Remission : Hi all How does one know if one is in... - NRAS

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Remission

Gitaga profile image
17 Replies

Hi all

How does one know if one is in remission. Are there specific tests and markers to look for?

Thanks😎

Regards

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Gitaga profile image
Gitaga
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17 Replies
helixhelix profile image
helixhelix

It’s a bit variable. For a lot of people it’s quite obvious as your inflammation markers go back to normal and you stop being in pain!

For others it’s not a clear-cut as the active disease might have left some damage which causes pain and your inflammation markers may naturally be low or high, so changes don’t tell you much.

To me it’s how I feel. If I feel ok then I am ok!

Gitaga profile image
Gitaga in reply to helixhelix

Thank you. 🙏

MadBunny profile image
MadBunny

My rheumatology nurse takes several factors into consideration, to arrive at what is known as a DAS score - this then determines if I'm in remission. I can't remember what the threshold for remission is, but I think there may be something on the NRAS website about it? I have to fill in a questionnaire about pain, how I perform everyday tasks etc and rate each answer numerically. She also checks each of my finger joints for swelling/ tenderness/ pain.My CRP reading is also taken into consideration.

Gitaga profile image
Gitaga in reply to MadBunny

Interesting. Thank you. 🙏

stbernhard profile image
stbernhard

Hi Gitaga, for me it was just a feeling of no pain and not thinking about having RA on a daily basis. A very low DAS score was the clinical confirmation.

Gitaga profile image
Gitaga in reply to stbernhard

Thank you. 🙏

Fra22-57 profile image
Fra22-57

My blood results must of been good as my rheumatologist doesn’t examine me.He just sends a letter to my gp and a copy to myself.At the time I was still in a lot of pain.Next letter said differently so guess we can jump in and out of remission

Sheila_G profile image
Sheila_G

I am in remission and was told by Rheumatologist that there needs to be 3 or less joints affected and my DAS score is now very low but obviously must remain on mxt as without it everything will go to pot.

MadBunny profile image
MadBunny in reply to Sheila_G

Yes I'm technically in remission- have been for quite a while now- but I'm still on my meds too.

Gitaga profile image
Gitaga in reply to Sheila_G

Thank you 🙏

nomoreheels profile image
nomoreheels

Hiya Gitaga. Well, there's medical remission (controlled on meds) & natural remission. Both should feel as near normal as you were before you had symptoms & were diagnosed, that's the theory anyhow.

Otherwise, though I'm not sure of the guidelines where you are, but here our Rheumy performs (or should) at each clinic visit something called the DAS score (28 joint points). It should be explained when he does it, at least the first time. This score is made up of number of him counting the number of swollen joints you have, the number of tender joints (by palpating them), your ESR &/or CRP level & your estimation of the pain you are in (VAS score). This is something that you may have been asked to score yourself on, a VAS scale (Visual Analogue Scale), usually choosing from 1 to 10 (sometimes 1 to 100), where you estimate your pain to be, 1 being least pain & 10 being most. As this forms part of the DAS score if this has been asked of you then you know your Rheumy is performing the DAS 28. The scores are then worked out by a formula & he arrives at a final score. These are <2.6 remission...... <3.2 low disease activity...... between 3.2 & 5.1 moderate disease activity & > 5.1 high disease activity.

He then compares this score to your previous one & if it shows a decrease in score of 0.6 or less it's considered to show a poor response, whereas decreases greater than 1.2 points indicate a moderate or good response, dependent on whether your score at the end point is above or below 3.2 respectively. So, if your DAS score is lower than 2.6 you are considered to be in clinical remission. I see it as a guide only, it can't be foolproof as there are some of us who may not be able to determine exactly where our pain is on the VAS, & also, as in my case, my ESR/CSR scores aren't reliable, not indicative of actual inflammation.

I hope at least some of this helps. If you're not sure if you're being examined properly do ask your Rheumy to explain how he knows your current disease activity state, better from the horses mouth so to speak.

Gitaga profile image
Gitaga in reply to nomoreheels

Thank you for that detailed explanation. 🙏

Neonkittie17 profile image
Neonkittie17

I’ve had RA over 26 years and was told originally there is no remission without meds. The rheumys said they didn’t like to use the word remission as it gave patients the idea it wouldn’t return at all. A very prominent and senior rheumy I saw for over 20 years said it’s medically induced remission if you want to call it that but as soon as you stop your meds it will be back at some point. I was told your RA is under control when you don’t have RA disease activity causing inflammation above what they consider acceptable on your med - for example, my med is supposed to bring your CRP under 5 to be considered the success they want it to be. Also some people can have a higher inflammation result and not have any visible inflammation and feel great, so it’s difficult to judge just the blood results, but that’s how it was told to me.

Gitaga profile image
Gitaga in reply to Neonkittie17

Thank you

EmmaSpicer-NRAS profile image
EmmaSpicer-NRAS

Hello Gitaga, thank you for your question. Some great information from other HU users below! There's also a page about remission on the NRAS website here: nras.org.uk/resource/remiss...

Gitaga profile image
Gitaga in reply to EmmaSpicer-NRAS

Thank you 😘

Gitaga profile image
Gitaga

Thank you all for the suggestions observations and advice. I have been off my immunosuppressants for 5 weeks. I took my first dose of the Phifer vac 4 weeks ago. However, I continued with prednisone daily.

Except for my wrists and knees. I actually feel fine. Even my kidney function improved slightly.

My CRP levels were normal. (on the higher end, though).

All this improvement and without immunosuppressants.

I suppose after the second dose of the vac I will have to retest and see.

Thank you

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