Hi just wondered if anyone had experienced inflammation markers being normal but still in alot of pain? Had my rhuematoid app today after feeling like the Benepali injections just weren't working for me, after being on them for the maximum amount of time they have to work (12 weeks) an was told that going off my bloods the injections are working. However I'm actually feeling worse an getting alot if pain in my fingers, hip, shoulders etc. My Rheumy said that as the bloods are showing no inflammation that this could be down to either chronic pain or fibromyalgia which I've never had before. Has anyone had the same experience? I don't want to come off the Benepali if it's working and it's not the rhuematoid that's causing swelling in my fingers and pain etc but it does make me wonder is it the rheumatoid or one of those other things. I thought being on a biologic that I wouldn't be experiencing the same pain as I was before if it's working. Anyone that's had the same experience or similar I'd really appreciate you're advice
Inflammation levels ok but still experiencing pain an... - NRAS
Inflammation levels ok but still experiencing pain and swelling
Hello Revita. Do I assume your rheumy appointment was by telephone? If so, because your consultant can't see or feel your joints, there will have been a reliance on blood results as the only available evidence. So it's possible your inflammation markers have been going down but it is also still possible you are in pain as well. I've been there! It would seem that Benepali is not working sufficiently well for you (I had the same problem). I was taken off it and had to make do with steroids for a while until I could start a new treatment. Are you taking methotrexate with the Benepali?
Hi Lola ridge thank you for you're reply. No I'm only on Benepali as methertrexate didn't agree with me, also my appointment was a face to face where he looked at my joints an said they didn't look as bad as last time even though I've felt like the last 2 weeks it's spread to my shoulders hip and knee. He said that he thinks this is either chronic pain or might have fibromyalgia which I've never had. I'm just a bit confused he that he went off what my bloods said back in January an also didn't scan my hands as he obviously thought there was no need to. He's under the impression that as my inflammation markers are under 5 that this pain in my other joints and still my fingers an wrists etc isn't due to the rheumatoid an thinks it's due to one of those. I'm not saying he doesn't know what he's doing but I'm a sero negative an until I had an actual scan nothing showed up in my bloods to indicate I even had rheumatoid even though my hands were sore and my fingers were swelling. I'm just a bit confused at the fact that if they couldn't tell I even had rheumatoid by my inflammation markers when I had it how can they tell that these meds are working as it didn't show up in my bloods I had it. Also he said the pain in my hipand knee etc isn't the rheumatoid but I do know that you can get it in you're hip etc as he done a few little exercises when I first got diagnosed to see if it was in any of the larger joints which indicated to me it was possible to get it there an now I have he doesn't think this is the rheumatoid. He's advised me to start taking amitriptyline for chronic pain to see if it helps as it would if I had fibromyalgia then I suppose if it doesn't I know it's the Benepali that isn't working. I just feel like surely I shouldn't be having more pain in other joints I never even had before if it's working? Unless i suppose he's right and the pain is due to fibromyalgia, trouble is I have the symptoms of rheumatoid still in my hands and knee etc an don't have any of the other symptoms of this fibromyalgia. Sorry for the long winded reply, I hope this makes sense I'm just not sure what to think
As Lolobridge says if this was by telephone then not necessarily that you have no inflammation, just that the blood markers are changing faster than your sore joints. And even when physical swelling gone it can take weeks for pain to calm down.
It took me just over 12 weeks to start to respond to Enbrel. We were just about to give up on it... fingers crossed that all improves any day now 👍🏻
Thank you for you're response helixhelix that's gave me some hope then, maybe I'll start to see a difference soon then. Fingers crossed 😊
I can't really give any informed advice but I just wanted to say I am seronegative and my inflammatory markers have never reflected the severity of my RA pain.
I really hope its as helix says above that your joints will catch up with your blood results.
Take care x
Thank you for you're reply. I agree I don't think mine have reflected the severity of pain either. Hopefully something works soon
I’m the same at the moment,rhuemo says bloods not showing much,but when wrists were scanned a couple of wks after previously being given steroid injections. he agreed there was a lot of inflammation suggesting that the meds were not working as they should be.
