DAS 28

[Dece]

Morning - does anyone else have this problem. I have very bad RA in my ankles and feet that make it difficult/impossible to walk and yet my Disease Activity Score is low because the bones that are assessed do not include the ankles or feet. This means that I cannot have a biologic medicine because you need a DAS28 score of 5.1 or above. This just sounds ridiculous to me and yet this is the way we are assessed for disease activity. The 28 bones that the rheymy looks at are in the hands, elbows, shoulders and knees. I have written to NICE and am waiting for their reply but do not expect anything to change. Any thoughts?

[Fra22-57]

I know it’s wrong but maybe wince more when examined in other places so score gets increased.we know we need help but need to have this set score .

[Dece in reply to Fra22-57]

Thanks for your reply Fra I'll see what I can do xx

[KittyJ in reply to Dece]

Don’t do that, that is so wrong.

[Dece in reply to KittyJ]

No I wouldn't, they are looking for inflammation anyway xx

[helixhelix]

This is a long running problem. Feet are very difficult to assess in clinic and research showed that long term outcomes were the same when DAS 44 was used rather than DAS. 28. DAS 44 included feet!

However overall long term outcomes for a study cohort is no help for you!

However your hospital is out of date. New guidelines allow biologics with a lower DAS score, which is what NICE should reply to you!

“The NICE RA Guideline states that to be eligible for biologic drugs, patients with RA should have moderate levels of persistent disease activity. This is measured by a scale known as the Disease Activity Score in 28 joints (DAS 28 for short), which must be 3.2 or higher if you are to be eligible for biologic therapy. You must also have failed on two disease modifying anti-rheumatic drugs (DMARDs), one of which must be methotrexate, taken for at least six months, unless it is contraindicated for some reason.”

[Dece in reply to helixhelix]

Thanks much for your informative reply. I'll try again with my rheumatology but he's pretty adamant that I should try sulp with MXT , even though MXT is making me really nauseous. He just wants to decrease the dose and add in the other demand. XX

[Karen12 in reply to Dece]

My department have a habit of making it up. More than once a score has appeared on my letters when I wasn’t even examined. The last time she examined my wrists but didn’t include knees, shoulders etc. I am already on a JAK inhibitor though.

[helixhelix in reply to Dece]

I was on MTX, sulpha and hydroxy very successfully for 8 years - in remission for most of that. I was actually a bit sad when this stopped working as well as it had done and I changed to biologics and MTX as I was very worried about the increased risk of infection.

And with most biologics you need to take MTX as well or you can build up antibodies and the biologic will stop working.

[AgedCrone]

In fact you are eligible for a Biologic drug, if you have failed on 2 or 3 DMards (the number depends on your HA) one of which must have been Methotrexate.

So try asking your rheumy nurse…she will know the rules in your HA.

[Lolabridge]

I agree it’s such a problem when our feet are badly affected by RA as our doctors tend to ignore them. I went in to an appointment in flip flops once so my consultant had no choice but to look when I stuck my feet out!

If your feet/ankles are swollen and/or deformed I suggest you take photos and send those to him/her and ask for a proper examination. Perhaps your GP could support your case and request your consultant reconsider since you are clearly suffering.

[SteveSi]

My feet and ankles were often bad (as well as other joints) - JRA M70. After I retired, I bought a bread machine and started making and eating a lot of delicious home made bread. However, I noticed that my feet/ankles then became really bad the next morning when I could not even walk for about 2 hours after getting out of bed. I now am on a 'grain free' diet (all grains not just gluten free) and I have had no joint pain or flare ups for over 6 years. I have stopped taking all NSAIDs now and I don't have painful joints (though I still have to limit my activity to 30-60 mins a day). Some peoples RA may be triggered by ingested substances (food/dink/chemicals, etc) so what you are exposed to the previous day often results in joint pain the following morning. After going on a grain free diet, my bloods are now normal.

