Just little help : Hi folks I was on rituxamab which... - NRAS

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Just little help

Sueh121268 profile image
7 Replies

Hi folks I was on rituxamab which did nothing for me..... Came off that and spent months just on methotrexate in the mean time I just got sicker and sicker some times just spending days upon end in bed... January I had my first of 3 infusions of abadecpt but when my specialist saw me he immediately gave me mythelprednisol injection because I was so ill.... Just had a call from RA telling me my CRP levels were to high and my ESRs.... I said I was feeling great now. He asked if the abadecpt was working I said I didn't know....he seemed to not know that I had had a shot.... And seemed confused if the abadecpt was working.... anyone else experienced this?? Is it just the prednisolone that has worked or is it the 2 together

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Sueh121268
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Neonkittie17 profile image
Neonkittie17

Hi, the Pred injections will usually work right away to reduce inflammation and relieve stiffness and pain in the interim whilst an RA med is taking time to work. I started Abatercept/Orencia injections last September but had to stop twice for vaccine/boosters, but Abatacept sub-cut is often a slow worker I’m told by the rheumy and can be up to 6 months for full benefit.

I’m sorry I don’t know if it is supposed to work sooner for the Abatacept “infusions”. Hopefully someone here will answer this soon for you. Steroid injections do often confuse issues as to what’s working for the RA, but hopefully Abatacept will start to give you relief soon. I’m confused re the high ESR/CRP as the very fact I used to have steroid shots meant my inflammation levels/results decreased/calmed down in my earlier years of uncontrolled RA. (This was/is only a temporary solution for the out of control RA until the RA med worked.)

AgedCrone profile image
AgedCrone

Just some thoughts…What did your doctors say about you feeling so sick for so long on just Methotrexate ? Didn’t they suggest you stop taking it? Were you taking Mtx & a steroid with the Rituximab?

I think It’s unusual to go back to just Methotrexate…were you on it Pre starting Biologic infusions?

Was it the same doctor who prescribed the Rituximab who gave you the Methylprednisolone injection after switching to Abatercept?

A methylpred steroid injection should normally bring down the inflammation & your blood results.

Maybe you could ask your rheumy nurse to check your infusion /injection records?

I hope whatever you are on now is helping.

Shresworld profile image
Shresworld

My last Rituxan infusion was 8 months ago and I was just getting ready to start embrel because of too many infections with Rituxan and I got a positive COVID test thank God I waited to start the embrel because of the COVID I wondering when I can or I will start the embrel I've had COVID for 2 days now.

oldtimer2 profile image
oldtimer2

From what you have said it seems likely that your current improvement is due to the steroids. You will have to wait a bit longer for the steroid injection to wear off before you know if the biological treatment is working.

Sometimes the biological treatment acts very quickly. I improved almost immediately after adalumimab injection, it was like a miracle and still is every fortnight, then gradually tails off. Other people report that it took some time before they could tell that there was an improvement, and sometimes that particular medication doesn't work for you and you have to try another. My sister is on her fourth biological (sarilumimab) and finding that successful.

DenMum profile image
DenMum in reply to oldtimer2

Hi. Glad to hear your sister is doing well on Sarilumab. After almost a year on MTX and being declared in remission, I got a serious infection which caused a massive flare. I have now been on Sarilumab for almost a year. My CRP is rock bottom but my joints are not back to normal and every time I get an infection, even a cold, I flare again. I'd live to know if this is common?

My Rheumy team have brought forward my review to just after Easter but it would be helpful to know whether other people have experienced similar.

Neonkittie17 profile image
Neonkittie17 in reply to oldtimer2

Great it worked fast for you. Enbrel worked within two hours for me back in 2013 like a miracle indeed, but sadly went downhill fast after 5-6 weeks. For my most recent med (Abatacept) started September 22 it is difficult as yet to gauge as I’d not gone downhill from the last Rtx 18 months prior so didn’t plummet as such to wait to improve again. x

Angels54 profile image
Angels54

Hi just to say I had infusion of rituxamab and felt very I’ll after it , just didn’t agree with me , went on abatacept which helped a lot , unfortunately had to stop this as it seemed to stop working for me , I’m now on Benapali which has helped , also on steroids daily if 10 mg because I had to stop injecting for 5 wks because big kidney infection. 👍

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