When I started on my RA journey approx. 9 years ago, my ESR reading was just over 100. I was started on MTX and slowly the level came down and I did start to feel a bit better over time. However, since that original RA diagnosis, my Rheumy left and I have seen two replacement rheumys. The last visit to clinic resulted in my being told my ESR has dropped to 12 and that hey, I am in remission!! I am clearly not in remission because I still have the same old hot and painful joints. I also have severe problems with my hearing and vision, both caused by auto immune disease according to the consultants I have seen for these distressing problems.
I was wondering if anyone has been told they are in remission, based on ESR reading, even tho they still are suffering.
By the way, seen my GP this morning and I am now on my way to being seen by new Rheumy in different County.
Hi Jockety, that is a very interesting question. Using the DAS28 method, a DAS28 score of greater than 5.1 implies active disease, less than 3.2 well controlled disease, and less than 2.6 remission. You can find out about the DAS28 score on the following link:
We recently conducted an online survey entitled ‘What does remission mean to you?’ Our aim was to uncover the views and experiences of people living with RA, looking at the term ‘remission’, what remission means to people with RA and their understanding of DAS28 (Disease Activity Score 28). We were delighted that over 1,100 people took part!
This report summarises the key findings and learnings from the survey. You can look at the survey by following the link below:
Hi Beverley, the information you have sent me is very helpful, thankyou. I have never had a DAS28, it has never been discussed either. I found the videos very interesting with patients discussing their scores.
I think I have received poor care from my rheumy and I am hoping things will improve when I finally get to see my new one. In the meantime I am very lucky that I have a marvellous GP to turn to. In the meantime I have to cope with my hearing/vision problems which are a legacy of this horrible disease. Lynda x
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Hi Jockety,
really glad you found the information helpful
Beverley
My ESR is generally less than 10 since being treated with dmards so when having side effects my specialist nurse wanted to make sure my disease was still active before placing me on something new. She thought I was in remission due to a low ESR and lack of redness and swelling even though I could tell her exactly where I could feel the inflammation. An ultrasound scan showed inflammation in exactly the places I could feel pain and this was only carried out on my hands and wrists, never mind the pain I felt in my feet. I was immediately started on a new dmard and given a steroid shot. So I would only consider myself in remission if esr was low and I could not feel inflammation going on.
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Hi Paulywoo, thanks for replying with your experiences, it was interesting to hear about your ultrasound scan. I had one of these also, which did not show erosions, so then he decided hey, don't think you have RA. Completely disregarded all my other joints. He did say however I have Duyptrens in wrist/thumb in both hands but offered no idea on what to do about it, even though I am reduced to wearing wrist splints most of the time! I've given up now and waiting to get seen at another hospital. We have so much to cope with don't we? Take care, lynda x
My ESR has only ever been raised when I've had an infection but my rheumatologist has never suggested that I'm in remission. I wouldn't expect him to because I am in constant pain. Clemmie
Hi Lynda, I know that I'm lucky but I also know of another person on here who saw the same doctor and didn't particularly like him. So I guess it's the luck of the draw really. It shouldn't be, but that's how it seems. And don't despair. I've been there many times over the years and somehow always come out of it. Hope you are feeling a bit better today and see someone nice soon. Clemmie
You're obviously not in remission if still suffering as you are. Hopefully your referral to a new Rheumy will confirm. I have lived with RD for 6 years. I was informed I was "fairly under control" by an SpR based on ESR of 5 & DAS28 of 2.04 back in January & considered me to be in remission. I show little in the way of swelling & the pain I exclaimed when being pushed & prodded were tut tutted at. He also considered that most of my symptoms are due to osteoarthritis (I'm in the osteopenic category, borderline osteoarthritic) rather than inflammatory arthritis, yet didn't suggest anything to help ease those symptoms. Bearing in mind that a lot of my problems are in my feet & not included in the DAS I have little doubt that had they been included this would have taken me into the next category & not considered to be in remission at all, although this is my aim. Because of his findings he instructed me to taper off my steroids & to take my NSAID only on a prn basis but before the end of the tapering period I was in no doubt this was the wrong decision without replacing with alternative medication. A visit to my GP confirmed my concerns & he reinstated the steroids & told me to continue the NSAID prn to ease my symptoms until my next Rheumy appointment in July.
