RA Bad in Feet - But Feet Not in DAS - So No New Meds

[Jimminey]

I’ve had RA for 5 years and been on sulfasalazine and methotrexate, but the ends of both my feet and all the toes are red and swollen and it’s becoming painful to walk. They have been swollen for coming up to 4 years and the Rheumy doctor is pretty sure it’s RA.

I’ve tried an anti-TNF inhibitor adalimumab (Humira), and rituximab (Trumira) but to no avail. In both cases the rheumy nurses ensured that the DAS (disease activity score) was over 5.1.

The last time my DAS was calculated was by the rheumy doctor, who put the DAS down as 3.98, and put me forward for a JAK inhibitor, Filgotinib, which was refused because of the low DAS.

It would seem that I need another biologic or a JAK inhibitor because of my feet, but because feet are not included in the DAS I cannot get one. Where do I go from here?

If anyone could advise or share experience on this it would be very much appreciated, as I don’t think I am getting the medication I need.

[medway-lady]

Have you been checked for gout ? its just a thought but my friend has it and sounds the same.

[Jimminey in reply to medway-lady]

Thank you for the suggestion. I've seen my GP about them and she didn't think it was anything but RA. Also, although my feet are getting painful, especially after a long walk, I don't think they're up to gout standards yet!

[AgedCrone in reply to medway-lady]

I think the way to get theDAS score up must be to exaggerate the pain in the joints that do count?

[medway-lady in reply to AgedCrone]

It really could be ? its so sad these days its about numbers not actual impact on the person.

[AgedCrone in reply to medway-lady]

Well…factually ..if you feet hurt….you put pressure on every joint when you walk….….so eventually you don’t need to exaggerate!

[medway-lady in reply to AgedCrone]

Lol xx

[Jimminey in reply to AgedCrone]

Thanks, yes, I think that is sound advice. But I would really like to be honest and open in medical appointments.

[AgedCrone in reply to Jimminey]

Of course tell the truth…but if one extra ouch on your elbow helps your score for your feet….cross your fingers &/go for it! Believe me he who shouts loudest gets the treatment.

[Jimminey in reply to AgedCrone]

Ouch! Will do!

[Neonkittie17]

Hi-it-seems-very-odd-they-put-you-on-a-high-level-biologic-like-Truxima(Rituximab-biosimilar)as-you-have-to-be/bad-to-go-on-that. You haven’t got any better so still need RA medication. Can-you-ask-your-GP-for-assistance-here?Or-speak-to-the-rheumy/nurses. I-am-fuming-re-DAS-scores-and-feet. Makes-me-so cross.

[Jimminey in reply to Neonkittie17]

If it was my hands rather than my feet I don't think I would have any problem getting the medication. I did mention the problem to my GP but wasn't offered any advice. Have you had any problem getting medication as a result of the feet not counting in the DAS?

[Neonkittie17 in reply to Jimminey]

No-as-RA-was-widespread-elsewhere.I’m-always-cross-re-no-feet&DAS.🤨

[Leics]

It strikes me that your consultant should put in a report for your overall health and not just the Das score. It’s a difficult situation and I feel for you as I’ve been refused immunoglobulin therapy twice even though my IgG was 3.0 normal low end of the range is 6.0. Luckily I’ve managed to stay reasonably healthy so far but that’s down to me being extra cautious. With regards to your feet I’ve had awful chill blanes this year which have driven me mad at times and it does make wearing shoes and walking very difficult especially as I’m currently on a three week flare. Your GP should do a blood test for Uric Acid to check it isn’t gout which is simple to do and at least you would know one way or the other whether it’s that. I hope you find a solution but funding for anything is very difficult at the moment maybe PALS could help ?

[Jimminey in reply to Leics]

I used to get chill blanes as a kid and they drove me to distraction too! My GP has checked out my feet and both her and the rheumy doctor seem happy with the RA diagnosis. And I've asked about PsA - but the bloods are markedly different. Being refused the immunoglobulin therapy twice must have been very disheartening - did you approach PALS about the refusals?

