I’ve been struggling and not sure how to proceed....
I’ve been seeing a rheumatologist since July last year and I’m still in a great deal of pain. I had pain in a number of my joints; shoulders, elbows, hands, wrists, knees and the back of my ankles.
I first went to see my GP and he was a little confused, so carried out some blood tests; my CRP was 88, so called me in the next day and carry out more blood tests to investigate further. I would get the results the week later but in the following days I couldn’t take the pain anymore so attended A&E; my CRP was now120. I saw a rheumatologist and he gave me a 120mg steroid injection, said it would give me 2-3 weeks pain relief and wanted to see me in 6 weeks. It only gave me 1-2 days relief.
The GP called me back and put me on oral steroids, which apparently he shouldn’t have done. I was then put on methotrexate, with 3xsteroid injections over 3 weeks then after 3-4 months and no joy, so sulfasalazine added in combination and another 2 steroid injections . Again after no joy and the consultant discussed biologics.
I had my appointment with a different consultant a few weeks ago and it was a complete u turn....taper off the steroids and lower the dose of sulfasalazine and told I don’t qualify for biologics.
I have no swelling or redness and never had, rf and ccp negative, but an in a great deal of pain and restricted movements. The pain is also in my ligaments. I am 48, male, previously very fit, don’t drink or smoke. Struggling to sleep and very fatigued.
I feel totally lost and don’t know what to do next...... my symptoms are still the same as when I first what to my GP and rheumatologist. I know it’s tough when seronegative but just feel no one is listening.
Can anyone please help
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FredFudge
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You've definitely had a tough year for sure, you must be extremely fed up.
I think medically Drs like people to use steroids at the lowest dose and time possible so I guess that's their thinking behind tapering you off but if your current DMARDS aren't working and they are sure you have a form of inflammatory arthritis then you should have some kind of plan In order.
Did you ask why you weren't eligible for biologics when the previous Dr had suggested them?
Did they give you a reason for the reduction of your methotrexate and sulfasalazine? As you say it's bizarre they've sent you away without a plan of action in regard to how your arthritis is going to be treated.
I've learnt that you've got to politely push, do you have an email address or phone line you can contact your rhemy team and ask for clarification of your treatment and how they plan to tackle your inflammation. You can always email your consultants secretary.
Be honest with them and say you don't understand their thinking in changing your treatment and you are in constant pain and need some help. Maybe they are thinking another DMARD ?
Dont let them forget about you, alot of the time they think everything is ok if they don't hear from you.
I am seronegative and I've never been palmed off because of it (and the highest my crp has ever been was 18).
I was diagnosed last May and im still to find a treatment that works but one thing I've learned is anything to do with rhematology takes alot of time, much longer than I thought. But I'm confident I will get there.
I've never used a hot water bottle as much as I have this last year , I find this helps alot for my stiffness and cold packs for the inflammation.
Hi, I'm sorry you are going through this currently it can definitely take time but it is frustrating when you feel things have not been communicated effectively. Sometimes it is good to contact the Rheumatology nurses they might also be able to help with explaining what has gone on and listen to your concerns. I normally will email them so they reply with answers to my questions and if not arrange to speak to you over the phone.
Hi, sorry to hear your going though a rough time. Its disappointing that your consultant appointment wasn't great. I'm sure others will explain better than me, as I'm still learning about RA myself, and being 37 it all feels very new even after having symptoms for 3 years.
My understanding is that you need to have tried 3 dmards before moving onto biologics ( my ra nurse told me that)
I had the same high crp score as you 128, no RF but was still diagnosed with RA. I'd call your gp and explain your not happy and see what they suggest, or I'd call the rheumatology nurse and explain how different the 2 consultant opinions have varied and how much pain you are in. I did this last year as I was desperate, i saw a different consultant at the same hospital and was happy with the advice/treatment in the end.
I've tried 3 dmards, a biologic and now about to start a jak inhibitor.
