Hello I got a letter through this morning from my rheumatologist asking for the rheumatologist nurse specialist to see me and calculate a scare to see if I qualify for anti-TNF treatment? does anyone know what this is or can explain it to me as google doesn't really explain it well lol!
I'm already on methotrexate and sulfasalazine.
It’s called a DAS score . They check swollen and tender joints. You need a score of 5 and over. Personally I hate this as the days you get tested could be a relatively good day so a lower score and the days your bad there’s no chance you will get them to see you . There is an app that you can use to test your own score. I used this as evidence of activity.
I disagree with DAS and have always said so to my rheumys! Some agree!
DAS score fails for people like me who never have high CRP or ESR - even when joints are clearly swollen, fatigue levels high etc... I’m not alone in this
My CRP is never high (during a bad flare it might go up to 1.5 but usually hovers around 0.5) but I still scored over 5 in my DAS score for biological. Still often score around 4.5 when due for next Rituximab. The scoring is weighted more towards the number of swollen or painful/ tender joints. Is the nurse doing the test properly? They are supposed to press the joints (especially the finger joints) quite hard to see if they are tender.
The nurse will assess your joints and ask about your other symptoms. A DAS28 score will be calculated using that information and blood test results to see how active your disease is. (Info about DAS28 on NRAS website). If your disease is very active it means your current meds are not controlling the RA and your Rheumy can apply for funding to introduce biological treatment (e.g. anti-TNF) which will probably work better for you.
They are considering moving you into the Biologics world. Grab it with both hands so to speak 😊 it is a good step forward in treatment. Best not to underestimate anything. If you are aching or have any symptoms at all anywhere or have had them anywhere ... say so... however small and insignificant you may think it is or whether you believe it to be something else causing those symptoms. 🍀👍🏻
Agree
Yessss! It will make a huge difference. I held back and said no I’m too scared (not with my rational and sensible head on!) and then decided I couldn’t go I’m feeling so crap,
I agree with bubblyalex and J1707.Mention all your symptoms to the nurse and don’t hold back. Don’t put a brave face on things, describe how you feel on your worst days.
This happened to me in July. The nurse said that the rheumy wanted to either put me on to triple therapy (by adding Sulfasalazine to my existing DMARDS - Methotrexate and Hydroxychloroquine) or put me on a biologic depending on my score. Mine wasn't very high so she recommended the triple therapy and I was happy with that because I preferred to try that first and keep the biologic as an option for the future. Happily, things are definitely improving so it was the right decision for me at the time.
She will take the results of your most recent blood test (ESR or CRP), then should ask you how you feel on a score of 1 to 10 (over-estimate awfulness!) and then check your joints to see whether they are tender and or swollen. Again a few “ouches” are encouraged!
That all goes in to the calculator and out pops a DAS score which needs to be 5.3 or over. On the NRAS website you can look under DAS (disease activity score) to do your own estimate.
Definitely a few ouches. I’m s- negative so my esr and CRP were always good that’s why I’m not a fan of the DAS28 score. Luckily I had a good nurse who had seen me at my worst and was able to prompt me on a few ouches also I have a high threshold for pain that doesn’t help .
I started anti tnf treatment end of 2012, went straight into remission and still am, no pain relief required at all. According to nice guidelines to qualify you have to of tried and failed on two Dmards, one being mtx and have a DAS score of 5.1 or more in two consecutive appointments around four weeks apart.
Hope the following links explain more.
nras.org.uk/resource/biolog...
nras.org.uk/resource/the-da...
Hi Paula, Can I ask you what anti tnf are you on? and have you seen any side-effects at all? I have heard it can lower your immunity in a certain way, and makes you vulnerable to certain infections such as urinary tract infections etc. My Rheumy recommended Humira but I am still undecided. Opted to go for adding HCQ to my Mtx for now.
I'm on enbrel, I was told a few years ago I was going to be switched to a biosimilsr drug, I challenged this and thankfully was told i could stay on enbrel. A few weeks after starting it I did have a slight cold, well more of a runny nose. Since then I've had a cough twice, both viral ones that were going around and one water infection. Been on it just over eight years now so I think that's pretty good going. I have been very fortunate with all of my drugs and not had any side effects.
I'm currently also taking 10mg of mtx, I had a telephone consultation with my consultant a couple of weeks ago, he told me that 10mg of mtx isn't doing anything for my RA, it's enbrel doing the work. I had the option of coming off it, but mtx does help to prevent your body making antibodies against enbrel. I may decide to reduce it down to 7.5mg next time I see him.
Thank you, that is encouraging. My Dr thinks its a better option in my case considering my age and general health. She also told me that side effects are generally rare. She said she has prescribed it for 100's of her patients and only 2 have had any adverse reaction. Both of those patients recovered fine & are doing well , one had to stop it for few weeks until her UTI cleared. The other switched to diff medication. Plus it will be just one medication instead of 3 (triple therapy). May be I am overthinking this but reading info on Humira website freaked me out a little.
I've got a friend on humira, she's doing very well on it and no side effects. They have to put anything and everything on info sheets about side effects, if you read up about paracetamols you'd probably never take one, but you don't read up about it, just put them in your mouth and swallow. xx
You have lots of good replies already. All I can add is, please don't use Google as your first source of information. The NRAS website has information on all aspects of living with RA. Go there first. It will save you time and worry. God's luck with the DAS score. I am on anti TNF since 2012 and it the best thing ever for me.
Before I was allowed to have Biologics I use Etanercept, ESR inflammation level had to be raised for a certain amount of time. Had to prove you were not responding to Nsaids and I also had to be tested for TB I think also blood tests to see that you hadn't had hepatitis and that you didn't have cancer.Take Care & stay safe.
Ray.
Just to add to others comments. Hopefully the rheumy will be on your side and will nudge it over the line if you're borderline. Mention every little thing and exaggerate it too. These drugs could change your life. I was borderline and my rheumatologist looked me in the eye and said, I'm sure your left thumb is a little swollen isn't it? Not sure it was, but it pushed me over the magic number. I got my life back.
Thank you all for your responses, I've been on methotrexate since October along with 2 courses of prednisolone and now on sulfasalazine, the only thing that has slightly eased my pain was the prednisolone but I'm only on short course and only got a second course because I asked my rheumatologist as when I came off my first course everything went back to being worse again, my right knee is always more swollen and stiff than my left even after my medication and I still struggle to walk even on my meds, and I still get pain alot of the time, so hopefully I can manage to get the score I need to get this treatment because it sounds like it could really change my life and help things, because since having RA I've just become fat and depressed lol!.
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