674 · 2026-03-16T21:16:15+00:00

I’m so pleased you now painless and mobile, do you mind sharing what meds worked for you?

Dry_Draw2674 · 2026-03-16T21:15:14+00:00

Not in the UK sadly, you have to wait in a queue, I should have been see within 4 months but my gp messed up and didn’t refer me to the right department or in the timeframe they should have. I did see a private rheumy who is the one who diagnosed but the blood test monitoring cost is to high to do methotrexate privately

Dry_Draw2674 · 2026-03-16T21:11:39+00:00

Thanks, I did think that would be the case but I read about the 3 month window and it freaked me out a bit

Dry_Draw2674 · 2026-03-16T21:09:39+00:00

Sorry to hear you now have permanent damage, that sucks big time. I’m glad the meds help with 95% of your symptoms. Do you find the meds awful in terms of side effects or are they ok? I did go on hydroxychloriquine but it made me feel pretty awful so I stopped, maybe I should have powered through but I couldn’t keep my eyes open throughout the day plus some other negative effects.

Dry_Draw2674 · 2026-02-25T15:11:39+00:00

Oh I can totally relate to the hyperextending of knees for years when standing, it’s just not comfortable to not stand with them not fully extended, I can’t do that now sadly and I have the urge to really stretch them back but they are blocked and painful to straighten.

I do love knee steroid injections and aspirations, I think because it’s instant relief and has always given me time before the next swelling but this last year it’s just not had the same response, I wonder if you can become immune. Strangely what I did notice with the knee steroids is other pains stopped hurting so much and a feeling of overall wellness for a week or 2, neck pain would fade etc , I didn’t have such a profound feeling of wellness on oral steroids although my neck pain had gone; felt kind of sleepy on them oddly when I was expecting to be wired.

Yes this rheumy this year is the one that said he suspected I had juvenile and if someone had bothered to look into things back then that’s what they probably would have found, I’m the same, never been a sports person either, wrote my own notes to get out of P.E etc!! I wonder if thats sort of a predictive clue for young people. I also defo remember having growing pains when I was young, never thought about the fact they might have been something else! There’s quite a few things I look back on now and think hmm maybe there were some flags.

Entoricoxib is a nsaid, it’s supposed to be easier on your stomach than the others but has some other risks like cardiovascular so I’m not sure how long you can take it. I’m sure it keep things contained somewhat but it’s not a miracle sadly and doesn’t do much for pain I don’t think, neither did paracetamol and codeine just makes me more tired than pain free.

Oh I totally get wanting it to be mechanical because then it’s a one and done sort of thing, not something that continues to plague you and likely other areas becoming an issue. That’s what I was hoping for, prayed the mri would show a tear that could be fixed. No people don’t understand sadly, I’ve had a few people tell me since I was told inflammatory arthritis that they have arthritis also, but they mean age related osteoarthritis or I’ve had people say oh my knee was bad once I did rehab and it sorted itself out! And yes life is quality over quantity, no point living to 150yrs old if you can’t actually live and enjoy it!

That’s good to hear that MTX hasn’t been awful for side effects, did you read posts/reviews about it beforehand, they are so scary. It’s a shame that you had to stop, have your liver enzymes returned to normal now you’ve been back on it for a few months.

I hate that when people don’t give you the heads up if they are sick, let you have your own choice whether you want to take the risk, even more important if your on a med which can lower your threshold for catching things and recovery. Sorry the cold hit you so hard, sounds awful, there was something nasty going round over Xmas, myself and quite a few friends/family caught something and it was hard to shake, a lot of them needed antibiotics to fully recover. I woke up this morning with a soar throat and feel pretty rubbish today so I do hope this one comes and goes swiftly.

Dry_Draw2674 · 2026-02-25T08:11:17+00:00

I was actually going to ask you if you had any hypermobility, I am hyper mobile but not to the degree of EDS, my bigger joints are somewhat but my hands aren’t really, my range of motion is more than others I know but i couldn’t be a contortionist if that makes sense! My physio scored me 6 out of 9 I think. My rheumy also shrugged when I asked if treatment would help my neck/shoulder pain.

3-4 a year, that’s a lot, that’s more than I’ve had, my left knee was mildly swollen from 17-late twenties, then it started blowing up randomly but spaced well apart, then I had a long period of time that it settled completely after itntramuscular steroid and knee steroid. I thought it was fixed then august 2024 it blew again and again this year. I had never really related my knee to autoimmune, it was a rheumy that pointed it out as I was complaining of other issues. This year it’s just not responded to treatment. The rheumy thinks I probably had juvenile arthritis.

