Feet are already permanently damaged

[ChillySwimmer]

I was diagnosed with RA 4 years ago and after more than a year of being on and off different DMARDs, I was put on Benepali, a biologic. For 14 months I felt almost back to normal, but in March my symptoms started coming back. I mentioned it at my routine appointment in spring, but I was just told to go to my GP and ask for an analgesia review. My rheumatology team say that the Benepali is still working, but admit that pain in my jaw/TMJ generally means the disease is active.

A few weeks ago they referred me for x-rays of my feet. I've had a call today to tell me that the x-rays showed my feet have permanent 'wear and tear' damage, and this is attributable to the RA and the fact that I walk for exercise.

I'm so upset about this. I knew from the start how serious this disease is and how important it is to get on top of it early. I had a GP appointment within 2 weeks of initial symptom onset, and I paid initially to see a rheumatologist privately so I didn't have to wait months to start on a DMARD. I was led to believe these drugs will halt the disease in its tracks and prevent permanent joint damage. It seems that either they don't, or that delays in my treatment have been enough to let the disease cause this damage.

Sorry to rant, but I'm fed up of being in pain every day and extremely upset that there's now permanent damage, and I just need to vent a bit to people who will understand. Thanks for reading.

[Neonkittie17]

I’m sorry to hear this. 🩷 I was an athlete and fell walker and had to change my activities. The osteo damage happened early on but that was due to RA not showing up in my bloods for 9 months and joint damage happening early on.

Maybe the rheumy will add something in alongside Benepali? If you catch RA very early it is possible to halt it in its tracks/control it, and prevent osteo damage. I would try see an NHS rheumy physio, and a podiatrist/orthotics specialist helped me re the osteo in my feet and I hope you can get similar assistance and also chat with your rheumy team re the level of damage and their advice Good luck and it is indeed very hard to accept. I know this. 🩷

[ChillySwimmer in reply to Neonkittie17]

Sounds like you're in a similar boat then. I used to be a triathlete (not a very good one, granted, but I enjoyed it). Now swimming is the only element I do, and even that makes my shoulders hurt. I was really surprised to hear that walking might have caused problems, especially as I'm pretty conservative with the distances. It's so frustrating, and it sounds like you understand this.

I'm already being referred to podiatry at the hospital. Hadn't thought of physio though. I will ask about that. Thank you for the suggestion and for understanding.

[Neonkittie17 in reply to ChillySwimmer]

Hi and apols for the delay. Not been online so much over Christmas. I’ve had to adapt and there have been some bleak times since diagnosed in 1995 but also good ones and I decided to return to studying and give up working full time. I had to give up running but the way RA got me so hard at first, I was just glad to be moving tbh. Everyone is different re the (initial) joint damage it does and how soon before you find a med that works enough to control RA and hopefully prevent joint damage. I’m glad you will see a podiatrist as supporting feet and ankles with good footwear and orthotics is really vital as to what you can do and achieve.

Seeing a good NHS physio too is of importance as they can help you with the right exercises to gain muscle back under your feet for example, as you can lose your fat pads underfoot. Walking becomes so painful with very little cushioning underfoot. Also, doing strengthening exercises on your ankles and knees and thighs is all of great importance as those muscles in the upper legs and knees push you up from being seated. Ask your rheumy team if there is hospital rheumy physio they can refer you to. It was what changed so much for me in my initial recovery. I’m not saying you’ll be back as you were as I feel that’s really unrealistic for so many of us, but trying to be as mobile and fit as you can under the direction and advice of a physio/rheumy expert is important, I’d say. Will enable you to do more.

See if you can get some hydrotherapy pool sessions via the hospital. They’ve always helped my joints keep moving. I got very toned and muscular doing hydro/water exercises I used to do weights in the water and jog round the pool perimeter for 20 mins non stop., so you can get some cardio exercise/fitness and then some individual muscle work. Always best if you’ve had some physio advice for the hydro sessions. I hope you can sort your RA med out and get back in control of the RA. 🙏

[ChillySwimmer in reply to Neonkittie17]

Thank you so much for all these ideas. I'll definitely ask about physio. They must have somebody at the hospital, I'm sure. If not, they definitely have occupational therapy which I went to when my hands were first stiff, and that was more like physio than I expected.

