What to try next? Big flare after having baby and having problems finding a new medication.

[Claire32]

Hi all I hope your are all keeping well both physically and mentally during this time.

Just looking for some advice/experience please.

I was well controlled on Enbrel and methotrexate for years. Almost forgot I had RA. So much so decided to try for another baby. Now have a beautiful baby boy 9 months old and 8 year old girl. Feel so lucky. However the wheels have fell off the RA bus. Been in a nasty flare for nearly a year now. Been for a Rituximab infusion today and had a reaction to it so it was stopped. (Apparently This is quite rare apparently - don’t want to put anyone off)

I’m wondering what’s left for me to try? I have only tried one TNF And then this Rituximab. Will there be other things for me to try? Feeling really flat and worried for the future as was so hopeful about this drug as heard brilliant things.

Take care everyone, thanks for reading xxx

[helixhelix]

Loads of things!! Rituximab is a B cell inhibitor, but there are T cell inhibitors like Abatacept, IL-6 drugs like Tocilizumbab, and JAK inhibitors like Baricitinib. And of course other anti-TNF drugs. Talk to your rheumy about what he or she suggests.

[Claire32 in reply to helixhelix]

Thanks so much for replying. You’ve lifted my spirits. It’s been an tiring day so I’m feeling sorry for myself and was feeling doomed! Your right though there are others to try! I think my consultant is calling me tomorrow. I just thought this drug would get me back on top of things! Thanks again xxxx

[springcross]

Sorry to hear that Claire, what a shame after the excitement of the birth of your son. I hope you get it sorted soon. xx

[Claire32 in reply to springcross]

Thank you. I’m sure I will get sorted eventually! Hope you are well xxx

[springcross in reply to Claire32]

👍 x

[Silverpixie]

I tried

CIMZIA, simponi, rituximab, orencia (70% better on orencia) . Then tried tocilizumab which works superbly for me. This was a 6 year "journey" and I had huge "down" moments. However you will see there are lots of other options and more ( like the JAK inhibitors) coming along.

[Claire32 in reply to Silverpixie]

Thank you for replying. Your right, it’s only natural to feel down when your so hopeful for a drug to work and get better and then it doesn’t. I’m so pleased to hear that you are doing well. Take care and thanks x

[oldtimer]

There is accurate information on the NRAS website about the various treatments that are available. Well worth reading and sorting out what questions you might want to ask your rheumy team about future treatment - there is certainly a large amount of choice now!

[robdoe307]

Tried Benepali?

[Tennismad]

Hi Claire

Congratulations on your newest addition to your lovely family.

I was on methotrexate but had to come off as moth ulcers which turned into pre cancerous cells had to have 3 mouth operations but I’m good now. I am on a drug called Leflunomide which is more expensive and does same thing as MTX you mite want to give that a try if you can

Good luck

Margaret xx

[Pamak]

Like you i had a very bad reaction to the infusion but there are others to try. I unfortunately reacted to my next one Adalinumab [ Amgevita] so that was stopped and am now trying Abatacept- so hope that works for me. Don’t give up there are a few to try

[Domhem]

Hiya, I’m the same I have a 1 year old and flared all through pregnancy and been terrible since too. I’ve been on Imraldi since Feb and hoped it would sort out my R.A. (I’m also on pred and a DMARD) but it hasn’t. After covid I’m going to speak to my rheumatologist about trying a different mix of drugs. What I would say is that I think it takes our bodies time to settle after pregnancy (I also have a 3 year old) hormones etc, my baby has only just turned 1 and I think it can take up to two years for it to fully recover. I’m kind of hoping the longer time goes on the better I might feel and the drugs help more. I could be completely wrong but pregnancy is hard on our bodies especially with R.A. Hope you get some help and start to feel better, it’s hard flaring and looking after children, the fatigue is another level!

[Claire32 in reply to Domhem]

Thanks for the reply, I agree with the time to recover after pregnancy. It took 2 years after my first Child to get sorted. Probably because your not picking them up all the time too. So your wrists and hands get a break. Everything is so fiddly with a baby!

I’m in so Much pain at the mo, Enbrel must of been doing something as I’m definitely worse now I’m off it. Still waiting for my consultant to get in touch about what’s happening next.

How much pred are you taking?

I hope you get sorted soon with your meds too. I’ve not heard of imraldi. Is that a bio similar?

Thanks again for replying, take care xxx