[Leics in reply to Jimminey]

No I didn’t as to be honest it was supposed to be a lack of immunoglobulin nationally or so I was told as well as the cost. I was quite shocked to learn of the 3.0 this week though as that was in 2019 and no one thought that I should know 🙄 I would definitely have pushed a lot harder had I had that information. Unfortunately it seems that you may have to stand your ground and get an advocate on your side to push the need for biologics. Good luck. I’ve made it clear to my consultant that if my levels go as low as that again I want to know immediately.

[J1707-]

my feet have been the worst problem since diagnosis since I was diagnosed 6 years ago. I was re diagnosed with Axial spondyloarthritis recently which does affect the feet and tendons rather than the joints . Look on the national axial spondyloarthritis it’s very good and it MAY help you to talk to your rheumatologist.

It annoys my the DAS score as inflammation plays hide and seek you could be really bad weeks leading to your appointment then on the day it behaves and the next day it will play up . Personally I take photos and keep a diary and use this to help with consultant.

[Jimminey in reply to J1707-]

Thank you for the axial spondyloarthritis information - I will indeed checkout the website.

I use the notes I make for the 3 monthly appointments as a sort of diary as things don't change much, and I regularly take pictures of my feet using my laptop, some of which I've sent to Rheumy - and if anyone should look at my 'Photos' they would think I was somewhat obsessed, especially as I don't take pictures of much else! Just rows and rows of red shiny plates!

[J1707- in reply to Jimminey]

😂😂I’m the same

[Cassie1956]

Could it possibly be gout? That's what my GP has said about my swollen red toes but I had arthritis many many years before my toes went red and swollen, with the arthritis my toes just went as knobbly and bent as my fingers (it is OA in my fingers and toes). My toes only went red and swollen this last 12 months and I must admit, I was given a 3-day course of tablets for gout and the pain in my toes reduced significantly that I then believed my GP regarding Gout, as I was a real doubter when he first told me it was gout. 4 months on and the pain has not returned (yet) but I have further tablets to take should that happen.

[Jimminey in reply to Cassie1956]

Hi Cassie, thanks for the suggestion and glad to hear that at least your gout can be dealt with. My GP doesn't think it's gout and from what I've heard gout can be very painful, whereas my toes only really hurt after a long walk - apart from occasional shooting pains in my hands and feet to do with the synovitis. But I will mention it at my next appointment. I also get OA, but in my lower back - possibly to do with osteophytes apparently.

[Hairbraid]

hi Jimminey I first started feet problems last may the sole of foot agony I saw my consultant he said was my ra can attack you anywhere in November got to point toes bending yes like you swollen red toes ankles hurt now all feet hard to walk also hard sitting and laying it pulls so I started Orencia Infusion last July my whole body jaw to feet flare swollen now so starting new biological Monday hoping it helps tocillizumab my 7 th different medication nothing worked yet I’d see your consultant again hope you get some ease with it it’s no fun I’ve tried ice heat physio accupuncture but still carries on big hugs 🤗

[Jimminey in reply to Hairbraid]

Hi Hairbraid, sorry to hear about the inflammation and ineffective medication. I've been on methotrexate, adalimumab and rituximab, and the only one that seems to have done anything is the sulfasalazine which I (thankfully) started first - it also cleared up feelings of anxiety, but unfortunately makes me susceptible to food poisoning. I've got an appointment with Rheumy next month, and may see the doctor but probably the nurse, and hope to start a new drug if I can get the DAS pushed up a bit. Good luck with the tocillizumab.

[weymouth321]

Can you have the Rheumy Nurse carry out an Ultrasound on your feet ?

[Jimminey in reply to weymouth321]

Hi weymouth, they are going to do another ultrasound of hands and feet and the outcome will contribute to the decision about future meds, but the DAS still matters a lot apparently...