I hadn't thought about hydrotherapy, I suppose because I already swim (and that's very good for getting relief from foot pain, even if only while you're in the water). I have no idea whether it's an option, but I can certainly ask.

Thanks again for the ideas and the dose of ever so gentle realism, and wishing you a happy new year! PS love the cat picture. I have a tuxie as well, and he's very good at insisting I rest my body.

[Runrig01]

I have ankylosing spondylitis, and I’ve been on benepali and methotrexate for the last 8yrs, as well as steroids. My rheumatoid said all these meds can do is slow progression, but nothing halts it. I have fusion of my sacroiliac joints and ribs, so have no chest expansion. Most with AS just have spinal symptoms, but mine literally affects every joint in my body. I had surgery in February on my toes which were subluxed due to tendons stiffening and pulling toes out of joint. I’m due to go in again for further foot surgery, then they’ll look at doing the other foot. Both my kneecaps are subluxed and don’t sit in their tracks. Elbows, shoulders, even hands, all despite being on this cocktail of meds. I’ve had repeat MRIs which although there is still inflammation, it’s not significant enough to warrant changing my biologic. The benepali doesn’t help peripheral symptoms of AS, which is why I also take methotrexate. Things are still better, than before biologics were an option, and things progressed quicker. I had to take ill health retirement 7yr ago, and am thankfully able to pace myself.

My rheumatologist is similar to yours, when I initially complained about my hands and feet, he refused to look till I seen gp. Thankfully I’d already seen the gp, who said the fact it was bilateral, with no injury to explain it, suggested it was systemic. He was skeptical, but ordered an ultrasound, which confirmed it was my AS. It’s ridiculous that a specialist in joints, would refuse to examine and send you back to the gp. You should contact your team, and see if they can add anything to help you out. 🤗

[ChillySwimmer in reply to Runrig01]

That sounds awful. The condition, I mean. Frustrating about the specialists fobbing you off like that, and there's definitely a lesson for me to take in being persistent. Not that we should have to be. It's frustrating the way they don't take feet seriously and keep sending us backwards and forwards. I'm sorry you've had to deal with this.

[Sebastian247]

Sorry to hear about your feet diagnosis. I understand why you'd be upset. I was also under the impression the drugs, if working stopped joint damage. I thought that was the whole point in taking them.Having said that my feet have changed shape over the last year or so, to the extent I've had to stop wearing my usual work boots to avoid discomfort.

I have an appointment this week with a rhuematology consultant and was thinking about mentioning it. Given your news I definitely will now.

I assume you'll be referred back to rheumatology with these results? I'd hope so, with the aim of trying to prevent any further damage?

[ChillySwimmer in reply to Sebastian247]

My feet changed shape as well - the right one about a year ago, and the left one a couple of years before that. Although they are saying that there's less damage to the one that was problematic first. Definitely mention it, especially as you've already got an appointment coming up.

I'm being referred to podiatry and a foot surgeon (who I'm told is more likely to do an injection than actual surgery). And I'm getting an ultrasound on my hands and feet. I don't know what will happen after that. I guess it depends on what they find.

[wilbertjellyfish]

I was told early on the walking would not cause me any increase risk of damage. I'd question wether the changes are due to RA or just normal wear and tear....I'm not sure they can really tell. However there are medications , good insoles and finding the right footwear doesn't mean your walking days are over.

[AgedCrone in reply to wilbertjellyfish]

I think we are all different with the amount of discomfort we can cope with in our feet. ….Some just soldier on trying different types of footwear & painkillers & others may turn to some sort surgery…but there are so many different reasons ….wear & tear is often cited as a reason ….so there is no one proven solution is there?

As my foot surgeon said “If you were my Mum I’d leave things as they are”!

[wilbertjellyfish in reply to AgedCrone]

To be fair foot pain is awful..mine are settling down but I had a few weeks there of the tops of my feet being really sore. Worst bit was no one was that interested, thankfully better now.

