Short term relief with Benepali?

[Ms-D]

hi there, hope everyone is safe and well. I started Benepali 11 weeks ago and it has been a life saver. However, the past week or two the pain in my joints has started to come back and I am not sure if its the Benepali not working or something else. I also have bursitis and that is excruciating. After having 2 steroid injections and an ultrasound guided one before the lockdown I am very scared of having another one as the relief is only about a week or two. My consultant recommended having surgery as the next alternative as I have done the physio but it was excruciating so stopped. I have tried resting the area, heat and cold packs as well as various gels but nothing is helping. I also have a torn or damaged tendon in the area so I am not sure what to do. Anyone got any advice or suggestions as I am seriously in tears with the pain and working in a school is not going to be easy come September as I will no longer be shielding. Thank you in advance. Sorry for my little rant.

[Moomin8]

Morning 🙂 I also work in a school and am currently shielding- snap! I'm not on Benepali though, so can't help you with that specifically- sorry. Can they try you on a week course of prednisolone? I'm currently on a week of 30mg because of a bad flare - affecting pretty much all of my joints. Day 2 and things are beginning to ease a little. I know it's not a long-term fix, but to have some relief is a bonus. Maybe Benepali isn't enough on it's own or just needs a bit more time to kick in? Have you had a blood test in the last couple of weeks to monitor inflammation etc?

[Ms-D in reply to Moomin8]

Hi thank you fpr reply. I will speak to nurse Monday and see what they suggest. Its hard as no blood tests are available at the hospital and my GP wont offer it as its a specialist blool test and refuse which i think is a load of rubbish. Oh well. Thanks again for advise will defo suggest it x

[Moomin8 in reply to Ms-D]

I'm lucky as my gp do my blood tests

[Leics in reply to Ms-D]

You’re so right it is a load of rubbish blood tests to check for inflammation are routine and not specialist tests at all. I would ask them again if I was you because at the end of the day you should have your bloods monitored. If GP thinks that you’re at risk because of medication and so are getting out of it because of that then they should arrange for a district nurse or someone to do it in your home. It wouldn’t hurt having an idea whether your meds are controlling your inflammation or not so you and your rheumy team can plan your treatment correctly. It only takes about 3 minutes for goodness sake. 🙄 hoping you feel better soon. Maybe a telephone consultation with a GP with regards to better pain relief wouldn’t hurt either.

[HamHammy]

I also work in a school and am on Benapali. For the past 6 months I have had to take naproxen with it as over the last year it's not worked as well. The rheumatology docs are suggesting I start taking methotrexate to make Benapali work better. However there is hesitation just now with the outbreak. Hope you get the right answers too.

[Hidden]

Ms D

Was one of the steroid injections an intramuscular depo in your bum? I'm wondering if that has run out and the Benapali isn't actually working.

This happened to me with Tocilizumab. I flared when Rituximab stopped working. I had a depo and started Tocilizumab. Flared again 3 months later so had another depo. A month later another depo. In December 6 months after starting Tocilizumab rheumatology said nah its not working.

I'm on Baricitinib now and it's working.

I would contact rheumatology say you're getting worse and see what they say. Let us know how you get on.

Best of luck

Kiki x

[Ms-D in reply to Hidden]

Morning.

I had ultrasound guided injection in Feb and two weeke later a depo shot in the bum. I started Benepali in April. No idea but the bursitis is excruciating and i hate pill popping so bearing with pain as best i can until i can not cope. Taking both cocodamol and amitriptyline are making me drowsy so pointless when working from home. Consultant mentioned surgery as next step as does not want to give me more steroid injections. Thank you for your reply x

[Hidden]

I had my left bursae injected, it didn't help at all. If my RA is active my bursae hurts. I hope you can get in contact with your team and they can decide how best to proceed

Take care.

Ps anti inflams may help you hip, elbow etc

[Ms-D in reply to Hidden]

Thank you for the reply. Managed to get blood tests booked in next week so will see whats going on but as im seronegative my markers dont show up. Its so annoying. How do you cope with the pain in the bursa? If im not drugged up i cant cope especially at night.

[Hidden in reply to Ms-D]

I relearned to sleep in the recovery position so I'm not on the bursae and I have a gel topped mattress. But I take co-codamol when it's bad.

[Ms-D in reply to Hidden]

I have tried that but after an hour my back hurts. Got arthritis in knees so it hurts more on one side. If it wasnt for my simba mattress i dont know i would get any sleep.

[Hidden in reply to Ms-D]

Bless you it sure isn't easy is it. I hope your rheumy can help you.

[Ms-D in reply to Hidden]

Thank you. How are you feeling?

[Hidden in reply to Ms-D]

My knee is a lot better but my hands are stiff sore and puffy. I've only been on Baricitinib 8 weeks so hopefully it's got more to give 🤞

[Ms-D in reply to Hidden]

Hope you get some relief. My bursa is killing me and hands are very painful. Cant hold a cup without gripping teeth. Oh well. Have a good day if possible and thinking of you x

[Hidden in reply to Ms-D]

I used to have a plastic tea cup which was a dream to hold. Not as nice to drink out of as China but needs must. Have you got anything like that in the house?

[Ms-D in reply to Hidden]

You will laugh but im using my daughters plastic cups as lighter to hold. Its these little things i miss. Even washing hair and styling is a pain. Im trying not to take pain killers as much as making me drowsy.

[Knit12]

Sounds like you need another steroid injection most only last 6 to 8 weeks. I’m on week 7 of Benepali but got another steroid injection today as my hands have flared up. Speak to your rheumatologist

[Ms-D in reply to Knit12]

Thanl you. Will see what nurse says when i chat to her but its impossible to talk to anyone atm. X