Is this a flare ?: I started on Benepali in mid June... - NRAS

NRAS

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Is this a flare ?

roseyx
roseyx

I started on Benepali in mid June ,14 wks ago & very soon felt a real improvement but for the last 3 wks my right wrist has been very swollen & painful. In the past the joint pain has been more spread around & all over the place but this just feels very stuck, making my elbow and shoulder hurt too. I saw a rheumatology physio the other day who was standing in for the rheumatologist. He said it's either a flare which will go away or the drugs not working...time will tell.

How much time though? I could have a steroid injection to get me through the pain now or wait a bit to try & find out whether my wrist will calm down.

I am hoping it is a flare because from what I gather on the forum Benepali is the mildest of the biologics so it would be good not to have to change..

Any advice would be great. I am confused & despondent.

10 Replies
Hidden
Hidden

Based on what you’ve said, I would avoid the steroid injection, mainly because otherwise you’ll not know whether it’s Benepali taking it’s time or failing. Caveat - I’ve not tried that medication, so hopefully someone else will come along and offer some better advice :)

roseyx
roseyx in reply to Hidden

Thanks for your advice YanniBaci. I think your are right...better not to mask what is actually going on but when I embarked on benepali the rheumatologist said it would be clear after 12 weeks whether it was working or not.

Hidden
Hidden

Really sorry you’re in pain Rosie; I am on same but only for a few weeks. I had double shoulder flare the week I started it (not benepali as before injection). This & other flares i’ve had usually last about a week, still a bit stiff but a flare to me is so painful you can’t move or use that joint?

We’re all different it seems and stupid RD makes it so hard to tell if disease itself or drugs not working; my hands have been a problem for a year now, especially swollen wrists, to a greater or lesser degree, depending on who knows what ?? Hope you get some answers soon x

roseyx
roseyx in reply to Hidden

Thanks Kerena, Yes it's so hard to really tell how much effect the drugs are having .. when things start going down hill

Hidden
Hidden

Hello

I'm seven weeks into benepali. I have improvement, but I'm still stiff and have some pain.

I think if it were me I'd avoid a steroid shot and wait a bit. Then if things don't improve go back to rheumatologist. I would have thought if it's working well you wouldn't get flare ups?

Thanks Nettie,I'm glad you are feeling some improvement.

I am hanging in for a bit with the pain & only using one arm but I would have thought the same .

Hi I wonder if you maybe used your wrist more because you felt better and this has caused the flare there?? I ask as that is what I did! I was so happy I had energy and my joints felt almost normal when I started benepali that I re-engaged with activity full on and then felt the sting as I flared and it did tend to affect my 'problems joints' which always go first for me and fatigue was an issue. Do you use supports at all for wrist/hand?

If physio saw it and rules out anything dodgy then probably flare I guess. Have you tried painkillers and maybe cold therapy to reduce swelling?

Hi TPaine, Yes I think there was definitely an element of this ..feeling so happy to be active again when Benepali started to take effect & wrists are problem joints of me too. I had put the wrist supports away but they're out again now. I am taking painkillers but haven't tried cold therapy & will give that a go.

When you felt the sting & had a flare how long did it go on & are you back to feeling good on Benepali now ?

I did the same and felt so much better that I did far too much. Stiffness and pain came back in all the familiar places and I was so tired !

Funnily enough my elbows began to hurt which they hadn’t done since the very early days but then I guess I hadn’t used them much when my hands and wrists were sore. I took out my wrist supports and things mostly settled but I keep them beside the bed to remind me every morning to pace myself.

roseyx
roseyx in reply to Creakywrists

Hi creakywrists, Same with my elbow..before this it was just in the early day it hurt so much. Well it'd be good to think it's just a case of slowing down & being more gradually active & careful.

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