Abatacept and coming off prednisolone

[debjw]

Hello lovely helpful people

I started Abatacept injections a month ago following a flare and stopping rituximab that didn’t really work. I was given a months worth of prednisolone which I have now stopped a few days ago, starting on 10mg and then 5mg. I was feeling really good and hoping that the Abatacept had started to work as I finished them on Thursday. Unfortunately today I now feel aches and pains and very rickety again. Does anyone know how long roughly the steroids would be in my system. Also is anyone else on Abatacept and roughly how long did it take for them to work? I know they’re both open ended questions but just as a guide.

Thank you x

[Runrig01]

The pains may be from abruptly stopping prednisolone, and getting withdrawal symptoms . Anyone using for more than 3 weeks should taper off. The reason is your HPA axis generally switches off whilst using steroids, and needs gently coaxing to wake up. Prednisolone only lasts 24-36hrs for its ant-inflammatory effect, so will have worn off now.

[debjw in reply to Runrig01]

Thank you. I was told to use 10mg for two weeks then 5mg for two weeks by my Rheumy nurse who is very experienced. I was a bit concerned about just stopping. Will this right itself then? Hopefully the fact I felt better means the Abatacept is doing something.

[Runrig01 in reply to debjw]

So my rheumatologist has always said, if the pains gradually ease over a few days, then it’s withdrawal pains. If the pains intensify over days, then it’s due to inflammation building up again, and that I should go back to the dose where it was controlled. If you feel pains worsening maybe contact rheumatologist.

[debjw in reply to Runrig01]

Thank you. I suppose if I go back on them again I’ll never know if and when the Abatacept is working. It’s a month now.

[JenniferW]

It took about six weeks for the effects to kick in a reasonable amount, as in enough for me to tell it was having an effect, 3 months for significant impact i.e. pain greatly reduced, and six months to be life transforming.

I still get flare ups when coming down with something and felt all bony and achy this last weekend, having overdone it at a conference last week, but am recovering now.

[debjw in reply to JenniferW]

That’s great to know and thank you. I hope that you’re soon feeling much better. Have you been on other biologics?

[JenniferW in reply to debjw]

Thank you.

No, I have RA and lupus so they were limited in what they could prescribe. Fortunately it worked for me.

[debjw in reply to JenniferW]

I’m so pleased for you.

[medway-lady]

In my case it took 12 weeks to work and a month is too soon to know. If it’s working. For me sadly not as good as Benapali.

[debjw in reply to medway-lady]

Thank you. I had enbrel for 17 years and rituximab for 2 years. Embrel was life changing and I think it was covid vaccines that messed it up with hindsight. Rituximab didn’t work well for me and now I’ve got significant damage and waiting for a wrist and hand operation sadly. I’m glad your meds now work for you.

[AgedCrone in reply to debjw]

Did the Rtx not work AFTER a Covid vaccination? That happened to me. Due to that & other problems I ended up waiting 15 months for a Rtx infusion & it’s working.My rheumatologist let me decide if I gave the Rtx another try…& it has been successful….maybe you could give it another try….as long as you haven’t recently had a Covid jab?

[debjw in reply to AgedCrone]

That happened with etanercept with me after 17 years of it doing a great job. I’m dreading having another one. I seem to have a flare each time. I’ll see how I get on with Abatacept ax started that now. Rituximab wasn’t right for me with all the stopping and starting and waiting. Thanks for replying.

[Jillyanne]

you said that rituximab didn’t work, can I please ask how long after having rituximab did you start a new treatment?

[debjw in reply to Jillyanne]

Nearly two years.

[Jillyanne in reply to debjw]

OMG 😳

[debjw in reply to Jillyanne]

Why omg?

[Jillyanne in reply to debjw]

Sorry, just seems like a long time in between treatments .

I think my rituximab is not as effective and it’s been 3 months since my last infusion, been on it since 2017 , I just presumed if it’s not effective you would get a new treatment sooner , thats all

[debjw in reply to Jillyanne]

I had an infusion around every 7 months. It was effective once it got going but it was the waiting when it wore off for the treatment and waiting for a depomedrone that was the problem. I needed something more regularly. It took a while to convince my rheumatologist.

[AgedCrone in reply to Jillyanne]

If you have been having every Covid jab you have been offered that could well be the reason the Rtx does not seem as effective.I felt it was so successful it was worth swallowing a few painkillers before giving up on it..& that has proved the right decision for me. I had an infusion in April…15 months after the last one..had zero Covid jabs,& the Rtx is working.

Sometimes Less is More.

[Jillyanne in reply to AgedCrone]

Oh ok, yes I have had every Covid vaccination 😉😉Perhaps my body is just over dosed on medication

Thank you, will keep my fingers crossed 🤞 I am just having a blip

[debjw in reply to Jillyanne]

So have I because we are told we should do! So the choice is potential covid and being really Ill as I have been twice or a huge ra flare that messes up our meds it seems! 😬

[jobredin]

Hi Deb, I started Abatacept 7 months ago with the cushion of steroids in the beginning among other painkillers. For me Abatacept is helping but very slowly,. I got to 6 months and was about to give up but it takes ages for NHS to change drugs and I’m still on it. As it happens I think it is continuing to improve things. There is one knee joint taking a while for the swelling to go and I have retrocalcaneal bursitis slowing reducing. So I would say bare with it if it helps a bit….. I’m going to try staying on it for a year as I have an inflamed lung and it’s a safe option for me and had no lasting side effects. Other than that it’s Rinvoq next on the menu. Also my bloods show vast improvement on Abatacept. Hang in there and good luck.

[debjw in reply to jobredin]

Thank you for this. I’m glad it’s now helping you. Like yourself I’ve got lung problems and lots of other health issues so quite restricted. It’s made a difference already I think so hopeful.

[RAat13]

I was on abatacept from December till May, it never worked for me, I had injections then IV, it gave me fluid around my lungs and heart and my joints got worse. Steroids wear off after 24 hours, also when on steroids everyone needs to "wean" off it. Hence the lower doses after 2 weeks. Mine started on 20mg then 15mg, 10mg then 5mg. 8 weeks in total. The abatacept obviously didn't work for me but it may do you, it needs 8-12 weeks to notice anything. Good luck.

[debjw in reply to RAat13]

I’m sorry it made you so poorly. Hopefully you’ve got something that works now.

[RAat13 in reply to debjw]

I'm on Rituximab now and seems to be working, I was in bed for 8 months.

[debjw in reply to RAat13]

That’s good news x