[Rainyda in reply to SteveSi]

Thx for the info! I have RA, and on biologics/hydroxy. My numbers are good. Still, my feet/ankles are are very painful. Also, now having knee problems. Been told my RA is under control, and my problems are osteoarthritis! ?? (Canadian)

[BoneyC]

A few years ago a nurse saw me in Rheumatology Clinic, I sat there with a jacket on and yet her letter to the GP gave a DAS score. She never examined me! All she might have seen was my hands from a distance. DAS scores IMO don't give the true picture.

[Seatgeorge]

Not sure why they don't include feet as they have small bones bones as fingers do so I can't see why RA can attack and inflame wrist and hands and not feet, very odd best discuss with your consultant I'm sure they can explain it to you. With regard to bio jabs the rule of thumb is if you fail on a couple of drugs like mtx and another this opens it up to being offered a bio drug, well that's happened to me, I must admit hands and wrists have been great since then,good luck.

[Flipper12345yellow in reply to Seatgeorge]

As ra often starts with small bones in feet it really doesn't make sense not to include them in das score imo

[virtualreality]

Yes this limit to the DAS scoring system is very hard to understand as a patient. However, since your symptoms are bad in your feet and ankles this shows active disease that is not being effectively controlled by your current medications, which should be part of clinical decision-making regarding your treatment pathway as well. My understanding is that biologics can be offered where the DAS is 3.2 or above, particularly if you have already tried at least two DMARDs and they have not controlled your symptoms sufficiently and/or are leaving you with a poor quality of life. Could be worth discussing again with your rheumatology team and asking for all of these aspects to be taken into consideration. I really hope you get the treatment you need.

[Hisue in reply to virtualreality]

Not including the feet in DAS scores makes no sense- since RA typically does much damage to hands & feet. Come on, rheumatologists- revise your assessments. Most of the RA damage I have is in my feet & ankles-but I have to force my rheumy to look at them & I need them to walk! (USA)

[MerielPB]

I know how you feel. Rheumatology class me as in remission but the pain I feel every day doesn't feel like remission to me. I would caution you, biologics are not the be all & end all. They are toxic drugs, with some serious side effects. My first one gave me vasculitis. The second gave me a brain haemorrhage, which the medical profession denied until they were blue in the face. My current one, as I have said, puts me in remission but I am still in constant pain & take serious amounts of painkillers every day. As the saying goes, be careful what you wish for.

[Nyreedw]

My rheumy nurse said feet usually mimic hand damage but will also hurt more because of how much we are on our feet. You can't fake scores as inflammation can be felt so just saying more won't work. I have high pain threshold and don't wince when felt plus take minimal pain relief even when bad, but rheumy can feel it when touching. We have hands and feet regularly xrayed.

[AnnieJ123]

Think of the reasons why you have been declined. One is financial and two is side effects. I had RA aged 28 and was in my mid 70s before given biologicals and yes my hands feet and elbows are deformed. Throughout those years I ate well, exercised as much as posible. never missed a day off work through RA apart from 4 weeks for foot surgery, despite a stressful job and poor sleep due to pain. I tried to stay positive. If I could turn the clock back, I would not have pushed for stronger drugs earlier as drugs have side effects. Do what you can to keep yourself well. I was in your situation 30 years ago where my feet were so deformed that it was impossible to find shoes to fit which did not cause agony. I had total foot reconstruction in both feet at the same time. Off work for 4 weeks plus 2 weeks of my holiday. The surgery was wonderful. The recent biologicals help my RA but my immunity is poorer. Be careful what you wish for.

[BillyJayDuncs]

Good luck finding a treatment that suits you better - I really hope they can suggst a different option soon. I can completely understand your frustrations - I didn't realise they didn't include feet. It seems bizarre.As someone who is 17 years into the joys of my RA journey, I am only just been about to start a biological. I have tried to be proactive with my general health and fitness, continued working etc. but that has not been without lots of pain, stress, impact on my family, sleep etc.

Being careful what I wish for, as a couple of responses have suggested, doesn't feel particularly helpful. Just a bit judgemental in once comment! We are all different and affected differently by this. But I don't think anyone is enjoying having to deal with the pain, swelling and other debilitating complications. Any medication that may be beneficial is worth a try in my book.

Sending you positive thoughts Dece.