RA and feet: Found I can hardly walk since been off... - NRAS

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RA and feet

Amy65
Amy65

Found I can hardly walk since been off biologics .was on 7 different types over 14years rheaumtoglist said I'm at end of line with biologics put me on but an patches not much help review Nov.paid private to c foot clinic my toes are all curled in arches are agony .podrist recommended insoles to help feet so bought them off her she said it's the ra in feet not a lot can be done cost me 125pounds 50 for appointment and 75pounds for insoles still no better any advice gp 2mmorow but 1 that dosent know me all I could get amy

37 Replies
oldestnewest

Sorry to read about your mobility problems Amy. How long have you been off Biologics? End of the line? They can't give you anything else? Suzie x

Amy65
Amy65 in reply to Shalf

Hi Suzie I have been of biologics since April. Was ment to c rheaumtoglist in May he was fully booked so they left me till middle of Aug till I saw him .think cause I was just back from holiday I looked to well so he just gave me patches .been reading up on ra treatments he should of tried Jan inhibaters tablets .I'm due at eye clinic at hospital gonna c if my eye consultant can email him .they work together with my care as I also am visually impaired and have anklossing spondlittis so bit complicated lol thankyou for ur reply

helixhelix
helixhelix in reply to Amy65

I think this is the drug you were thinking of? Sounds promising for AS, so maybe ask your rheumy directly if he would give it a try with you?

ankylosingspondylitisnews.c...

Amy65
Amy65 in reply to helixhelix

Thankyou helixhelix that's the name appreciate it amy

Nsmith13
Nsmith13 in reply to Shalf

Hi suzzie been hospital had my bloods taken as usual goin to try me on leflunomide nxt as I've tried a mtx benapali no more bio so it's a tab don't have to inject so just got to wait an see now hope your ok see Nettie back x noz

Shalf
Shalf in reply to Nsmith13

Hey, so back on the ladder for you now. Really hope it's a success. I was on Leflunomide for a while initially added to mtx and hydroxy but made me very sick. Likely the cocktail didn't quite mix! We're your bloods ok? Yes, Nettie back, not been feeling too good and Sylvi away to Scarborough X

Nsmith13
Nsmith13 in reply to Shalf

I've got to wait for my bloods I've felt sick on other meds got anti sick tabs so it's fine just glad I don't have to start injecting again was offerd that infusion but I said no and

Just get steroids down

Shalf
Shalf in reply to Nsmith13

You were having no nonsense today by the sound of things :) Quite right too! Always a wait eh! X

I know how you feel. My toes curled in quite badly during a 2 - 3 year abstinence of RA meds. My feet are so painful that it's difficult walking even short distances. Following my spell without meds I've recently started back on a new med, which is helping with most joints, but alas has seemingly no affect on my feet. :-( Currently wearing a lightweight, supple chukka boot (Skechers) with memory foam inners, which I find to be better than orthotic insoles. Think I'm resigned to the fact that other than surgery, there's little that can be done to help my feet.

Amy65
Amy65 in reply to wishbone

Glad to hear u got meds that help us ra .might try it idea 're boots thanks amy

wishbone
wishbone in reply to Amy65

I'm a male, so the big bad chunky chukka man boots that I wear might not suit a female. ;-) However, fear not, as Skechers have a zillion different types of footwear for both sexes to choose from. :-)

Seriously though, I find the memory foam inners a sight more comfortable than orthotic insoles and the leather uppers are really soft and supple.

Amy65
Amy65 in reply to wishbone

Lol yea bet their a lit cheaper than the orthotic in soles too didn't expect a bill like I got take care amy

wishbone
wishbone in reply to Amy65

Obviously prices vary for different styles. I paid £75 for my boots.

helixhelix
helixhelix in reply to Amy65

£75 for insoles isn't that much - my first pair were over £300 as had to have casts made of my feet to get them right.....

Amy65
Amy65 in reply to helixhelix

I wouldn't mind if they helped but didn't done anything .gosh 300 I struggled to pay 75 lol amy

medway-lady
medway-lady in reply to wishbone

I got told by surgeon no to flat shoes a small heel and shoes must be supportive. He chucked the insoles (which had made my left foot worse) into the bin and said I'll sort this out for you. He did too , surgery was simple and an overnight stay but it was actually my GP who listened when I said insoles made it worse. He arranged the consultation and surgery was done in 17 weeks, No delays and so worth it. My foot was so bad I changed to an automatic car and could only walk over soft ground so could ramble but not walk around shopping centre for long. My husband thought that a good thing. lol x

Amy65
Amy65 in reply to medway-lady

Thankyou think I'm gonna have to go down the surgery route to as I'm in agony x men love shopping lol amy

medway-lady
medway-lady in reply to Amy65

It was really no big deal, it never at any point hurt worst thing was when they saw the plaster off. The vibration was very strange. My worst scaring is on the side of my foot with 4 smaller toe scars but you'd be hard pushed to see them.

