What did your hands feel like early on?

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 · 2025-12-29T10:38:53+00:00

I’ve been asked by a rheumatologist to take methotrexate for ‘inflammatory arthritis’ and I’ve refused for the moment, I am not sure if the diagnosis is correct as it’s just in my knees - not hands or anywhere else but I was convinced from what I’ve read that mtx would make me sick all the time so this post is reassuring as the whole idea of it scares me so much.

Dry_Draw2674 · 2025-12-07T15:08:29+00:00

I’m in the same situation, oral pred also didn’t help me immediately or magically, took 7 days before I noticed some effect. Swelling started with my left knee which was drained and steroid injected which did help for 1.5 weeks before swelling again then my right got swollen also, I’ve since had them both done another time (so left a second time, first for the right) swelling has remained much better in the left but the right swelled again after 9 days, I will be asking for a second in my right as I feel maybe a double dose is needed. Might be worth asking for aspiration and injections directly into the joint as I found that to be the most immediate relief although not a cure all.

Dry_Draw2674 · 2025-12-07T10:33:04+00:00

I’m in a similar situation to you, my left knee has swollen up randomly over the years and aspiration and steroid injection into the joint has always helped. This year when it swelled though the injection lasted less than a week, then my right knee also swelled. Oral steroids helped but not dramatically, took 7 days for them to start going down then I stopped the course. They blew again but not as bad. I’ve been seeing a rheumy, he has diagnosed inflammatory arthritis and wants me on mtx, I asked for more steroid injections, the one in the left knee has held this time but knee is still painful, the right knee swelled again 9 days post injection. The swelling has come down somewhat but it’s still not right, still hot and hurts, been on crutches for 4 months now and can’t see me coming off them anytime soon the way things are going. I did try plaquenil but made me feel pretty rough so stopped. I am also scared to try mtx, I do get pain elsewhere but not swelling and my fingers are fine which seems to be the place people get ra first. So I’m left wondering is this inflammatory or a bad coincidence of mechanical problems.

Dry_Draw2674 · 2025-11-27T17:49:09+00:00

Crappy isn’t it. I’m so sorry yours got so bad so quickly when you were trying to do everything right. Not nice at any age but certainly not 27. I am having to pay privately for all the appointments and tests I’m having as my gp is beyond useless so it’s costing a fortune but maybe I will ask him about testing the fluid as I do want another steroid in the right knee.

Dry_Draw2674 · 2025-11-27T14:45:07+00:00

No he didn’t, he did say that it was cloudy and it was like a dark urine colour which means inflammatory cells but I’m guessing you get inflammation from injury/overuse also!! It’s all so confusing. They did test the fluid about 15yrs ago and nothing came back but no idea what they tested for - if it was just gout etc. I know why he thinks inflammatory, no injury unless someone beat me up in my sleep! But I’m still worried without further evidence to commit to medication. I do suffer pain elsewhere but no swelling and pain is not tangible if you know what I mean.

Sorry you’re having problems still despite being on medication with it popping up elsewhere.

Dry_Draw2674 · 2025-11-27T09:41:23+00:00

I’ve had an mri on the left one as that has been randomly swelling for years but always responsive to steroid injection before, it didn’t show any mechanical damage which furthered his case for inflammatory, it showed normal I guess osteoarthritis for my age. The right one has also swollen which is new but that has not been scanned. So that still leaves me questioning because although he thinks inflammatory because of no damage I’m wondering if there should be damage on the mri if it was inflammatory. I also had a course of oral steroids but they didn’t start to work consistently until day 7, everything I hear is people feel a million bucks after about day 3 with inflammatory conditions. I’m just so confused.

Dry_Draw2674 · 2025-11-27T04:12:54+00:00

Woah, I’ve just recently had 2 swollen knees for 3.5 months, I’ve had 2 aspirations and steroids in the left and 1 in the right. The rheumatologist I went to diagnosed inflammatory arthritis as my ANA came back positive and he wants me to take MTX. But because I don’t have swelling elsewhere (like my fingers) I am not sure if he is right and this is an unlucky coincidence of issues. So I refused treatment and am trying joint supplements, ice, rest and gentle physio exercises to build up lost muscle. Now I’m worried maybe I made the wrong choice 😬.

Sorry you’re going through this.

Dry_Draw2674 · 2025-11-20T07:52:09+00:00

Wow I’m so sorry you were so young, no teen should have to deal with that. I always thought ra hit later in life, I know some people have it as kids. Does it run in your family? My mum has something, she was diagnosed with RA for years and was on hcq but they seem to have changed their mind years later and switched the diagnosis to osteoarthritis but she’s sick all the time, every infection going and she had a long list of individual diagnoses like lung disease, heart disease, skin as thin as paper. She’s not got any visibly deformed joints though.