Everyone is different, but I found the steroid injections didn't work for me, however a higher dose of steroid tablets gave more relief.
I think you will have a few responses from this post, that offer alot of advice. I've had such great support on here, which has been very helpful.
It’s strange that they have changed and I haven’t got a plan.
The first couple of times seeing the consultant he understood that the steroids and methotrexate wasn’t working and therefore added the combination. When I first spoke to the other consultant he had said he wasn’t surprised by the DMARDs not working due to the little effect from the steroids; therefore the suggestion of biologics. It was like a breath of fresh air speaking to him. I was looking forward to the meeting and the next step. So I was surprised when he reduced the treatment with no follow on plan and questioned it a lot, but he was very dismissive.
I was that disappointed I wrote to both consultants explaining how I felt/ questioned the plan and have no response.
I have also rang the help line several times, the nurses have been great on the phone but no follow up.
I’ve have been diagnosed with inflammatory arthritis previously.
I’m guessing that the not qualifying for biologics was due to my CRP/ers markers now being lower and no external swelling or redness, but I never have had. That with no RF/CCP factor.....but still the same extreme pain!
I've just looked back at my diagnosis letter, It was first suggested I had pallendromic arthritis, then was diagnosed with RA a year later. The letter says I didn't have redness or swelling and no Rf.... however 2 years on I have redness swelling and a recent scan showed inflammation. I'm annoyed for you as we know how quickly you can go downhill with this disease. Keep on at your rheumatology team until you get answers 🤞
I’m sorry your struggling. Everything takes so long with this disease.
I’ll give you a little back history of myself. Diagnosed 5 years ago although now now I was having symptoms for years and years but my bloods didn’t flag anything up and I was told for years I was depressed 🤬. I started on methotrexate and did ok for about 18 months lived a normal busy life and continued with exercise ( about 9 hours a week) then bang all hell broke loose . Tried sulfasalazine and Hydroxychloroqine but was allergic then my first Biologic and now on a Jak inhibitor and things have improved. Unfortunately each drug takes about 3 months before you see any improvement and that’s the hard part finding the right combination of drugs that work for you it’s so individual.
Being Proactive is what I have found we have to be. If your in pain/stiff / swollen / fatigued or flaring then your disease is active your clinical team need to know. If they don’t they can’t help or piece together the jigsaw that is your disease. When things were bad for me I was in constant touch with my team if I hadn’t and just waited till the next appointment I doubt I would now be back on my feet . If they don’t here from you they presume your ok . I think you need clarification on what your rheumatologist wants to do. If your not happy get a second opinion . Your not being a nuisance your being proactive.
Hi ☀️ What a rubbish ride you’ve been having. I’ll share some thoughts with you as someone who has seronegative RA, and has had multiple drug failures, as well as an additional fibromyalgia diagnosis along the way.
- I think you need to push your medical team for some scans - preferably MRIs of the main joints causing you pain. You need to know if there are signs of inflammation within the joint. My joints often don’t look very swollen (or even at all swollen) from the outside...but on the inside, there is significant inflammation. As well as the MRIs you could ask for an ultrasound on your hands (and feet).
Depending on the result of those, I would:
- Ask to try another DMARD like leflunomide or hydroxychloroquine if there is inflammation in the joints showing on your scans.
- If there isn’t inflammation showing on the scans, I would take a step back and ask them to re-evaluate everything. And I mean everything. Why is your CRP raised? Why are steroids not really helping? Why are MTX and Sulfa not helping? Has something been missed? Could something else be causing your pain?
I spent years telling them things weren’t right and the drugs weren’t working, only to find out that a lot of my problems were coming from undiagnosed fibromyalgia (on top of the uncontrolled RA).
As others have said, be persistent. Be a pain in the proverbial if you need to be, but push for answers - always.
