Can Rheumatoid be active without significantly increased Inflammatory Markers?

[ForestArrow]

I'm new here (only found out about this forum today). I called up my GP to find out my blood test results, and the only comment on it was "nothing of interest, tell patient all is fine". The receptionist couldn't tell me my results and my GP would only flag it if my inflammatory markers had gone up significantly. Because he's said nothing interesting, I've been told there is no point me getting a print out of the results for my own use (to compare to past ones myself).

The reason I'm asking this question is because recently my joints have been in a lot of pain, my fingers and wrists have been so swollen on some days to the point I cannot bend them. I've been struggling with weight loss because I have no desire to really eat, my skin and eyes are dry constantly, and I'm sleeping a lot with no energy. These to me are signs that my Rheumatoid might be active (I've been in 'remission' for about 3 years now and don't take any medications except ibuprofen), but I don't want to push back on my GP or call my specialist if I'm just going to get told that it's in my head again.

TL;DR: Could my Rheumatoid Arthritis be active without significantly increased Inflammatory Markers?

(Sorry for the newbie question)

[Simba1992]

Unfortunately it can. If you have the symptoms you discribe you could insist on a US or MRI these would pick up synovtis. I think you should push if you are feeling ill. Good luck.

[ForestArrow in reply to Simba1992]

Thanks for letting me know (sorry for the late reply). Have been pushing hard on my GP, and I got in touch with my rheumatologist who is gonna do an ultrasound on the affected joints for me

[Simba1992 in reply to ForestArrow]

Good for you!

[helixhelix]

Do you have your past blood test results so you know what your markers were like when your disease was obviously not controlled? You could be like me and have naturally low inflammation markers. It is only because I have kept my own records that I've been able to prove to GPs that my markers are nor normal for me.

So I can, for example, show blood test results that look normal, with photos of swollen joints taken on the same day...

It's your body and your health so push!

[Simba1992 in reply to helixhelix]

Hello HH,

Just a parenthesis, I was wondering about your remission. Since your bloods never showed anything, did you have any kind of scans done during this period to check inflammation? Sorry for my nosyness but really curious.

[helixhelix in reply to Simba1992]

I tend to say that I was largely in remission for about 5 years, as I did have little flares here and there. Usually my own fault as I had overstretched myself. However, luckily, for several years I also had rheumies with ultrasound machines in their offices so we could always check what was going on. More often than not, and despite good blood tests, if I felt that a joint was struggling then it did show up inflammation. And also had rheumies who were happy to do guided injections there and then to calm things down.

I feel very lucky when I hear of people waiting weeks for a scan appointment, then weeks for the results, and then weeks for a guided injection.

Actually thinking about it, my bloods didn't show "nothing" - just nothing that is normally accepted as a flare. So anything above an ESR of 6 is not good news for me...which is laughable! Especially here where a normal ESR for a person my age is considered to be under 30.

[Simba1992 in reply to helixhelix]

Just thinking about how much the meds control progression. Do you feel that the progression was slowed down to how big a degree? How big a part would you say the steroid injections played? Most people here that have been on meds do have RA changes in their hands and feet and often knees sjoulders as well. I really have a very unclear picture of how much in fact the RA meds help? Would be glad to hear your thoughts on this.

[helixhelix in reply to Simba1992]

In a word, massively! When I was diagnosed I had 20+ swollen joints, couldn't use my hands, struggled to walk etc etc. I was virtually housebound and very dependant. With the drugs I can live fairly normally and generally pain free.

Quite a while back I made an effort to taper off drugs, just dropping doses not stopping any of them. Within three weeks I had an erosion on one of my toes. Luckily I had a rheumy appointment and she injected my toe straight away. All sorted....

Yes I have minor changes in joints, mainly hands and feet but a bit in shoulders and an erosion in my neck. (I also have OA, so that hasn't helped). But compared to what I believe I would be like with no drugs these things are miniscule! Irritating, but not disabling.

