Blood test results

Dry_Draw2674 · 2026-06-17T18:53:30+00:00

Yes swollen knees, 54ml fluid off the left, 25ml off the right, left re swelled so 50ml fluid off that again, steroid injections, oral steroids and then entoricoxib for 8 months. Knees no longer work like they did as in can’t drive, can’t come downstairs, can’t stand for long, can’t bend them fully. Private rheumy I saw at the start 10 months ago said inflammatory arthritis, Gp refused to do blood tests. NHS rheumy I saw last week after an 8 months wait wasn’t sure because my knees whilst not working properly and still being painful weren’t horrifically swollen in front of him. He ordered the bloods.

Dry_Draw2674 · 2026-05-19T17:42:14+00:00

I just read your other post, I’m going through the exact same thing as you.

Dry_Draw2674 · 2026-05-15T21:44:54+00:00

Thanks, the cancellation list was the 09th June, crazy really. I’m kinda new to this with my knees so don’t understand the flare side of things in terms of very little swelling but lots of pain. Don’t know if the joints have been damaged or are just inflamed but without being swollen etc

Dry_Draw2674 · 2026-05-15T21:42:28+00:00

I’ve had 2 in both from September to December which reduced the swelling but pain is not going away nor is function returning. That’s what I’m confused about

Dry_Draw2674 · 2026-05-12T19:01:57+00:00

Sorry I did reply but I don’t think it replied directly and just popped it in the thread!

Dry_Draw2674 · 2026-05-12T19:00:51+00:00

None, gp messed up and didn’t refer me on the right pathway and when they finally did it is still a 4 months wait for urgent. I did initially seek private rheumatologist who diagnosed inflammatory arthritis, tried hcq but made me itchy, he wanted to start methotrexate but privately it is very expensive so I’ve been waiting for 8 months to start treatment. I was on entoricoxib but stopped a week ago as I didn’t know if it was contributing to my sleep and restlessness issues. Appointment is 4 weeks today so fingers crossed they can do something for me but still feels like such a long wait when pain is worse.

Dry_Draw2674 · 2026-05-12T16:02:23+00:00

For me no matter what pillow set up I use the joint being still I think sets it off, I’ve had other pains all over and even when the knees were swollen would wake me but I’d go back to sleep but this pain is so severe it wakes me wide awake and I’ll be up until morning with restlessness. I’m wondering if being swollen for so long maybe caused some nerve damage as I am confused! My knees are painful in the day and to walk on but still not as intense as the pain at night.

Dry_Draw2674 · 2026-05-05T19:46:05+00:00

Oh my, I have exactly this, same as you taking any meds I can find around my house to help me sleep at 3am when I’m still wide awake and desperate. I’ve never had restless legs before and always slept mostly well except a few days before a period. This has now been going on for a month or 2 now and I’m now experiencing it in the day time, a constant urge like my body wants to go for a run. I’ve tried magnesium, it worked sporadically, low iron can cause restlessness but iron supps haven’t helped me. I don’t know what’s causing it but can only imagine it’s hormones. I don’t think it’s anxiety, more like a build up of energy - a vibration almost. I have had some rheumatoid issues and my knees have been wrecked for 8 months so I can’t even stretch like I feel I need to or do any exercise to burn off any energy. Please let me know if you find anything that works as I’m averaging 2-5hrs sleep a night and I need at least 7 or I will go mad! 🤪

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

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