Good luck and please feel free to ask any questions x
P.S. The lack of visibly swollen joints can be quite a hindrance to accessing biologics too - so if you get MRIs that show inflammation inside the joints, this will be beneficial for any assessment for biologics.
I had X-rays taken on my hands originally and showed no damage.
I’ve had an MRI on my lower back and no inflammation seen, only normal wear and tear.
I had some ultrasound on my hands last week and nothing really seen.
So I’m confused.... I have never really had any redness or swelling, only high CRP/ERS and lots of pain and lack of movement/strength.
The pain in my hands , wrists, elbows, shoulders, neck, knees and ankles is in all the joints and knuckles etc. The pain also goes up into my ligaments. If I try to push myself off the floor, I have little strength and the pain is felt up into my wrists. Same with my shoulders and neck, very painful and more so if I try to lift anything. I struggle to squeeze my hands tight and hold a fist.
The pain is intense during the early hours , so I can’t sleep, and worse on a morning. Particularly in my hands and shoulders and the rest when I try to get up.
If the inflammation markers have come down and no obvious swelling, internal or external, is something been missed?
I start to question myself,.....I’m not one for going to the doctors or taking tablets. Generally quite strong, but I’m struggling to understand......
This is interesting. Might be worth seeing if you can get some MRI scans on your large joints - knees and elbows - especially now your steroid usage has dropped.
To be honest, if I were you, I’d be questioning the specialists pretty hard at this point. If you’ve got no active inflammation, what is causing all the pain?
Out of interest, do you have any other symptoms such as fatigue that feels like the plug has just been pulled and/or brain fog (like you can’t find the words you want)? Light or sound sensitivity? IBS symptoms or needing to urinate more frequently?
Seronegative RD can be difficult to get people, rheumatologists included, to take you seriously. I am seronegative, with no inflammatory markers either. It might be worthwhile keeping a daily journal noting how your joints and overall condition is and take the journal to your next appointment. I did this and requested that my one page summary of the journal was scanned into my rheumatology notes. I also always take someone with me to each appointment, usually my partner, who takes notes throughout the appointment in my big orange book. I found I was taken seriously once I started writing and submitting my health concerns down. I'm now receiving good care and take a JAK inhibitor (advanced therapy).
Keep calling your helpline / rheumatologist until someone listens too.
Just a suggestion to help you in the short term while you work your way through communicating with the Rheumatology team. You could ask the GP for some anti inflammatories - I have Etoricoxib and find they reduce the swelling and pain quite well for a few hours.
It took me 3 years to be diagnosed seronegative my rheumatologist was treating symptoms as he knew something up as I had a positive test then numerous negative tests . I then continued on hydroxychloriquine and naproxen then moved to England ,was really struggling new Rheumatologist did every test ,was put on first line of meds , 3 months later second line of meds then 3 months later put on biologics ( methotrexate and Humira) feel much better . I too only recently get warm joints but not red
This is such a frightening situation to be in, I really sympathise with you. With Rheumatology I've learned there is no 'one size' fits all when it comes to medication and remedy, we are all different characters with different responses to medication and intervention. I was in a similar situation as you 20 years ago, it took several years and three different biologics to find one that has maintained a degree of mobility, post damage.
I think the best advice is to think about how you can help yourself.
I noted very early on that certain food caused inflammation in my joints. Also if you can find a space to de-stress, like simply floating in a swimming pool. Think about the little things that bring you joy. Be kind to yourself.
I thought everything will be fine when I get to see the Rheumatologist, the team will 'fix' me. I learned it really doesn't work that way.
Believe everything will be okay, believe in yourself.
Sending you the kindest, caring best wishes, you've got this.