[ForestArrow in reply to helixhelix]

My GP service is pretty, uh...how to say, unreliable. I asked for a copy and got told "well, because the GP said it's fine, you don't need to see it" and that's usually the case with them. Have to go through a data access system to see it myself. Saying that though I pushed on them and got in touch with my Rheumatologist and they're gonna do an ultrasound \o/ (sorry for the late reply)

[Sheenadon594]

This is my first post on here. I felt I had to respond to you as your situation seems to be very much like mine. I have been in remission for 5/6 years then last summer my arm was very painful & could,nt lift it up. Pressed the GP for blood tests. Nothing abnormal. Then feet swollen, then other arm painful the wrists & fingers not functioning. Different GP gave me Naproxen which initially worked. Blood test showing ESR @ 22. No further action required. I have had to push & push to be taken seriously. Last blood test showed ESR @ 27 & I showed him photo of bath hoist that I have bought to get in & out of bath . Suddenly he has sent urgent referral for me to be seen by. Consultant but that has taken weeks. I think Most GP,s don’t understand RA. Mine kept talking about tendons & tendernitis. Keep pushing before it gets too bad.

[eastbournelady]

Just a suggestion leave a sae with your drs receptionist for the blood results each month & insist they send them to you whatever the result that way your surgery isnt having to pay the postage. You are entitled to see your results.

[Knip in reply to eastbournelady]

My surgery doesn't share results very easily at all, and I certainly can't get a print out no matter what! It is frustrating...my son in Greater London can access his results on the Patient access site. It's almost as if they are none of our business. My practice isn't bad as they go in all other ways, but we are kept in the dark!

[roseyx]

Hi ForestArrow The Receptionist at my GP practice emails me blood results. I have to ring and remind her after I have had tests to do this. Maybe you can get your GP to tell the receptionist to forward them to you this way. It's good to be able to see all your results and you are entitled to. Over time you can start to get a picture especially with the inflammatory markers ESR & CRP. Mine rarely go over what is considered the normal range but fluctuate within it a lot. I always ask to have these done along with all the rest because it doesn't usually seem to happen unless I do.

[mickam]

Sadly you can have active RA without increased inflamation markers. Before I was properly diagnosed I had numerous blood tests which showed, in my GP's opinion, nothing of any real interest. In fact one GP inferred that I was wasting their time. I pointed out that as I had already been diagnosed with Type 1 Diabetes, Antiphospholipid syndrome, PMR, Heart disease,and COPD, plus one or two other bits and pieces, I really had enough to keep me going without inventing new conditions. Even then he was still suspicious and Ialmost had to demand a referral to see a Rheumatologist who also said that the bloods were non-conclusive but added that he was pretty sure I had RA and would proceed on that basis.

[Fruitandnutcase]

If you are in the U.K. you are legally entitled to have a copy of any blood tests you have done. Your doctor can’t refuse.

Some people have to pay for each sheet of paper used. I’ve never been asked to pay but I was asked to come in when it was a quiet time for the receptionists so that they would have time to download it all for me. Just tell them that you want them for your records.

Oh that you could access your results online at all GP practices

[Lizzy-m]

Yes. Unfortunately this fact made it so difficult to diagnose and precious time gets wanted. Inflammation has never showed on any of my blood tests. It did show on scans. Thankfully, only then , was action taken. Take care x

[tom180711]

i'm another one! positive rf, very high anti ccp but yet nothing on crp or fsr tests when flaring! keep pushing them!!

[Beachwalk]

Hi

For your own peace of mind and understanding you need access to your medical records. Which are yours and your entitlement

First step go to doctors and ask for a print out then ask for full access to be given to your on line medical notes and loogin ID etc.

I have a very comprehensive spreadsheets showing all my books tests.

Good luck.

[Knip]

I wish it were that simple, but sadly not so in my practice.