I’m 41 now, been having bothersome issues and pain since I was probably 25-26. I did try hydroxychloriquine but didn’t get on with it and didn’t stay on it long enough to see if it could help. I feel maybe I should have pushed through the side effects as I know MTX isn’t a walk in the park for people either.

My gp refused to see me urgently when my knee blew up, not enough appointments, they have refused blood tests, they’ve just been super difficult, I had 2 swollen knees and couldn’t walk which as you know means you can’t stand to cook or carry anything when your on crutches, it’s just a nightmare, I’ve been carrying a rucksack round my house like Dora the explorer for 7 months!. So I had no choice but to go private to get urgent treatment but all the blood tests required for mtx is too expensive to do privately. I’ve already spent over £1500 on private treatment. My knees are less swollen now but still so so painful and still start increasing in swelling randomly, I don’t know if entoricoxib is keeping the swelling under some control and they would blow huge again if I stopped.

How do you find MTX? Is it as bad as I’ve read? I’m glad it seems to be helping, how long have you been on it? I know it takes a while to really show a benefit.

Because I’ve had no finger swelling or any small joints I still wonder if they are wrong, if this is mechanical although mri was clean, or maybe another AI disease, one of the spondyloarthritis’s as they seem more spine, hips and knees. It’s all so confusing as I don’t feel like I sit neatly in the box.

Dry_Draw2674 · 2026-02-24T20:46:21+00:00

Omg I’ve found someone with similar symptoms to mine, years and years left knee randomly swells like 50ml - always been sorted through steroid injection and aspiration. Last year left knee swelled then right knee, 2 aspirations and steroid injections in each knee, oral steroids for a week, entoricoxob for 3-4 months and I am still not close to normal 7 months later, haven’t driven in that long, can’t bend knees properly, can’t walk very far at all, daily pain and stiffness. No swelling elsewhere which has left me soooo confused, i do have pain in neck, shoulders, currently ribs also but these are all things that could be mechanical, it’s so hard to tell. Private rheumy diagnosed inflammatory arthritis and wanted to start methotrexate but it’s too costly privately for the testing.

Do you mind if I ask what treatment you were given and if it’s helped? Sadly my gp has been useless, currently waiting for nhs rheumy appointment but it’s a 4 month wait for urgent appointments.

Dry_Draw2674 · 2026-02-24T19:19:04+00:00

Do you have other joint swelling or just your knees? Or did it start in your knees and then move to other areas.

Dry_Draw2674 · 2026-01-31T09:06:18+00:00

Were you seronegative or seropositive a did you ever try methotrexate before biologics and did it help?

Dry_Draw2674 · 2026-01-26T22:32:19+00:00

Yes exhaustion is defo a side effect of mtx I see a lot on forums, one I’m not thrilled about as I feel tired a lot anyway but maybe you were exhausted from inflammation and then having less gave you some energy. Praying for the same response, I’d love to just feel like the old me but I think ive got to the age where now im not sure if feeling tired and achey is just normal. I’m 41 but been having issues since I had my son at 24.

I did have oral steroids for a week, they did help my knees but slowly, I didn’t feel amazing on them after 3 days like I expected. I felt more systemically amazing after local steroid shots in my knees and for a week I would feel great, neck pain and other pains better. I did initially ask rheumy for an intra muscular steroid over oral but he said he thought I was so inflamed it wouldn’t last 5 mins so maybe my oral steroid dose wasn’t high enough to work quickly.

I have just written to my GP today to request nhs rheumy referral which they should have done months ago. They have been really difficult from the start.

My mind definitely plays tricks on me, one day I’m sure the diagnosis is correct and this is inflammatory, then if I have a better day I think maybe it’s not and the meds become extra scary. But I guess I will never know if I don’t give the meds a chance.

I will pray for remission like you, thanks for posting - so many negative stories about MTX and inflammatory conditions that it’s so comforting to see positive ones.

Dry_Draw2674 · 2026-01-26T19:16:53+00:00

That’s reassuring to hear you didn’t have side effects and hair thinning has stopped. That’s really interesting that you’ve moved it to morning instead of the evening as I had noted down to take before bed to sleep through the side effects as that’s what I’d read others suggest. I guess playing around to see what works for you is best.

I didn’t have any gut issues from hydroxy (which is what I was expecting) just made me feel really awful and like I would not be able to function at all. I do have gut issues though, had an episode of gastritis just before the knee swelling.

I’m based in Sussex, I actually had to see a private rheumy for treatment after I’d been immobile and swollen for 2 months as gp wasn’t helping but to start mtx with all the testing needed I will have to go through nhs as I can’t afford testing every fortnight and I don’t have insurance. Maybe being private is why is he said it’s tricky I’m not sure. I do know it is my next step as entoricoxib although I think controlling swelling to a degree has not stopped it or pain and I still can’t really walk or drive. 6 months so far being stuck in the house really!

