Well this explains everything!

stlucia

Hello everyone on this sunny morning!

I have just got back from my appointment at the hospital and my DAS score is over 6 meaning that I have severe disease activity....they are now talking about anti TNF drugs. Had a steroid injection and I think I'm going to take it easy for the rest of the day. At least I know why I've found things hard over the last few months.

Funny, as if anyone had asked how bad my arthritis is I would have said it was mild....bother! Need to realign my opinions!!!

Hope you are all doing ok.

x

dreamdaisy

After a steroid jab you should rest for at least 48 hours - that's what my hospital has told me. I always do but they never do much! At least you know that there's a reason for why you have been feeling so rough, but anti TNFs are not miracle workers. Which joints fired up on your DAS score then? DD

stlucia

Hello,

Oh no I was totally expecting the anti TNF drugs to bop all this on the head!

Ah I love it - 48 hours of compulsory rest :-) Great! That will be my husband cooking tonight then! Thanks for the excuse.

Erm I think all my joints except two knuckles were ticked on the sheet. She said that they don't count hips or feet - wonder why that is? They are bad too. It's quite a cool little test.

How are you today?
xx

dreamdaisy

My last DAS score was 31 - it's weird how these things vary isn't it? I was told that meant I had 31 affected joints - I'm off to google now, I'm confused!

I'm on my third anti TNF, humira. The first one I tried, infliximab, worked miracles with its first dose. By the fourth it had stopped working, I had produced antibodies within a few weeks. The second one, enbrel, tried to explode my liver. I spent three months in bed, on nothing, to clear my system of everything. That wasn't fun. I'm now on humira, which has kept my inflammatory markers at very low levels for over a year. The pain, however, has not diminished in anyway, I still have flares, and I'm still taking all the other stuff too, to try and keep on top of it all, ie, meth, sulphasalazine, naproxen, oral steroids, and omeprazole and alendronic acid. I thought, from what my consultant said, that the humira would be all I needed, that I could drop the others. Stupid girl. I'm still on crutches, my walking isn't that good, even with those.

These drugs are given a very good press, and for good reason. For some they are very effective, for others they do something, for the rest they do little. I remember all too well the crushing disappointment of the failure of infliximab. Never again will I put myself thro that. These drugs are a lottery re how effective they might be for one: they don't cure. Nothing does. The majority of the anti TNFs, if not all of them, are based on mouse proteins - the 'mab' bit of the name means 'mabine'. My GP at the time of infliximab reckoned I'm based on cat proteins.

All I am trying to say is don't build your hopes too high. There is no guarantee that these drugs will work: I sincerely hope they do, and if you are given the chance to try one, go for it. You never know until you try. DD

stlucia

Ah that sounds like the number of joints not the score (mine was 28 or something) and then they 'do maths' to it and come out with a score of between 0-10....i think.

Thank you for the very good advice. I am just so sorry that you have been disappointed by the lack of usefulness of the anti tnfs, I will try not to get my hopes up.

x

dreamdaisy wrote:

My last DAS score was 31 - it's weird how these things vary isn't it? I was told that meant I had 31 affected joints - I'm off to google now, I'm confused!

I'm on my third anti TNF, humira. The first one I tried, infliximab, worked miracles with its first dose. By the fourth it had stopped working, I had produced antibodies within a few weeks. The second one, enbrel, tried to explode my liver. I spent three months in bed, on nothing, to clear my system of everything. That wasn't fun. I'm now on humira, which has kept my inflammatory markers at very low levels for over a year. The pain, however, has not diminished in anyway, I still have flares, and I'm still taking all the other stuff too, to try and keep on top of it all, ie, meth, sulphasalazine, naproxen, oral steroids, and omeprazole and alendronic acid. I thought, from what my consultant said, that the humira would be all I needed, that I could drop the others. Stupid girl. I'm still on crutches, my walking isn't that good, even with those.

These drugs are given a very good press, and for good reason. For some they are very effective, for others they do something, for the rest they do little. I remember all too well the crushing disappointment of the failure of infliximab. Never again will I put myself thro that. These drugs are a lottery re how effective they might be for one: they don't cure. Nothing does. The majority of the anti TNFs, if not all of them, are based on mouse proteins - the 'mab' bit of the name means 'mabine'. My GP at the time of infliximab reckoned I'm based on cat proteins.