I can't see why you don't qualify for biologics. I believe you have to have failed on two conventional DMARDs which you have tried over several months. Try to get in writing from the consultant the reason for saying you don't qualify. Maybe you could ask to go back to the first consultant or otherwise ask for a second opinion.Whatever you do, don't just meekly accept what they are telling you. You are the one suffering and somebody should be trying to help you. Sometimes it's a struggle to get the right treatment. Just remember, the squeaky gate gets the oil. If you go away quietly, they will simply forget you or think your problem is solved. They have plenty- too many - more patients to see.
in reply to
You have to have failed 2 DMARDs, but also either have a DAS of more than 5.1 in RA, or 3 simultaneously swollen and 3 tender joints in PsA. They can make an application in PsA if you have less than that but it has significant impact on ability to function day to day.
in reply to
Thanks, Charlie, for the clarification. Plenty of hoops to jump through then!
Excellent! One final tip is to take in an A4 sheet of paper that lists all your symptoms/struggles in bullet points and then lists all the questions you want to ask.
This makes it easier for you, and you can also just hand it over to the consultant so you don’t have to ask awkward questions out loud 😂
Firstly, just wanted to add my sympathy for what sounds like a truly awful year for you. Lots of good advice already, but just to add what others have said, you haven’t mentioned if you are on pain relief? My recommendation would be to try to get more support from your GP on this aspect (in my experience Rheumy team don’t see this as their responsibility) - if you are able to take them a strong NSAID such as Naproxen or Etoricoxib this may help your pain levels in the meantime whilst you are trying to progress better treatment with the Rheumatology team. Re. Not qualifying for biologics, my understanding is that the qualification criteria for biologics is different for psoriatic arthritis than RA, so if you have any psoriasis (or even family history of psoriasis) you might like to bring that to the attention of the rheumatologist. Finally, if you haven’t done so already, I would recommend contacting the NRAS helpline who provide excellent advice and support, particularly useful when newly diagnosed. Hoping things improve soon for you, keep us posted won’t you? 😀🤗
Sorry to hear that you are suffering so much. It does seem like no one listens but it takes time for them to find out what’s best for you. I know it probably doesn’t help much but I was diagnosed in 2014 and been on all sort of medsand still continue to take them - but they get there in the end. I’ve had to stop my Beneipali injections for the moment as I had A basal cell cancer removed recently and now my pain has returned big time. I thankfully have a much needed appointment next week with my consultant, I can’t wait as I feel like crying my pain is so bad. And chopping off my arms. (Not really) but pain unbearable.
Don’t despair... they will sort you out, I try hot water bottles which helps sometimes and go to bed with pillows to support hips and arms.
Good luck , I hope they find what is suitable for you
All the best💐
Hi I am really sorry to hear you are struggling. I hope your appointment goes better next week, if you need any advise or support please contact the NRAS helpline on 0800 298 7650, my colleagues will happily help you. Keep us informed of how you get on next week. Best wishes Debbie
My experience was years of back stiffness and pain, wrist problems, which nothing over the counter helped until my doctor prescribed Arthrotec 75 mg. ( Diclofenac with Misoprostol, to protect your stomach)It’s a miracle drug for me the last 16 years , though now only 50 mg. Without this med I simply can’t function, and I would encourage you to ask a doctor about trying it. Also avoid stress if possible. Good luck.
This is interesting. I used to take diclofenac and found it quite effective (for inflammation anyway - obviously it doesn’t stop disease progress). But then the GP started pushing naproxen instead, which doesn’t do a thing for me.
I asked for diclofenac again recently and they said “no” due to a study that had found links with cardiac disease. But a doctor friend of mine told me the risk of cardiac disease is minimal, especially if there is no family history. It’s frustrating not being allowed a drug that I know can help me - and I’ve taken safely in the past. Hey ho! Glad yours is working miracles, though ☀️
About 7 years ago the same general cardiac warning was the reason my Rheumatologist lowered the dose to 50 mg. I have been taking diclofenac for almost 18 years. I was briefly put on Naproxen instead, and it didn’t help me. Believe me, when I first took diclofenac, I woke up in the middle of the night without the back pain I had been in continuously for 3 years. I work in a heavy trade which I couldn’t do without this NSAID. I also have been on MTX for disease mod. I would think if your doctor could be persuaded, the inflammation reduction would outweigh any cardiac concern. I take twice a day, if I forget my pill, I feel it!
