rheumatoid arthritis question

[remission]

how do they test to know if the medication is working or if the disease has gone into remission or getting worse, is the only way MRI…thanks

[nomoreheels]

It's what the DAS 28 is intended to do. Usually at your Rheumy visits in clinic he or examines you & asks you to do something called a VAS score, this is where you score yourself from 1 to 10, sometimes 1 to 100, on how you feel pain-wise, the lower the score the least pain. This is part of the DAS28 score (Disease Activity Score) which also involves examination of your joints & your latest ESR. These are then calculated using a particular formula to give you a score as detailed below

A score of less than 2.6 - remission… 3.2 - low disease activity… between 3.2 & 5.1 - moderate disease activity & 5.1 or higher - high disease activity.

A decrease in your previous score of 0.6 or less is considered a poor response, while decreases greater than 1.2 points indicate a moderate or good response, dependent on whether your DAS28 score at the end point is above or below 3.2 respectively.

A far more basic way is checking your inflammation levels on drug monitoring blood tests. If the level is decreasing then you may assume you are responding to treatment well. The problem is if you have a spike in inflammation levels this may be due to other things, an infection of some kind or stress, not necessarily that you're not responding as well as you have been.

I hope this helps.

[Shonkie in reply to nomoreheels]

how interesting, in 12 years with my rheumy I have never done this, only a blood test!

[helenlw7 in reply to Shonkie]

I have never had it done either - 18 years since diagnosis.

[remission in reply to helenlw7]

some very helpful answers that I have received and I thank everyone.

Was curious s to what medication you are on and the dosage, considering you were diagnosed 18 yrs ago…..and your current condition. For me, it’s my hands are the worse, diagnosed only recently and Dr has me on one 200 mg of hydroxychloriquine one a week, thanks to this site I am going to get back in I touch with her when her office is open again in the new year to express my concerns that this is an inappropriate dosage to for RA

[nomoreheels in reply to remission]

Did your Rheumy discuss the reasons for your dose of HCQ remission, or is it possible your diagnosis is not a definitive one & she's testing the water? I ask as I was diagnosed 14.5 years ago & started on 400 mg HCQ daily so your 200 mg once a week seems an odd regime. Usually the only cDMARD taken once a week is methotrexate. It's not that I'm doubting you, it just seems unusual & I think you're right to contact her, if only for confirmation.

HCQ in common with all DMARDs takes time to build up to be effective but you may notice some benefits before the suggested 12 weeks so if you've only recently started it may not have had enough time to have helped ease your hands. Also, is it confirmed your hands are affected by RD & not OA, that may have some bearing. Usually RD attacks the MCP (knuckles) & DIP (mid joints) whereas OA affects the PIP joints (nearest the nail) but sometimes the DIP joints too.

Let us know what your Rheumy says & if you have any other questions do keep posting.

[remission in reply to nomoreheels]

my rheumatologist ordered a number of test, one I had to pay for as it was not covered, she wanted to make certain of the diagnosis, then she called me in early because she saw my hand results frm the MRI and expected I was in a lot of pain, she could see the damage already done to the joints by RA. She put me on 400 a day for one month and reduced to one a week of 200 and told me it takes some time for it to show results and since I am going south for three months she will. See me when I return. I have chatted with a few on this site and then went in to speak to my pharmacist recently. ( my rheumatologist office is closed til Jan. 3 rd), pharmacist said this Medication is intended to be taken daily and he suggested my Dr could be simply following standard protocol, but in his opinion given RA damage is not reversible, I should be doing the most aggressive treatment right frm the get go to ward to any damage to the joints.