All I am trying to say is don't build your hopes too high. There is no guarantee that these drugs will work: I sincerely hope they do, and if you are given the chance to try one, go for it. You never know until you try. DD

dreamdaisy

Thanks for the feedback on DAS - now I understand! Yes, I guess at the bottom of it all I am disapppointed. I've got my head round the reality of it all now - bring on the electric scooter! That will make getting home from the pub far easier and I can go to further-flung pubs too! There is an upside to everything. DD

scattered

The most common DAS scoring system is the DAS-28 which takes a count of 28 joints, assessing how swollen and tender they are. Then you complete a global health score (mark on a 10 centimetre line how much you arthritis has impacted on your life for that day/week) and the consultant looks at either your ESR or CRP. THey put all the information into a fancy equation and it comes up with a number between 0-10 which tells you how active your arthritis is. Below 2 and its in remission, above 5.1 and it's very active. The aim is to have the lowest number possible.

Consistently scoring above 5.1 in 3 different DAS tests means that you can then qualify for Anti-TNF treatment, providing you've already been on MTX and at least one other DMARD.

For some reason the hips and feet are not included in the DAS. I was once told the reason why but I've forgotten.

Anti-TNF drugs can work wonders for some people. Humira was the first thing that made any impact on my RA, but wasn't strong enough on its own so I take it with MTX, hydroxychloroquine and prednisolone. Together this combination has lead to my being in medication induced remission.

stlucia

dreamdaisy wrote:

Thanks for the feedback on DAS - now I understand! Yes, I guess at the bottom of it all I am disapppointed. I've got my head round the reality of it all now - bring on the electric scooter! That will make getting home from the pub far easier and I can go to further-flung pubs too! There is an upside to everything. DD

OH my goodness I can see it down - you haring down the road on the scooter after a few drinks.............woah there!!!!!

L plates?!

Tee hee

xxxxx

stlucia

scattered wrote:

The most common DAS scoring system is the DAS-28 which takes a count of 28 joints, assessing how swollen and tender they are. Then you complete a global health score (mark on a 10 centimetre line how much you arthritis has impacted on your life for that day/week) and the consultant looks at either your ESR or CRP. THey put all the information into a fancy equation and it comes up with a number between 0-10 which tells you how active your arthritis is. Below 2 and its in remission, above 5.1 and it's very active. The aim is to have the lowest number possible.

Consistently scoring above 5.1 in 3 different DAS tests means that you can then qualify for Anti-TNF treatment, providing you've already been on MTX and at least one other DMARD.

For some reason the hips and feet are not included in the DAS. I was once told the reason why but I've forgotten.

Anti-TNF drugs can work wonders for some people. Humira was the first thing that made any impact on my RA, but wasn't strong enough on its own so I take it with MTX, hydroxychloroquine and prednisolone. Together this combination has lead to my being in medication induced remission.

Thanks loads - it all makes sense now. Funny it doesnt include hips and feet....

dreamdaisy

Cor, scattered, you surely know your stuff! Do you work in this area or have you just learned about things as they affect you? A curious DD

tkachev

stlucia wrote:

Hello,

Oh no I was totally expecting the anti TNF drugs to bop all this on the head!

Ah I love it - 48 hours of compulsory rest :-) Great! That will be my husband cooking tonight then! Thanks for the excuse.

Erm I think all my joints except two knuckles were ticked on the sheet. She said that they don't count hips or feet - wonder why that is? They are bad too. It's quite a cool little test.

How are you today?
xx

Anti TNF has bopped my R.A on the head.I wonder why they dont count hips and feet. These are my two worst joints yet my inflam scores are really good now. I wondered why these never show up (but a cold does)!

Enjoy the rest,

Elizabeth

scattered

Hi DD.

I read a lot, and ask my doctors a lot of questions. I've been dx'd for four years and I was determined when I was diagnosed that I'd be able to understand exactly what the doctors were talking about. I do a lot of research. It's always helpful to know what's going on, and I can lend a hand to people here too!

tillytop

Hi scattered - very impressed with your DAS explanation cos I've never understood how it works. Not including the feet is a bit odd tho' given that they are so commonly affected - maybe cos there are just too many bones in the feet to count?!!!!! Good luck with the anti-tnf stlucia! Hope it works as well for you as it has for scattered and Elizabeth. Tilly x

dreamdaisy

Thank you scattered. You know a great deal - like you I ask questions and do research - but I'm not so hot at remembering! DD