is this a sign my meds are struggling or just how it is now?

[Newbie73]

Sorry for the long message but would appreciate knowing if this is typical or if I am being a little dramatic and unrealistic.

diagnosed with RA nearly 2 years ago. Took a while but pretty much back to normal after moving to injecting 20mg MTX, 200g hydroxy and folic acid 6 days a week. Took just over a year. Able to take my 2 dogs on 5 mile walks and do the gardening etc without any repercussions. I’ve been very lucky as I still haven’t experienced the debilitating fatigue.

in the main ok, most morning I feel what I described as several of my joints are “full” they don’t look swollen or feel swollen on the outside but feel swollen on the inside if that makes sense. Finger/wrist joints are always sensitive if I squeeze them but nothing more than that. if I accidently hit my hand on something the pain is disproportionate but otherwise ok.

Happy with that. Last nurse telephone review suggested I was nearly / close to remission.

what is happening with more frequency, and it tend to be my bigger joints……Terrible pain which is stopping me sleeping, it just appears from nowhere, sometimes only for 24hrs. Sometimes longer.

so far this year I’ve had what I consider bad hip pain on both sides. One side slightly worse than the other for about 2 weeks. I ended up taking naproxen and painkillers fenbid - managed without codeine, just. My wrist joined in for the last 36 hrs then all resolved.

Last week for no reason both my shoulder socket joints felt like they were on fire. Could barely move either arm at all. Same pain in my left shoulder was one of my earliest symptoms pre diagnosis. Could not move without it hurting, a lot. It was also causing neck clavicle pain too both sides. Could barely move Friday night and yesterday.

Couldn’t sleep and had to take nsaids/painkillers including through the night which eased it a little one side, not so much the other side. It only lasted a couple of days and now I am left with a residual dull ache, but I can carry on this morning almost as normal - housecleaning etc.

I would say these outbreaks/mini flares if that’s what they are is how this all started. Am I being unrealistic that I shouldn’t be having these?

I am thinking next time this happens I should go and get my bloods done, (I only have them done every 3 months now so these mini flares are likely not showing) then ring the nurse hotline.

I am thinking I could be at the point my body is telling me the RA had adjusted to the current meds and starting to kick off/progress again. Is this similar to anyone else experience?

Thank you

[welsh12]

Obviously you need medical advice when my bigger joints particularly neck shoulders were painful and i couldn't sleep or move arms it was tenonitis. Carpel tunnel syndrome in my wrist. Didn't have hip pain. Are they OK with you taking Naproxen with your meds? Advised not too. Also found taking large doses of it made me feel worse when stopped. Good idea get blood done. I was aggravating mine with exercises so stopped that too. Is there anything you are doing with shoulders or affecting you hips running. I wish ha I used to run.

[Newbie73 in reply to welsh12]

thank you for replying.

Naproxen is on my repeat prescription meds. I try not to take too often but need to take the edge off. I also have omeprozole (also on repeat) if I take nsaids for 5 days or more. Not had to yet as pain tends to resolve itself before then.

The pains arrive all of a sudden then can disappear just as quick. I can go to bed really sore then waking up pain free sometimes. But with increasing frequency it’s staying longer but in different joints.

I don’t run, go gym etc. I can do gardening and nothing, I can take dogs on a long walk again nothing. Then just getting up from desk on a random workday and my shoulder start hurting and within a couple of hours can barely move.

As it’s resolve today no point getting bloods down tomorrow. Hopefully next one will be at home and on a weekday - see what my bloods are showing.

Thanks again

[Amnesiac3637]

Get in touch with your rheumatology team. They're the only ones who can give you advice, examine you and help you - you may be cooking something up, you may have something running alongside your RA or you may be flaring as your drugs aren’t working but whatever’s going on you'd be best to get it sorted out without delay. Best of luck and hope you feel a lot better very soon.

[Newbie73]

Thank you.

I just worry I am wasting their time and some people are far worse than I am. I will ring the nurse rheumy line and get their advice.

[Amnesiac3637 in reply to Newbie73]

Please never think that you’re wasting your team’s time! Firstly, it’s their job and secondly they would much rather see you and nip something in the bud, so to speak, than you going on getting worse, with all that that entails and having to be treated for far longer. As a retired Practice sister I would much rather have heard from my patients straight away and your rheumatology nurse will feel exactly the same!

[Boxerlady]

Please don't think that you are wasting their time - sometimes we need to push (politely 😂). Personally I would question if you are in remission even with the sensitivity of your finger joints that you mentioned. When I saw my consultant in August, my finger joints were ok but my wrist was (as usual) slightly swollen and sore and, as you've described, I told her about the pain if I accidentally hit it. She wasn't happy with that (although the fact that everything else was ok meant that my meds didn't need adjusting) so she booked me in for a joint steroid injection. Added to that the problems that you're having with your bigger joints, I think that you definitely need further investigation.

I've been hesitant about contacting the nurse helpline in the past when I've felt that things weren't "bad enough" but they've always told me that I was right to contact them.

[Newbie73 in reply to Boxerlady]

That makes me feel better. Will definitely contact then this week. I feel like I am back at the beginning when I didn’t know what it was and I didn’t know any better.