[ChillySwimmer in reply to AgedCrone]

You're so right! My sister once spent a week walking around on a broken foot, and said that giving birth made her "screw her eyes up a bit" 🤣 Not entirely convinced we share any generic material, as I am such a wimp when it comes to things hurting.

[purplecyclist in reply to wilbertjellyfish]

I have been told this about my feet too, walking would not increase risk of damage and I am always puzzled by how the OT is very stern about joint protection techniques with my hands. Why such different rules for feet and hands?

[wilbertjellyfish in reply to purplecyclist]

Not surprised..although I have never been referred to OT or anyone and my hands really aren’t great. Still my feet are ok ..at the minute.

[purplecyclist in reply to wilbertjellyfish]

Strengthening and stretching of Rheumatoid Arthritis of the Hands, SARAH exercises are what the OT showed me. I don;t have an online version of the sheet unfortunately.

[ChillySwimmer in reply to purplecyclist]

I had access to the SARAH exercises a while ago. Maybe I'll look them up again. Good shout! Feels like my life is being slightly taken over with these sorts of exercises. Maybe I should make them my new hobby for 2025.

[purplecyclist in reply to ChillySwimmer]

they take about the time for one tv episode

[purplecyclist]

I found it really helpful to talk to Ali from the walking Hub in Kington and to listen to her inspirational talks on NRAS website. She has permanent damage from RA in her feet and it does not stop her from walking. Thanks to her I have got new walking boots that work for me and I am back to walking fairly normally again.

[ChillySwimmer in reply to purplecyclist]

Thank you, that's really encouraging 😊

[bpeal1]

I too have had secondary Osteoarthritis as a result of RA in my feet. I would strongly recommend asking for a referral to a podiatric surgeon if your hospital has one. They are real experts in feet. Mine kept me going for years with a combination of steroid injections and custom made orthotics and then I had very successful surgery. Despite their name surgery is not the first option they choose (unless there really isn’t another alternative!) so don’t be put off by that.

[ChillySwimmer in reply to bpeal1]

Thank you. They have already said they will refer me to the podiatrist and the foot surgeon. Must admit, the mention of the surgeon freaked me out a bit, but they said that an injection into the joint is likely to be what they try in the first instance. Thanks for the reassurance!

[purplecyclist in reply to bpeal1]

I also was offered to go to be referred to surgeon for my feet but I did not reply as I assumed surgeons just want to get their scalpels in to me. Thanks your reply is really helpful, maybe will reconsider now.

[bpeal1 in reply to purplecyclist]

Orthopaedic surgeon’s are good and will know about other options too but if you have one in your hospital podiatric surgeons are the real feet experts. Unlike orthopaedic surgeons who start their training as general medical students they start their training as podiatrists and spend their whole career and training specialising on feet.

[spartacus101]

I can appreciate your frustration at finding out that there is permanent damage after taking prompt action. I have had RA for nearly two years and now seem to have a permanent limp that limits my walking and poor grip in my dominant hand. I do wonder whether that because you have to guinea pig the cheapest drugs first there is a longer term trade off for some in permanent damage. I did overhear a new consulant saying that they had asked higher ups if they could prescribe a biologic in an early medication mix and was told no. I also don't understand why ankles are not inclued in the DAS score as mobility is so important. I hope you find the combination of advice and support that gets you on yur feet again.

[ChillySwimmer in reply to spartacus101]

Thank you Spartacus. My take on their ignoring feet and ankles is that it's probably too complicated. By the age many of us are diagnosed with RA I think a lot of people already have some kind of foot or ankle trouble from injury or non-RA wear and tear. Perhaps it's just not worth trying to disentangle one thing from another when you can get a clearer picture of RA activity through looking at hands. Still, mega annoying, because as you say, it's so important. It will only end up costing the state more in the long run if we become disabled and require carers, not to mention our quality of life.

Lots of people get good results from the more traditional DMARDs and control their symptoms well for many years. I understand why that's the first thing they try. But I totally feel that frustration of the delays causing us serious physical problems. It sounds like your RA has been quite active already. Unfortunately we do have to advocate quite strongly for ourselves sometimes. Don't feel guilty for doing that, because time is of the essence.