[nomoreheels in reply to remission]

I wonder, are you in the US? Just thinking that may be the difference, you could have different regimes. The 400 mg daily is usual for RD in the UK & Europe, in some cases reducing the dose to 200 mg daily if it's deemed effective, although I remained on 400 mg. It's reducing it to 200 mg weekly that seems unusual. It will take some time to show results at such a low dose. Did the pharmacist suggest it was the standard protocol for RD or as a prophylaxis for malaria? HCQ is a dual use med, a continued once a week dose is for malaria, 400 mg or 200 mg strength dependent on weight. He's correct in telling you that damage is irreversible & it's usual once a diagnosis is made to treat aggressively in an attempt to slow the immune system down, & in turn, the disease down to avoid erosion & damage. Treating conservatively is a thing of the past.

[remission in reply to nomoreheels]

my doctor said she was being agressive, the pharmacist to clarify, was saying that this medication should be taken daily and dependent on weight and the doctor should be giving me the most agressive medication available to stop the damage getting any worse, I am in canada

[nomoreheels in reply to remission]

You really need clarification from her, so I’m pleased you intend getting in rich when her office reopens.

Can I ask, are you what Canadians call a snowbird? Asking with you saying you were going south for 3 months. Forgive me if it’s not the case, it’s just my cousin calls herself that when she & her husband spend the winter away from home.

[remission in reply to nomoreheels]

yes, anyone who needs to get away from our long cold Canadian winters and heads south is called a Snowbird, though I’m in. More of central Ontario, so winters are not too bad, we only have about two feet of snow right now. I lived in the very northern part for five years and wasn’t uncommon to have the thermometer drop to the very bottom and hang there for a month, that plus lots of snow could become very tiring.

Thankyou for all you kind advice. Want to push my doctor to some type of better action, as I agree with everyone here and the pharmacist that this course of action is inadequate.

[nomoreheels in reply to remission]

You're welcome, & thank you for explaining. I'm not sure I could cope with even 2 ft! I certainly couldn't cope with such low temperatures & can imagine it would become tiring. I live by the coast so any snow we get, which is rarely in our area, doesn't last long because of the salt.

Do let us know what your Rheumy says. Can't deny I’m intrigued!

[remission in reply to nomoreheels]

I am hoping I can get to talk to her, which might not be easy, the receptionist is her husband and he runs between Dr Jekyll and mr Hyde, you just don’t know which one you’re going to get.

[nomoreheels in reply to remission]

Hoping for Dr Jekyll for you. 🤞

[Mall in reply to Shonkie]

I only had the DAS scoring done by the rheumatology nurse after I started on biologic drugs. Previously like you the rheumatologist based his assessment on blood tests and examination of joints.

I understand that you have to have a Certain DAS score to qualify for biologics and then DAS is used annually to demonstrate that they are still working.

[Shonkie in reply to Mall]

Ah, I can’t take biologics so that is the difference. Thanks.

[Nyreedw in reply to Shonkie]

They get your DAS score from feeling your joints and what you tell them plus blood tests. They should examine all your joints when they see you. X

[nomoreheels in reply to Shonkie]

It may be you weren't aware. I wasn't for the first few visits, I just thought my Consultant was examining me by palpating my joints & asking if this or that hurt or was inflamed. It was only questioning what DAS44 meant on my copy of my blood result paperwork (mine included feet, ankles, hips, jaw). I also had my RF & anti-CCP value taken each test so I appreciate it was different to the UK.

[Fra22-57]

When on biologics ny 3 monthly blood results is sufficient.It did start monthly then 2 monthly but it has been mainly ok.I didn’t have a face to face this year but am booked in for a January one .I was asked if a telephone one would suffice but refused as am struggling.Not sure rheumatologist will help me as he has never examined me since being diagnosed nearly 13 years ago.When a previous biologic didn’t work he passed me over to the biologic nurses to do the DAS score

[oldtimer2]

I remember seeing an explanation of DAS score on the NRAS website. It doesn't include feet as that was shown not to materially affect management, although i do wish they would pay more attention to my poor old and painful feet!

It's better than just relying on the results of blood tests, which while helpful, don't give the whole picture in many people and tend to encourage health professionals to rely on 'normal blood results' rather than the whole clinical picture (and as I know to my cost, take you off medication....).