Thanks for this. I’m going to ask again - but I need to avoid this awful GP who I always seem to get (even though he’s not my actual GP). He has the worst bedside manner...as in none whatsoever...and does not listen to anything you say. He just decides what he’s going to do and that’s that. I told him about the pain relief I’d had from diclofenac in the past and how I’ve got low cholesterol and no cardiac issues in my family. He just said “I don’t prescribe diclofenac for anyone.” Wow, thanks for that! Years ago I went into the surgery as I was struggling with a massive flare up. I burst into tears in the consulting room...like proper ugly crying...and he just sat there. Didn’t even offer me a tissue or acknowledge I was upset. Robot doctor. Anyway, rant over 😂 I’ll try again, with one of the human GPs!!
I have seronegative RA and have taken Hydroxychloroquine and an anti inflammatory Meloxicam. Fortunately have worked for me but took a few months to kick in. Now 5 years on I'm pain free and take a reduced dose of Hydroxychloroquine. Press for more information and insist on a plan.Good luck.x
I have some naproxen and I am taking it but I’m the same doesn’t do a great deal for me 🥴
Been getting some advice and reading up about the pain in my joints and the lack of swelling/redness or any inflammation been show on the X-ray/ultrasound; was starting get confused by this. Especially with my CRP and ers levels now reduced.
Sounds like the steroids can mask bloods and the inflammation and some inflammation is in the joint wall/lining so may not show up on scans, apparently makes the joint lining become “spongey”. This would explain a lot......🤞for consultant appointment on Thursday.
Yes, the steroids will have reduced inflammation - so could have made the scans confusing. Which is why I think you need some additional scans...preferably a few weeks/months after stopping steroids entirely.
But the fact that you’ve never presented with any swollen joints - even before you took the steroids and prior to diagnosis is puzzling 🧐
It will be very interesting to hear what your original consultant says when you see him!! Good luck xx
Steroids and scans generally don’t mix - you need to be off steroids for an absolute minimum of 5 days, but ideally significantly longer. I fell foul of this last year having followed the nurse specialists advice of stopping for 3 days: the consultant told me off for not stopping for longer. I also had an MRI that showed no active inflammation early after being diagnosed, but had been on steroids for about 6 weeks at that point. Thankfully it did show signs of historical inflammation, so still served a purpose in my case, but the steroids may have masked some current things. X-rays will generally only pick up permanent joint deformity caused by IA.
Hi Fred, I understand your frustration as I'm in almost exactly the same place that you are in. In desperation I have paid to be seen by a private rheumatologist who has told me to start taking my hydroxychloroquine again and has ordered the MSUS scans that were apparently not available through NHS rheumatology at the moment because of covid. I won't go on too much here but will post a full update when I've had the scans abs will update my profile accordingly.I'm slowly losing power and strength in my arms and my elbows hurt all the time.
You're not alone in suffering the confusion that follows diagnosis. And if course suffering pain too. Because mine comes and goes I don't like to take naproxen for any length time but can recommend paracetamol, aspirin and ibuprofen for immediate pain relief. It's a bit hit and miss but takes the edge off.
Forgot to say that I'm beginning to understand properly that DMARDS take a long time to work : I was put on hydroxychloroquine in March 2020 plus mtx October 2020 and stopped taking both end if Feb (?) as I thought they weren't really doing anything. I have to admit that I feel shitter than ever and starting to regret it. My point is that July may just not have been long enough.
Not good that you’re feeling pants, but at least with the DMARDs you can go back on them if you need to. And second time around you have more of an idea what to expect and how to monitor progress. What are your next steps anyway, can’t remember where you got to with it all??
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