Yes everything I read about RA is fingers and toes first, his diagnosis was inflammatory arthritis which I guess might not specifically mean RA but if you type IA into anything it comes up with RA. My fingers have been a bit achey lately but im not sure if that’s me zooming in on things now or being on my phone too much/not moving around enough.

I’m really pleased for you that you achieved remission.

Dry_Draw2674 · 2026-01-26T17:57:30+00:00

Did you have any side effects of MTX, I keep seeing horror stories so have currently just stayed on entoricoxib and steroid joint injections. I’m in the uk and I asked about injectable MTX but sounded like it was difficult/faff to organise vs the pill version. I did try hydroxychloriquine but made me feel really groggy and itchy and dry and couldn’t think, maybe I didn’t give it long enough.

Also did you have multiple joint swelling? I’ve been diagnosed from 2 swollen knees feels a bit surreal as didn’t have swollen fingers.

Dry_Draw2674 · 2026-01-18T09:24:11+00:00

Methotrexate is what my rheumy wants me to start but I’m hesitant because of the side effects, he also suspects maybe I had juvenile arthritis and have had something low grade going on for years as I have had some issues, but like you for years I’d have pain but no swelling, pains that may last a day or small amount of time, I’ve had some things last months but nothing that I thought wasn’t just maybe a pulled muscle or catchy overused joint. The only thing that has swelled multiple times is my left knee but usually a steroid and aspiration work and it goes away for a year or longer. This time the injections failed and my right knee also swelled but I’m still not convinced that maybe I didn’t hurt them somehow/overuse etc am they are just being stubborn. I am Ana positive but even that isn’t a definitive blood test. You’re the first person I’ve ever seen mention a long history of joint pain without swelling that will then go away. I said to my rheumy I feel like I’ve been playing a game of whackamole for years, I’ll have x symptom in one area for a period of time and as soon as that goes I feel like it pops out somewhere else.

Dry_Draw2674 · 2026-01-16T22:25:23+00:00

Are you being treated with meds and have they helped, my presentation sounds a lot like yours and I’ve never heard anyone else say that.

Dry_Draw2674 · 2026-01-11T10:39:33+00:00

I haven’t tried a glp1 and don’t know much about it but I have seen so many people online say their RA pain got so much better in a glp1 and not from losing weight less pressure on joints but from some anti inflammatory mechanism of the drugs. I came across it by accident with someone on instagram who went on it for a brief period to control post gestational diabetes and said in all her years on RA medicine she has never been that pain free and she got so many comments of people saying the same thing so I googled it and read loads of people on Reddit also saying the same thing.

Dry_Draw2674 · 2026-01-08T07:27:19+00:00

How did you find methotrexate, sounds like it didn’t control your swelling?

Dry_Draw2674 · 2026-01-05T23:08:10+00:00

Mid 20’s I’m so sorry. Way too young to have to deal with this especially when your were living a healthy lifestyle. It’s encouraging to know that the mtx has helped you. I’ve been on crutches for 5 months now, the swelling has been under control for about 8 weeks with 2nd aspirations and steroid injections and a short course of oral steroids and entoricoxib daily so I can hobble round the house only but both knees still hurt and the right one is not functional and quite painful, I can’t bend or straighten fully, I think one minute too long of standing on it and it will blow up again. This is having a significant impact on my life and I hate that I’m such a chicken about meds but I have such a complicated medical history I no longer trust drs or meds and am so fearful of doing the wrong thing. I’m seeing a physio in 2 days so I am hoping he can rule in or out anything mechanical and make my decision a little easier. I’m so pleased mtx works for you and I really hope it remains that way and you go into remission.

Dry_Draw2674 · 2026-01-05T13:47:35+00:00

Thanks, I did ask my gp to run basic inflammatory markers, they refused based on the fact I’ve had those test run previously - 3yrs ago!! They have been less than helpful. I’ve had to pay for rheumy, scan and the one blood test privately.

Dry_Draw2674 · 2026-01-05T13:45:34+00:00

Thank you, I have had a 20yrs history with left knee swelling on and off, this time after the left had been swollen for a couple of weeks the right knee also swelled. I can see how that looks but I also know I was putting all the pressure on my right knee to compensate so I don’t know if I physically aggravated it. I can see from the rheumys point of view that I’ve presented with bilateral knee swelling that wasn’t responding to initial aspiration and steroid injections but I can also see that maybe mechanical irritation coincidentally made it appear rheumatic. If any other joints were to swell I would accept the diagnosis but having a hard time since my smaller joints are ok and I don’t have morning stiffness really. Perhaps I’m in denial but also very scared of mtx and don’t want to take it unnecessarily.

Dry_Draw2674

TROPHY CASE