I do hope once you're sorted your hearing & eyesight return to normal. FYI when I was on hydroxychloroquine I had to have regular eye tests at hospital to keep a close eye on any possible changes. Don't know if you were prescribed that but worth knowing.
Hi, nomoreheels - Your experiences with rheumy similar to mine. The only joints he ever examined were my wrists, despite my knees, hips, ankles, elbows being swollen and painful! I have also suffered ankylosing spondylosis for many years, diagnosed before the RA onset by ortho. Consultant. My rheumy totally unconcerned with this, even though I can barely walk now with the awful back/pelvic pain.
I am on the move to another hospital now, hoping for better treatment. My eye problems irreversible, it's uveitis and macular edema. I have to wear dark glasses most of the time now to prevent any further damage from bright lights, and I am now the proud owner of very good hearing aid which I have just been given. Take care, lynda x
I just don't get it, it's not looking at the whole picture is it? I have cervical spondylosis & feel maybe he was also blaming that on my pain as I have little backwards movement & pain in my back & neck & near constant headaches from that. This was diagnosed as part of my RD treatment in Spain.
I'm so sorry your eye problems are irreversible but the new hearing aids are so much better nowadays so at least you won't feel so isolated as I know from my m-i-l who started to withdraw from group conversations until she got hers.
Hope all goes well with your new Rheumy & you start getting the treatment you need. If I don't have a satisfactory meet with mine I think I'll be doing the same.
Yes, I think we should empower ourselves and say enough is enough when we know we are being treated badly by Consultants. We know when it's not working. I must say the consultants I am seeing for eyes and hearing are amazing, why can't they all be the same? I too suffer badly with neck pain and associated headaches, dizzy ness, arm and hands pins and needles etc. we have a rough time with all of this and an understand consultant would be fabulous. Not sure how long I shall have to wait for my appointment. I will be patient !! Take care, lynda x
Hi, my rheumy recently approved me for Humira despite the fact that my ESR is now about 5. His comment: 'I'm treating you, not your ESR'. I do have PsA but the same holds true for RA I'm sure. Loads of people find that their ESR is either low from the beginning or comes down over time without a corresponding improvement in symptoms.
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Hi Postie, your Rheumy sounds very good. Both my eye and hearing consultants have been very critical of the treatment I am getting from Rheumy. They both said the same, treat the symptoms as a whole, not just blood results. Just wish my Rheumy was more responsive. Of course I,now have to live with my devastating hearing loss and eyesight impairment, they are irreversible but may have been prevented from getting so bad. Such is life !! Lynda xx
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You're moving to another hospital - as in you're ditching this rheumy? I went through this process. Getting a new rheumy at a different hospital happened quite quickly but I had to wait 6 months for the appointment, I think they arranged it in line with when my old rheumy would have next seen me.
The move was stressful - you always fear more of the same, or worse - but so worth it. If you're undecided about where to go / who to see as yet then message me & I'll let you know which hospital I go to in case it's close enough to you.
It's a shame all Rheumys don't have the same attitude. Mine had same the philosophy & didn't treat off test results, scales & scores. These of course were markers but he looked at the whole picture & changes, good or bad, from my previous visit & meds altered accordingly, particularly with steroidal treatment. As they were 3 monthly appointments there was far more control. Now, with 6 monthly ones I'm left somewhat to cope on my own & told to see my GP if I have any problems.
I was told I was in remission and rheumy withdrew my meds. What a disaster. It's taken 6+ months to get back on to biologics and I'm still waiting for them to have an impact. I tried to fight this decision but couldn't because of communication walls and delays with MRI scans etc. a more gradual approach would have shown that it was medically induced remission.
Have lost a lot of faith in medical profession
Cathie, I know you have been suffering because I have been reading your postings over the past few months. I have been getting similar from my rheumy, only he could not be bothered to tell me himself, I received a curt letter. Mine was obviously the same as yours, medically induced because all hell was let loose when I came off MTX.
I am waiting to move to another county to see new rheumy (my sister who also has RA sees this one and I have been so impressed when I have been on some of her appointments with her). I should have made this move long ago. Meanwhile I am left with visual/hearing damage because of auto immune illness being untreated, I have been let down for sure.
I hope you will feel better soon. Keep fighting your corner Cathie, we should not have to do this I know, we should not be treated like this. Lynda x
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