I’d don’t want to get back in that state but don’t want to raise the alarm over nothing. I am more comfortable now that I am right to be concerned and get it looked at again l.

Thank you

[Deeb1764]

I used to get terrible shoulder pain and then not be able to lift my arms would last about a week at a time. I got my GP to do X-rays and it was severe OA but also as weak it’s a point my RA attacks as well when flaring now. Worth getting looked at and GP might be quicker than consultant for X-ray mine are fab at organising them

[Newbie73]

that’s really helpful, thank you. Didn’t think about my GP. I’ll try rheumy helpline first and if no joy try gp.

Thanks

[wishbone]

I've had paiful shoulders for several years. They've gradually got worse over time and I now find it difficult enough to raise to horizontal leave alone any higher. That's until rheumy injected both shoulder joints with a steroid a month or more back, which has helped a bit. Rheumy reckon I have a lot of cartlidge missing but don't know if Osteo or RA is the cause as I've not had an x-ray. Been offered one though if I consider having shoulder replacements, which I'm not...not yet anyway.

I rarely get swollen joints even when I've been having serious flares and pain in multiple joints. I'm seropositive so there's no doubting that I have RA. I've also heard a couple of members saying that they too have little if any swelling even though their joints are very painful.

Arthritic shoulders ain't no fun that's for sure. I hope you manage to get some relief soon.

[Newbie73 in reply to wishbone]

Sounds very similar to me. From the beginning I’ve had issues with my “bigger” joints. My hands and wrists tend to join in later. But it was my hand that eventually sent me to my GP. I tried physio with my shoulders, knee and hips,

Cannot get into that state again, thank you for sharing your experience. It has really helped me.

[wishbone in reply to Newbie73]

Yes, I id think we were similar when I read your post. I've had RA for 20 years and have experienced some serious pain and deformity in a number of joints with hands and feet especially affected, but the worst and most debilitating RA pain for me has been in my shoulders. Other than occasional discomfort due to damage caused by septic arthritis in my right hip, I don't have any issues there. So that's something to be thankful for I suppose!

edit...should add that the only way to get proper relief for my shoulders was to have my RA better controlled with meds.

[Brushwork]

I would suggest you repeat the above to the Rheumatologist/nurse, whichever is your point of contact.

In my experience (27 years of RA), remission means you are pretty much pain free. Perhaps occasional breakthrough flares but these would be short lived, certainly not regular or significantly debilitating. I suspect the medication is not fully effective and maybe needs reviewing.

I have found that following a virus or vaccination, my RA flares, but then settles down again. My point being that something triggers changes if not RA being uncontrolled.

Hope you gets things resolved and into remission proper soon.

[Newbie73 in reply to Brushwork]

Thank you, I plan to reach out this morning, I do feel like I am back at the beginning. Everyone has been so kind with their time, and reassuring that my instincts are right and I likely need a review.

[Haz58]

As all the above but please check you should be taking Naproxen as well as your RA meds. It could just have not been removed from repeat after being on it before for a while. I still have Prednisolone on my repeat meds but I'd never take it without asking first. All the best.

[HeadInASpin in reply to Haz58]

I asked my doctor this very question today as I’d read somewhere that anti inflammatory drugs should be avoided. She said it’s fine for me to take Naproxen for pain and swelling with co codamol in between. I have uncontrolled sero pos RA and currently take 20mg MTX injection weekly. I’m really not well at the moment, so have to keep the pain and inflammation down as much as I can. I wonder if it’s more long term use that should be avoided due to effects on kidneys and/or liver?

[Haz58 in reply to HeadInASpin]

Yes possibly plus naproxen can cause tummy problems like mtx etc. i hope you feel much better very soon. It seems a lot of us are suffering this winter. Can they not add sulfasalazine or something to the mtx?

[HeadInASpin in reply to Haz58]

Thanks, I'm waiting for a review with rheumatology (should have been last week) but they're short staffed apparently. They have given me another 4 weeks 20mg injections to tide me over until they can arrange an appointment.

[Newbie73]

I will mention it to the rheumy team when I call the nurse advice line.

Thank you

[Seatgeorge]

Speak to the rheumatoid team at the hospital,they can advise you and also speed up any pending appointments. I was told that RA does not effect hip or back by the consultant mostly the smaller joints, sometimes a steroid jab works wonders, good luck.

[Haz58 in reply to Seatgeorge]

I was originally told that too. But when a course of prednisolone stopped everything hurting, hips, knees etc my Rheumy said it must all be down to RA then.

[Seatgeorge in reply to Haz58]

I think you will find when you take steroids ie predisolne it stops all aches and pains,as per a steroid injection, good.luck

[Sheila_G]

Hi. Firstly, you are not being dramatic. Secondly, it sounds exactly like flare ups but don't despair. I am in remission but I have similar flares to how you are describing. When RA attacks it does tend to mirror so if you get one shoukder hurting the other usually follows, likewise with other joints, but not always. This doesn't mean your drugs are not working, likely it means that if you weren't taking the drugs you would be in a much worse way. Of course, you must always speak to rheumatology if you are concerned about anything but try not to worry. You could still be heading for remission. Good luck.