Im an awkward one.: Hi all Thought I would tell you... - NRAS

NRAS

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Im an awkward one.

Kyriew
Kyriew

Hi all Thought I would tell you about my appointment with my Rhummy nurse Who is lovely and very knowable. So today I was told by her that I am an awkward one. Because my DAS number 4.7 is high but not high enough. She really wants to put me on Biologics (DAS has to be over 5.1) as she feels that this will be best for me. My consultant wants to do the same. So anyway the plan is to try Methotrexate injections and see if that brings the DAS numbers down if not...................... take me off all medication to induce a flare up and then my DAS will go up and I will be in the criteria for biologics. Anyone else been in this direction. She was explaining that there are those that never get into remission so they keep doing what they can to stop it getting worse and then those who are in remission and then the likes of me who are in no mans land as she put it. Typical me I am not telling my mum as she has always said I am awkward this would just prove her point. LOL

xxxx

24 Replies

I was in that no man's land for a while. I have normally very low inflammation markers, so despite 15 swollen and 15 tender joints I could never get above 5 on DAS score. I was on methotrexate, sulphasalazine and hydroxychloroquine and I had major biologics envy! The whole system of qualifying for biologics is medieval and really unfair to some people.

However once I got to max doses of each of these things did improve and settle down and I did go into remission for about 5 years, and completely got over my biologics envy.

Luckily I've moved countries, and in the French health system you just (just!) need to show that erosions are starting to happen, which they are to me now. So now on the road to biologics.

Kyriew
Kyriew in reply to helixhelix

Its funny how things change from country to country . If I lived in America I would be classed as diabetic and also have under active thyroid. Not that I want those, one disease at a time thank you very much. LOL

I like your mum ! I''m in remission but it look a while so stay posative and listen to mum ! lol x

Kyriew
Kyriew in reply to medway-lady

Listen to my mum NEVER. Only joking she is one of my greatest strengths as she knows when Im bad and juts putting on a front. Mums always know best xxx

medway-lady
medway-lady in reply to Kyriew

My son never listens to me as in "are you both mad your climbing Everest ??. That is true he did it in May or "don't eat all my chocolate, buy your own" or " do you actually know where to find the petrol cap on my car when you return it?" or "I don't care, you moaned when I asked you to take your shoes off in the hall at home, now you've got your own house I'm doing what you did and spreading mud as far as I can up the hallway" or "your 6'4'tall and so its not I'm slow because of the RA, but because my legs are half the size of yours" or best of all " Yes, we are at home if your coming over, but to save you the trip lets cut to the chase what do you want to borrow or how much do you want to borrow?" I hope thats made you laugh, as my son is lovely as is his wife and they can really make my day with laughter. xx

Kyriew
Kyriew in reply to medway-lady

That made me chuckle. Sons are a joy I have 2 and now they have given me 2 grandsons. It total payback time now. xxx

My rhem nurse made my score higher than what it was she seen I was struggling it’s abit mean your one can’t do the same if your truly struggling

Kyriew
Kyriew in reply to Vonnie10

I will suggest it next time I see her. Thanks for the idea. x

Vonnie10
Vonnie10 in reply to Kyriew

Suppose it depends on the nurse but goodluck

Kyriew
Kyriew in reply to Vonnie10

Worth a try xx

Hi Kyriew,

So regarding your DAS score, what is there to stop you slightly inflating your personal pain score? I have never needed to as getting and keeping my inflammation and therefore pain under control has been a fourteen year struggle.

I also think that because we are used to living with the condition and pain we tend to 'minimalise' it when filling out forms or talking to the professionals. Many times my late OH would look over my shoulder when filling out the questionnaire about how you manage at home and severity of pain and say you need to tick the next box up.

