Suggestive help required please

[LillyBeagle]

A Merry Christmas to all readers and hope your days were special. Hubby and I had a lovely Christmas thanks to our daughter and son-in-law. I did think I was not going to be able to go to our daughters for Christmas as on Christmas Eve evening the flare up pain in my ankles was so severe I had a job to put my feet on the floor. I took painkillers and by Christmas morning my left ankle was a lot better and manageable. But my right ankle, although extremely painful, I can just about hobble.😥

After 9 yrs on Tocilizamub and with so many flare ups all year I was changed to Abatacept in October. I has d 3 infusion (2 wks apart), and then after a month I started on self inject, of which I've just had my 3rd one.

After the 2nd infusion I got this pain in my ankles and has been niggling ever since.

I did see the Rheumy nurse in Nov who did give me a steroid injection, but if I'm honest, didn't notice too much difference.

I'm still thinking that the pain in my right ankle must be a flare and am taking tramadol, paracetamol and Naproxen, which helps to keep my pain just bearable.

But has anyone got any other suitable idea of treatment to help me please. I am hoping to go down to Devon to share New Year with my brother, but this pain getting around isn't easy.

All good wishes to you for a Happy and healthy New Year 😍

[Runrig01]

I find wearing supports helps with taking my weight through joints. I use bamboo ones, that can be worn at night as well, which many you can’t. TENs machines help whilst on, but pain quickly returns when you stop.

[LillyBeagle in reply to Runrig01]

Thank you, I put a support on when we got home from my daughters this morning and it does feel a bit easier for walking on. I haven't heard of bamboo supports but I'll see about getting one. Thank you

[LillyBeagle in reply to Runrig01]

Hello Runrig01, after your suggestion I ordered a bamboo ankle support yesterday and it came this morning and I put it on just before lunch and I can't believe the improvement I feel at the moment. I hope this is going to help me get around a bit more easier. Thank you xx

[Runrig01 in reply to LillyBeagle]

Glad it’s helping. 👍

[medway-lady]

Ice to reduce inflammation might help.

[LillyBeagle in reply to medway-lady]

Thank you.

[medway-lady in reply to medway-lady]

Abatercept never worked for me. I used it for about a year with dreadful skin problems and eventually went back to Etanercept. I hope it works for you though.

[LillyBeagle in reply to medway-lady]

I've not been on it very long. No side affects yet and hope there will not be any, but I really want it to work. Rheumy have said to give it at least 6 mths.

[medway-lady in reply to LillyBeagle]

I really did too but sadly the drug induced eczema was really sore and just kept spreading so I didn’t mind it didn’t work very well. It was disappointing and I was lucky to go back to Etanercept which works with the AZA quite well. It all takes time and patience.

[Ankspon in reply to medway-lady]

I was interested to read that you went back to Etanercept. I had good results with Enbrel for 17 years but then it stopped working 2 plus years ago. I was given steroid injections and tablets, then Adalimumab which didn’t work and then tocilizumab which initially worked but caused side effects. I’ve now been on Baricitinib for 5 weeks and it’s working.

My question is if I run into problems is it worth re trying Etanercept? I presumed I had developed antibodies to the drug but maybe these don’t stay in your system forever.

Thanks for all the helpful information and tips.

[medway-lady in reply to Ankspon]

No idea I just asked to go back and it’s working. My consultant had to argue the case though but as I have other health issues the options were limited. So worth asking about.

[Ankspon in reply to medway-lady]

Many thanks for your reply.

[whitedog]

Hi

When experiencing my worst flare ups earlier this year, I found rubbing Voltarol (the max strength 2.32% one) into painful joints morning and evening helped.

Might not do so for everyone but I noticed a difference after using it repeatedly and it helped get me from feeling totally seized up first thing to moving and venturing out of the door.

[LillyBeagle in reply to whitedog]

Thanks White dog, anything is worth a try, but pain is a bit easier this evening. Hoping it keeps improving.

[Monkeysmum in reply to LillyBeagle]

Just to add to this, I have Ketoprofen gel on prescription from the GP for when I have a bad flare in my knees - I believe it is a stronger anti-inflammatory gel than you can get over the counter but obviously you would need to go through your GP to get it. Hope things improve for your New Year trip.

[LillyBeagle in reply to Monkeysmum]

My GP gave me a prescription for Volterol but will make a note of this one and mention it to the GP

[Stills in reply to LillyBeagle]

I also do as White dog with the gel, I find the regular use for a couple of days seems to reduce the inflammation making walking easier

[wilbertjellyfish]

Speak to your GP about alternatives for pain relief. I take eterocoxib so it's once a day instead of naproxen. I was using co codamol instead of paracetamol alone. You can get sulphadine max in chemist which has 12 mg codine., this wasn't enough for me so I'm on a buprenorphine patch now. It has helped because it's a steady rate of pain killers rather than pulses. I'm still on paracetamol, 8 a day and sore in places...my right ankle isn't great but my left is a lot better.

[LillyBeagle in reply to wilbertjellyfish]

I've had pain patches before but a good few years ago now. Thanks if the pain continues and will try and get an appt with my GP (that's very difficult at the moment).

[Tealblue2]

I’ve found that putting my feet on a plug in heat pad when I’m sat has helped the pain this year.

Hope you feel better soon

[LillyBeagle in reply to Tealblue2]

Thank you I have used my heat pad and my ankle pain has eased a bit over the last couple of days having tried different suggestions from members

[allanah]

Firstly check its the ra ... ankle pain can have many other causes and you mentioned the steroid wasn't too helpful. It could be other problems. Then try all the other suggestions as the others have said x

[LillyBeagle in reply to allanah]

Thank you allanah

[AmateurSewer]

I had similar issues about 3years ago and I found physio treatment helped, first very very light exercises - I realised that my ankle muscles were weak and I had to resolve that first. Hope this helps you.

[LillyBeagle in reply to AmateurSewer]

Thank you. Getting NHS appts is not very easy at the moment but I'll look up exercises for ankles on line