Hi all - guilty of being quiet for a few months, I've got a few questions though.
It seems that my Rituximab infusion did not work for me... My doctor is keen to not waste more time trying it again, when we could start me on something more effective.
I've been given two options to think about - Tocilizumab (injection or infusion)
and Jak - Kinase Inhibitors (pills).
Can anybody who has experience with either drug please let me know how you get on with them? I'd like to know about how they fit into your every day routine, any side effects, and effectiveness of treating your RA?
I'm really starting to feel like a guinea-pig and these days don't even want to get my hopes up with a new drug, because they keep failing. The only thing that I've relied on for the past 12 months is steroids, I've gained nearly a stone and now need a bone density scan, and I'm only 24. I just want something that puts me into a period of remission
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Savannahseger
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I'm so sorry to hear of your experience you get your hopes up only to be dashed when the drug fails. Remember it is the drug failing not you. I have tried most of the drugs now and tocilizumab worked very well for me for a number of years. I chose infusions as I'm not keen on injecting myself. I did have some effects but luckily not too bad. I am now on the JAKinbibitor baricitinib and it will be a year next month. I have done well on these tablets, I take one each night and hzvnt really had any side effects but also added mtx now. I cannot say I am symptom less but I have a life but not remission. I do hope this helps, feel free to ask if you have any questions. Good luck.
Thank you so much for your reply, it's hard to find people who have got to the same stage as myself in terms of treatment trialling, but hearing your experience has really helped. At least knowing I'm not the only one...
I'm glad tocilizumab worked well for you. Can i ask, did you work while on the infusions? My work are quite accommodating but it's still quite an inconvenience... But i'd rather no inject and also, I don't respond to injections well either. What side effects did you experience?
The tablets do sound like a sort of magic pill - I'm just worried that they're so new. It seems almost too good to be true you know? just take a pill, no side effects, RA sorted haha. Also I'm not sure if i move onto these, will I be able to go back to trying biologics again?
Hi Savanna, I am so sorry you are going through all of this at such a young age. I didn't develop RA until I was 58 and had already retired early from my job. I find now that keeping healthy and looking after myself is like having a job. Making sure that I don't put too much in my diary and getting rest is very important to me.
I'm sure we would all like to be in remission but I still have flares, I also pick up infections and in some ways accept that that is part of having RA. I do hope that you can find a medication that suits you and gives you an easier life.
The side effects of having tocizilimab infusions I found were fatigue after an infusion and a few of the ones listed. Do keep a record of your DAS score and keep in touch with the nursing team who I am sure you are quite familiar with!
Hi there - I think I can help here ;-). I know a bit about both as I'm on tocilizumab and my mom has progressed to the Jak - Kinase Inhibitors. I have gotten advice from both treatments as well from several excellent rheumies.
I would suggest you start with the tocilizumab (called Actemra in the US). My rheumie (one of the best in the country - works out of Stanford) put me on that as most of her patients had experienced huge success with it. I'd failed on enbrel after about a year. It got me into remission - yay! My rheumie was well known in the field and her patients have experienced huge success following her advice. Though now, a couple years later, it looks like I still have disease activity. That said, I feel great.
She told me our next move would be the Jak - Kinase Inhibitor as her patients have had the best results going there next. She's the kind of doctor you want to listen to - she doesn't just put you in "the next drug on the ladder," rather she has deep experience and will fight for the best next drug for her patients.
My mom (also has RA, but 30 years older than I am) was on different drugs over the years. Last year, she was put on the Jak - Kinase Inhibitor (called Xeljanz in the US) and is the most pain free ever in her 35 years with RA. The health care system she is with, called Kaiser Permanente, is apparently moving it's RA patients over to that drug as they move up the drug ladder because they've seen such excellent results with it across all their patient groups. So, that says everything.
I'd personally say go tocilizumab first and then Jak - Kinase Inhibitor if you fail. That way you get more years out of both. I understand how scary and frustrating moving around is - but based on my own experience and the knowledge of the physicians I've heard from you have two great options ahead of you!
Ah thank you so much for taking the time to share your journey with me. It's relieving to hear from someone who feels confident about both drugs, and actually I have taken the route you suggested (next week will be my 3rd tocilizumab infusion) and I haven't had a flare since starting it (however I was on steroids for a while, which I've now been off for a week and a half).
So far I think it's working but I think October will really tell me if it's worked, as I'll be off the steroids for a period of time and the drug will be given a proper chance.
Can i ask, did you have it as injections or infusions?
I'd be happy to move onto the Jaks drug afterwards now. I'll see how I go, but I'm feeling more hopeful at the moment than i have in over 16 months.
Hi! I self inject 162mg every other week, but that may change depending on how aggressive my new UK rheumie wants to be. I feel good, but the ultrasound showed high inflammation in my wrists. I’d love to know if anyone has been on my situation and posted a question here, but so response to date.
They are great drugs and highly regarded - and I’m a total hippie person who always focuses on non-drug solutions so I do hope what I’ve shared gives you hope. As soon as I found Actemra, as scary as it was to go on a biologic at the time, my life changed for the better. I realized I should take advantage of ALL possible solutions (from turmeric to drugs) as I’m young and want to live a full life. My mom and aunt didn't have these drugs and would have given anything to have our good fortune to be living in an age where disability is NOT our only future!
Ahh I totally agree with your viewpoint on doing all you can to look after yourself, from drugs to alternative solutions. And you sound so positive which is great too! It's all about fighting it and giving ourselves the best fighting chance!
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