Hidden
Hidden

Sorry you are suffering. Feet are a pain...literally!

I got orthotics on NHS. However, they make things worse. I might try sketches.

medway-lady
medway-lady in reply to Hidden

Ask to see a surgeon my GP suggested it and best thing I've had done with the RA. Pain gone in foot and normal shoes now.

Hidden
Hidden in reply to medway-lady

Thanks. I'm seeing GP on Wednesday. I will mention it. The orthotics actually make knees worse too! I'm not sure if they gave me someone else's. The second batch made are so thick it's hard to find shoes to fit!

medway-lady
medway-lady in reply to Hidden

Yup went up a shoe size and made the Mortons a lot worse. I get a great deal of pleasure now wearing sparkly sandals and heels going out. Just 'cos I've got RA don't mean I want to wear granny shoes.lol As have a pair of sort of Victorian ankle boots to go with skirts. Having said that I went out yesterday in a skirt and suede cowboy boots just because I could. Going to make the most of painfree feet. x

Hidden
Hidden in reply to Hidden

Hi Nettie (and Amy too), did you get hard orthotics? Because I’ve got a pair of custom made soft orthotics, that the Podiatrist made for my golf shoes. Basically, they replace the inner sole, then he added bits to change how my foot bears weight - I think it’s called “unloading” the bad joints. They cost me about the equivalent of 50BP, which I thought was reasonable given the work he put into them. What’s more, they are fantastic! The brand is Formthotics. The Pod also said that hard orthotics are of no use to people who have RA damage in their feet, cheers :)

Kalimera57
Kalimera57 in reply to Hidden

Thanks for your post. I’m due to get insoles at the end of this month so your information is really useful.

Amy65
Amy65 in reply to Hidden

I got insoles orthotic hard ones from foot clinic she got them of her shelf they are very hard .my back and knees kill me if I were them any longer than 2hrs .at gp today she's gonna refer me to pod on nhs so thankyou amy

Hidden
Hidden in reply to Amy65

Ouch! That first Pod wasn’t great. Website is formthotics.com if you want to do some research. They’re International, so should be available in the UK. I would expect a good Pod to know either about them or a suitable alternative. Good luck, cheers :)

wishbone
wishbone in reply to Hidden

Worth trying some on in a shop. Not sure if all styles have memory foam inners, but a lot do. My feet are in a proper mess, hurt like hell and really need surgery . Except for hover boots, which are only available from NASA in the US and quite expensive at that, there's no footwear on earth that's going to allow me to walk without pain, but my Skechers definitely help a little and I find them better than the prescription orthotic insoles I used to wear.

If love Skechers . I've got three pairs with memory foam, plus they weigh nothing

SKECHERS RULE OK! :-)

Ajay575
Ajay575 in reply to wishbone

There are different sketches soft and foam and normal ones like trainers .if there is a PAVERS SHOE SHOP they tend to have lots and reduced to £49

paulywoo
paulywoo in reply to Hidden

I have to agree Nettienet, I got insoles on nhs and cant walk far at all in them. Im crippled with pain when I use them.

Amy65
Amy65 in reply to paulywoo

Me to lol

I had the toes pinned on my right foot. Had to wear a special shoe till they were removed. The op was very successful. I bought hammer toe supports online before having the op. They were helpful. All the best. X

I know nothing about Bio's but do about feet. My left foot only has been affected and I've had it corrected on the nhs. Toes broken and straightened, curveture straightened and have two completly pain free normal foot. Ask to see an orthopedic surgeon asap as something can be done. And look this up on NRAS website I'm sure its on there too. My foot has plates in it but scaring is minimal and I wear heels and have pain free feet. I ramble and have no problems now. It was worth it, in plaster for 2 weeks and then a boot for another 6 then returned to normal in about 4 months.

It’s very painful for you , my feet and ankles are so stiff and painful when I wake up and find it so difficult to get about, after a while it improves. I sympathise with you and wish you well x

Amy65
Amy65 in reply to Moremagic123

Thankyou

Thanks everyone for ur advice .say gp today she is gonna refer me to nhs podrist to c what can be done with feet .amy

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