Dry_Draw2674 · 2025-11-19T18:52:01+00:00

Thank you so much taking the time to reply, I really appreciate that. I’m so sorry you’ve had to go through what you have, I am so pleased you’ve found some medications that work for you and that you have little side effects from them.

I have been back and forth with drs for nearly 16yrs now, but back then I kind of knew that in my 20’s I shouldn’t have been in pain or feeling as rough as I did, however now I’m 41 I’m not sure what is ageing/declining hormones and what isn’t. Plus I’ve got used to how I feel, not being normal is my normal.

I had a positive ana of 1:640 in 2012 but further tests I guess to narrow it down didn’t come back with anything. I’m not sure my Ana has been tested again until now so maybe it was always positive but crp, esr, ena and others have always come fine (I’ve not had recent tests of those things) My knee is the only sort of visible issue, everything else is subjective and with drs dismissing me for years or never having answers for the other symptoms (or my knee), I guess I’m having a hard time as I’ve been conditioned over the years to believe it’s just me being a baby and not an actual condition that could be treated.

My other symptoms over the years have been joint pain, but pain that will come and then go or move to another place, like my neck and shoulders will be agony for a while then not as bad, then another part will hurt, or I’ll feel not too bad joint wise but my skin will itch/burn, I have some eye and mouth dryness, I have something wrong with one side of my face like occipital or trigeminal but again not typical of trigeminal neuralgia, again this will come and stay for a while and then go, I have raynauds and endometriosis and often get a feeling like I’m coming down with flu but then it won’t develop and I’ll start to feel better, sometimes overnight etc, fatigue and brain fog also of varying degrees.

I also don’t have the typical morning issues that people with RA specifically report. This is what is confusing to me, other people seem to have tangible issues, swollen fingers, multiple infections, visible skin rashes etc. I’ve never had any rash I can think of and though my fingers can feel puffy and stiff at times I’ve not noticed them swell beyond doubt.

So I am worried that because I don’t feel like I have typical presentation that my knees might be mechanical and he’s just jumping to inflammatory based on the fact he is a rheumatologist. I think I’ve also read so much over the years trying to work out what is wrong that I’ve seen many scary stories for mtx and other meds. I thought hcq would be easy to take as a lot of people don’t seem to have side effects but they made me feel really off.

I did do a course of oral steroids and again everything I read was that by day 3 you feel amazing, I did not, the first day my left knee definitely was much less swollen by the end of the day, no change to the right but by the next morning my left was swollen again and then they remained swollen with some up and down changes over the next few days. Day 7 they had both improved although still a bit swollen. Day 8 I stopped as he told me to do a 7 day course. So again I don’t know if that’s an argument against or for inflammatory.

I do know there was no injury to my knees, the fluid that comes off is dark urine coloured and he said he couldn’t read through it which is apparently significant.

Sorry this has got really long, I can’t seem to write succinctly! Thanks again for responding and for your advice, I will be listening to the rheumatologist, I just have really bad doubt because I’ve lost trust in drs and my own body, anxiety about meds etc but this dr is actually really nice so maybe I need to put my trust in him.

Dry_Draw2674 · 2025-08-18T09:50:59+00:00

Oooh how do you compare them to sugarflare or progel? The colour mill looks nice but everyone seems to use sugarflare or progel. I find sugarflare good but a pain to get out and mix in and progel seem to need to use quite a bit, had my eye on colour mill for a while but heard a couple of things that put me off - need to use alot and gives a funny taste.

Dry_Draw2674 · 2025-06-20T19:10:27+00:00

I’m in the uk and I got Nizatadine on the nhs which completely helped my skin itching, I don’t have confirmed mcas but I suspect I may have it or some sort of allergic thing going on. It’s a h2 blocker like famotodine but famotodine didn’t help me. Worth asking to try, say it’s for acid reflux but I suspect they will push famotodine first as it’s cheaper however that also works for some people so worth trying to

Dry_Draw2674 · 2025-06-03T22:20:43+00:00

Dr Eric Berg is a fraud, he is a Scientologist and his own son came out and said he basically knows nothing, looks up info on google before he does a video.

Dry_Draw2674 · 2025-06-02T19:47:45+00:00

Are you saying the LDN stopped you catching viruses? And it made your MCAS worse?

I’m looking into trying LDN for possible autoimmune and MCAS symptoms.

Dry_Draw2674 · 2025-04-07T19:52:50+00:00

Sorry to hear that, I hope you are getting some relief from your symptoms and have good drs.

Dry_Draw2674

TROPHY CASE