We do seem to play down the pain as we are living with it and have to try and get on the best we can. You need to keep pushing for the biologics as it took me years to convince my Consultant due to funding. The problem I have is that he also is a finance directorate for the hospital! So I had to keep on fighting for them. If you find the right one it can transform your life so it has to be worth it xxx

Thanks guys . xxx

It was my rheumy who told me that I didn’t shout loudly enough. I had to learn to stop playing down the pain. I obviously succeeded as I have now been on biologics for 2 years and am in remission.

I’m not suggesting you should lie about it - just be more honest about your pain. Good luck.

Kyriew
Kyriew in reply to thelmar

Yeah I think we all do that. Im so used to being in pain that its just part of life . Standard answer is "Not to bad " or "Im fine" xx

I was in the same no man’s land for quite a while but my consultant asked me to stop naproxen to see how much it was reducing the inflammation. It turned out that even a low dose of naproxen has a huge effect - my DAS score leapt up to 5.4 and it was clear that methotrexate, sulfasalazine and hydroxy (at the highest dose I could tolerate) weren’t controlling the RA. I’m now on Benepali as well and doing much better. I don’t know if you are taking anti inflammatories but it’s just a suggestion !

Hi Kyrie

Yes, I was in that position. My rheumy was desperate to get me on biologics, but I rarely show any variation in my blood tests so it was reliant on DAS alone.

Suggestions:

1) They didn't give me any steroid injections for a year.

2) The nurse explained to me that the DAS is for sensitivity, not outright pain, so to say yes to any sensitivity when they they touch each joint, not just actual pain.

Or just lie and exaggerate a bit (my rheumy did hint to do that at one point). If you do that, keep a note of which joints you play up, you will need two DASs above 5 to get the biologics approved, you will need to be consistent.

3) Like Creaky wrists, I stopped taking Naproxen for a few days before the appointment.

Good luck, biologics are wonderful and have given me quite a lot of my life back. Worth a little white lie in my opinion (although things were so bad by the last appointment no fibbing was needed for the second DAS>5 ).

Jenny

Well you might be awkward, but according to the Rheumatologist I am seeing at the moment; I am apparently an odd one ! I am new to all of this but apparently I should have mirroring pain, i.e. In both knees, both ankles both thumbs etc........when I last saw him I had pain in both feet, right thumb, left index finger, left ankle, left knee. Seeing him on Friday , now have pain in both knees, right thumb, left wrist, slightly in left index finger, and right ankle ,just to confuse him more maybe instead of mirroring mine are opposites ?! 😂

Kyriew
Kyriew in reply to Rubyroo1

Oh bless you. Hope the appointment goes well. xx

Hi Kyriew. Much sympathy coming at you. Like you, I scored 4.7 (I think) but lovely rheumy said I would not be getting biologics as I was getting g too many infections. You've had some brilliant advice already so I'll just cross everything for your next assessment. Hugs

J

Kyriew
Kyriew in reply to Gnarli

I think I am pretty lucky I have always been healthy in that respect and never really gone down with infections. Even now the only thing I ever get is the odd cold. x

I've had RA for 46 years now. I'm now 49. Diagnosed at 3 years of age. Tried most drugs on the shelf and have been lucky to have experienced periods of remission. However, I was never prescribed bio meds. As with you my score was always below, even though I was literally dragging myself to appointments. I've probably cost the NHS service more money than 10 patients over the years with the amount of treatment I've had. I would regard myself as a high impact user as I had depo injections every couple of months to reduce pain and inflammation. Only now am I being put forward for bio. My consultant and I had cross words as I felt that despite seeing her for all these years, produced extremely swollen and disfigured joints I was always rejected. All I can say is it's mainly because I'd turn up with an overly positive attitude. I was always told i looked amazing, because upkeep myself slim, so I don't carry the weight on my lower limbs so not to cause stress on them. I wear my make up and make the best of myself. Despite being up all night in pain, I drag myself to work, even though I want to stay in bed as it's taken me over an hour to get myself moving. Sometimes it doesn't pay to put a brave face on. However, I'm sure it'll come good for you. Keep your chin up sweetie and don't give up.

I get what your saying. Hope you get the meds you need too. x

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