Off Baricitinib and knee replacement

[Mozart150]

Hi I'm feeling tearful. I've been off Baricitinib for one week yesterday as I'm having a total knee replacement next Wednesday 13th (I had my left knee and hip replaced in 2018 before being diagnosed) and had to use walking sticks since. Already my feet and ankles are swollen and it's painful to walk and so stiff and my knee is much more swollen and sore and I'm taking the strongest Co-codamol. When I spoke to rheumy nurse last week, she told me to stop Baricitinib two weeks either side and phone her before re-starting and just said they will give you strong painkillers in hospital like Co-codamol; I told her that I was already taking that but only twice a day then. I will leave a message on the helpline tomorrow and ask for the other nurse but has this happened to anyone else and is it safe to have the op which I desperately need if you have high levels of CRP and ESR- sure mine are rising daily ? Last time I was off Baricitinib for four weeks in the spring - I had to have eight weeks of steroids which I doubt they will give after surgery. I have never taken Tramadol but think that is stronger than Co-codamol. I'm feeling upset about it all at the moment and know that won't help and need to get back to being positive. Thank you in advance for anyone that answers me.

[Deeb1764]

I have had spells of no drugs and had to be supported with prednisolone. Have a chat to your RA team tomorrow as there must be something that can be done. Mentally it will wear you down too and this is a lot to cope with pre op. Big hugs

[Madmusiclover]

Good plan from Deeb1764. Why two weeks? It has a very short half life and should be well out of your system in a week: which is what I did when I had my hip replaced. Also the minute any stitches come out get back on it! You have my total sympathy and understanding but you have to be able to do your physio afterwards so steroid shot seems a good idea to me. Hugs to you. X

[vonniesims in reply to Madmusiclover]

Think they don't like to give a steroid as that too can delay healing. Good luck and do have another chat with your team

[bpeal1]

I would ask to speak to your rheumatologist. Sometimes for things like this I find it best to bypass the nurses. Phone the hospital switchboard and ask for the number of your consultants secretary. I’ve always found the secretaries very helpful at passing on messages to the doctors and I usually either get a reply from the secretaries or a phone call from one of the doctors quite soon. Fingers crossed yours are too.

When I had surgery a few months ago my surgeon was happy to go with the advice of my rheumatologist and my rheumatologist said the biggest risk to a good outcome of my surgery would be flaring and not being able to be mobile after the surgery so I stayed on all my meds. However, everyone's situation is different so you need to take advice from medical team who know you and meds best.

[vonniesims in reply to bpeal1]

Yes I have found the secretary really helpful

[Jackie1947]

I was off my Benipali for 5 weeks but not surgery related and my body missed it. Facing surgery is an emotional time anyway. Trust in your aftercare. No one's going to leave you suffering. After my hip replacement I had good pain control. Good luck!

[katieoxo60]

This is a very traumatic time for you Mozart150, including coping with the pain. You mention Tramadol mine was taken off me on arrival at the hospital and never returned. However I was given stronger pain killers after the op including liquid morphine for a week. I am sure the nurses will do their best for you , fingers crossed your recovery will be good, take care and ask questions if your not sure, I was allowed to ring if I had a problem on a special post op line. But think for most of us we would prefer longer aftercare. Stay safe , best wishes for a good recovery in the near future. xx

[Madmusiclover]

Just remembered: when you are in hospital you can ask them to contact the rheumatologist on duty if you need help. I wish I’d known that when I got shingles. I might have got the antivirals sooner and not been left with post herpatic neuropathy. Good luck.

[oldtimer2]

If you find that co-codamol suits you but is not strong enough to control the pain currently, you could ask your GP (or rheumatologist) for an increased dose of codeine. Either alone, or less flexible, combined with paracetamol. Zapain with 30mg codeine & 500mg paracetamol is often used (up to 8 daily).

Codeine is changed by an enzyme in the your body to morphine to a greater or lesser degree individually. Beware of travelling with codeine medications are they are illegal in some countries. It also casues sleepiness and constipation (I find dates work well for that!).

I hope everything goes smoothly for you.

[Green230461]

When you stop baricitinib it seems to make you sad. I had to stop with pneumonia and I was crying all the time. RA makes the world grey but just imagine how great you will feel when it is over. Take care friend 🤞🏻

[Mozart150]

Hi everyone thank you sooooo much for all your replies ! My rheumy people prefer you contact nurses rather than secretary although sometimes I've had to leave messages with both! I spoke to the pre-assessment nurse this morning and she said I can take Naproxen up until Sunday evening (I've got the 500mg twice a day here) and morphine up until and on the morning of the op if needed. I will call my GP tomorrow (too late to get phone app today) - I will also ask about the higher codeine dose and get some Morphine - he last prescribed it in October and I took at night for about five days when I was in an awful flare (he was very reluctant to issue it but I only took it when absolutely necessary). It was good the preop nurse called back quickly - she did say - if you're in a bit of discomfort afterwards - it will all be worth it - and I had to say to her - it's not just a bit of discomfort - it's more like you're in tears when standing up to try and walk; though thankfully not that bad now! Will let you know how I go. Thank's for your kind words too. Will post when I hear back from rheumy nurses........ I didn't know about on-call rheumatologist - so that's good to know. My nurse told me to stop it two weeks before - don't know why it wasn't just a week - that would have been better ! xxxx

[Madmusiclover in reply to Mozart150]

Bless you. Good luck.

[Mozart150 in reply to Madmusiclover]

Thank you ! Xxx

[Mmrr]

I'm so sorry to hear this, I would contact your rheumatologist's secretary and ask for advice.