The mission to remission

[Andrew-NRAS]

Achieving a low DAS score, being able to perform a certain activity, or just attaining a feeling of general well-being – what exactly does remission mean to you?

Is your idea of remission different to that of your rheumatology consultant/nurse?

You may have heard NRAS talk on this subject a few times and this is because we’ve been working with Roche on a study to discover your views on this very topic. In fact many of you may have completed the survey we carried out.

The study is soon to be published so in order to help promote it, and raise awareness of rheumatoid arthritis as a whole, what we need are some case studies that highlight examples. Ideally what we are looking for are people who have set goals/objectives and achieved them, or have a story to tell about the ‘disconnect’ there is between patient and clinician and so don’t know where they are in terms of DAS/disease progression.

If you think this is something you would be comfortable doing then please let me know. Write down your story in a couple of paragraphs and email it to [e-mail].

Very many thanks!

[Hidden]

Hi Andrew - my email is playing up just now (I got hacked it seems?) so I'm unable to email you currently but am happy to just paste this on here for you to use or not as you see fit.

Hi Andrew,

I thought I would respond to this request - if of no relevance or interest please don't worry - but I'd like to help out if I can.

I have never heard my consultant mention either the terms DAS or remission but, in common with many others on the site, I don't see my consultant very often and have no rheumatology nurse to ask either so have to rely entirely on my GP and my own judgement on this matter.

According to the American College of Rheumatology's definition of RA remission I believe I may have qualified for about 6 months as being in drug induced remission. But according to an NHS consultant rheumatologist I saw in January I still have approximately 30% of active disease. What qualifies as remission seems to vary so much from country to country that I decided to define myself as in possible remission and with that in mind, and with the support of my GPs - I recently gave myself a month's holiday from my RA drugs to see if I could get to the bottom of various potential side effects and find out whether this remission was a drug dependent one or not. The answers have still to be fully established but on the whole I think this experiment was necessary, if quite risky, but I learned the hard way that I do need to keep injecting Methotrexate for the time being in order to retain what I hope to be a state of remission.

The main sticking point in my definition versus my medical team's definition seems to be the ESR - which I feel is normal for me if it's under 30 but which the clinicians I have spoken to feel is not normal and is still elevated at between 26 and 30 - although it is certainly much lower than it was. In the ACR's definition of RA remission the ESR has to be 30 or under but according to the consultant I saw in January - any signs of swollen joints, no matter how painless or limited in number to a couple of swollen knuckles - and an ESR of 26 - suggests remission is still some way off for me apparently.

So there is some discrepancy here and because of the potential for joint erosion from active disease I have had to concede to their definition rather than my own or the ACR's. I also find this a very interesting question because for myself, and many others with RA, I believe our pain thresholds and attitudes to pain vary enormously and also change as we adapt to life with a chronic and incurable disease. Also many people with RA do have the classic hot, pink and swollen joints but some, like myself, do not have this very often and so clinicians rely more on our blood results than with people who have a more clear cut manifestation of the disease. It does seem to me to be a very vague and unclear thing to define - whether or not someone is in remission. And as a fairly practical and rational person I find this uncertainty and lack of clarity in the way my RA manifests itself extremely frustrating - and so I have learned to judge my own disease activity score by how well I'm feeling in general - in the absence of any better criteria or any mention of my DAS or the term remission from my medical team to date!

I hope this helps with the NRAS "Mission to Remission" study in some way.

Best wishes,

Tilda

[Andrew-NRAS in reply to Hidden]

Hi Tilda,

Thanks for that. Would you be willing to contacted by the person managing this campaign to go into a bit more detail on your story?

[Hidden in reply to Andrew-NRAS]

Yes happy to be contacted in person Andrew - I know NRAS Leo and Victoria have my personal contact details so please feel free to get in touch. Tilda

[Hidden]

Hi Andrew,

I've already emailed you my story a while back.

However I just thought I would add here, after me failing on sulfazalazine, rituximab, tocolizimab, enbrel and methotrexate don't reduce my DAS enough on its own, I was prescribed cimzea the other month.

I at the time spoke to my RA nurse and explained that even though previously the tocolizimab had reduced my ESR ans CRP but caused a major allergic reaction so I couldn't continue, I explained that even though I had seen a big reduction in my bloods after the tocolizimab I had still had morning stiffness for over an hour, still had daily pain my joints were still screaming at me and fatigue etc was still very bad.

My nurse explained to me that because off my RA being active and relentless from pain etc that I should be realistic in my goal for cimzea treatment and the goal that she has set is that my DAS gets to 4.9 which I maybe wrong but still seems high.

I thought a DAS off around 2 was remission, so I take it my rheumatologist doesn't expect me to get remission from my RA which is very disheartening as I've been hoping all along for that, and that's part off what keeps me fighting through.

I know 4.9 would be low for me as a DAS as I've been 7.8 on previous tests.

I would be very interested to find out what others aims have been when starting anti tnfs or any other drugs for RA.

Thanks

Julie x

[Andrew-NRAS in reply to Hidden]

Hi Julie,

Thanks for that, I think it was a different campaign your previous response was for (we often have several on the go) but if you would like to tell your story for this one too then that would be great. Would you be willing to contacted by the person managing this campaign to go into a bit more detail on your story?

[Hidden in reply to Andrew-NRAS]

Hi Andrew,

Sorry my mistake, however yes as always I'm willing to be contacted anything that can help in any way

Julie x