Hi Mollieharry, can I just ask were you're inlammation markers showing as normal on you're bloods aswel? I'm just wondering if your inflammation markers can be normal but your rheumatoid still quite bad? As their telling me that going off my bloods the meds are working but I dont think they are as still in pain.
Rhuemo never told me the actual reading,just said that the bloods weren’t showing the true picture but the scans showed there was high levels of inflammation.
I’ve had RA since 2012. My inflammatory markers at their WORST, as in right before wrist surgery to address inflammation, never went above 17 ESR. I’m always low. I had rheumatoid factor 47 when diagnosed, but now it’s low. I’m seronegative. In the US we also do the Vectra test (newer and tests for over 40 signs of inflammation) and that’s the only one that matches my MRIs or ultrasound results. So, when they showed inflammation happening, VETRA did as well. I also have a very high pain tolerance so can be having damage and not know it. They call me confusing in the UK haha. In the US they said def RA. My mom has AS, my aunt on my dad’s side RA. Passed from it. So....in the UK they say maybe it’s AS. And with that I’ve read your CRP may stay lower? Who knows..it’s so personal. I will just say that in the end if you have smoldering inflammation you can feel, talk about changing meds. It depends on your risk tolerance and how aggressive you want to be. My rheumie in the US changed mine several times and fairly immediately (she gave it 6-9 months) because she wanted me in remission if possible. We got there in the end. There are so many options! I was nervous at first, but then realized it’s about what my body needs.Other rheumie’s consider low inflammation ok. But I’m in my 40s and my rheumie and I wanted me to limit as much destruction as possible. It’s so hard, right? Very personal and between you and your doctor. I will say I’d get a second opinion if you can - you are clearly nervous about your doctor’s advice and in the end this is YOUR life, not his. Why not talk to a private rheumie for one appt and see what advice/thoughts they have? Just to get another take... I personally feel like any doctor that dismissed your pain without even considering trying other meds is off. BUT, I’m not a doctor, hearing all your conversation with him, etc. Still, having been to too many doctors that dismiss my gut feelings or pain...well, I’ll never go to one again. I think you have to be able to at least hear each other and have a conversation about it all.
Thankyou for you're reply hanaleiba it's interesting to hear other people's experiences. I think that's what I'm bothered about if they say it's not the rheumatoid then it turns out that it was and there is irreversible damage. It's so frustrating an seems never ending trying to find something that actually fully works I'm hoping that in a few weeks the Benepali ends up working as I've seen with some people it's taken over the 3 moth period to start working. I'm on my 12 week today so fingers crossed
I get this all the time. Disease very active and CRP & ESR both normal or low. Had an MRI scan to prove that my disease is active and I have high levels of inflammation.
My questions is WHY? Why does this happen in some people?
I think it may be that I am vegan and so eat very low levels of inflammatory foods.
Any thoughts?
I can have a CRP if <1 and still have very swollen hands. Bloods do not reflect the whole picture in my case either.
I empathise. I can also have low inflammatory markers but still have pain. It does seem to be a thing. I do also have OA though, that can give me a kicking. I'm hopeful that you just need a little longer on Benepali & the pain significantly reduces. Sometimes though additional meds are needed to tackle residual pain. Have you discussed anything at all, to help you through just now?
Thanks for the replies it means alot speaking to people who actually know how I'm feeling. It's so frustrating trying to get the right meds that fully work an feels like it's taking forever but I'll try an stay positive an fingers crossed I'll get there. I've spoken to my Rheumy again an they've also suggested trying 10 days of not taking the benepali to see if I notice a difference an if it was working for me an if not then restarting it anyway just to see if I feel better once starting it again so I suppose I could try that. Also I'm on my 12th week injection today and I've read some people have said it's only started to work on the 12/13 week. I might carry on with it for a few more weeks and then try the 10 days off before going back to my app. Hopefully it starts to work
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