JAK inhibitors vs Tocilizumab vs Rituximab - side ef... - NRAS

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JAK inhibitors vs Tocilizumab vs Rituximab - side effects worry

UpandDown profile image
29 Replies

Help & suggestions please!

I need to get off Humira and my Rheumatologist has suggested these 3 options. I have looked at versusarthritis.com and the list of side effects scares me. Especially the shingles.

Can anyone please shed any light on how bad the side effects and your personal experience? I am leaning towards Rituximab as the side effect list seems little less scary.

Also, any advice on this would be good.

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UpandDown
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29 Replies
Boxerlady profile image
Boxerlady

Hopefully someone with personal experience will be in touch soon but meanwhile check on the NRAS site as there's lots of useful information on there.

nras.org.uk/information-sup...

Deeb1764 profile image
Deeb1764

I am on Jak Olumiant and been best drug by far for me side effects don’t seem to have any but did not read package before taking as decided to go with the flow on this one as so many issues prior drugs.

in reply to Deeb1764

Me too I’m the same as Deeb

Mermaid11 profile image
Mermaid11 in reply to Deeb1764

I agree, I'm on the same as Deeb1764 and it's been the best drug I've been on in 2 years. No side effects and feeling so much better coming up to 3 months on it.

I'd give it a try, like Deeb said I didn't really think too much about the side effects as I was so fed up of constant flare ups I was giving up hope of finding a drug that would work... until now.

MoniqueB profile image
MoniqueB in reply to Deeb1764

I'm also on baricitinib. I've been on the drug for almost three months and (knock wood) haven't had any side effects. It's been a very long time since I've felt this well.

oldtimer profile image
oldtimer

Don't worry too much about side effects - you might not get them!My sister liked the JAK inhibitors best - simple to take but unfortunately didn't work long term for her.

You can have an injection against shingles - but have it before starting them!

helixhelix profile image
helixhelix

I’m not on any of these, but the thing that made me chose between the drugs I was offered (Rituximab, Enbrel and something else I forget) was the speed at which the drug leaves your body.

Enbrel has the shortest half life so I went for that . I think JAK inhibitors also don’t hang around long. Rituximab is the slowest, and in these covid times the one that suppresses your immune system the most which is perhaps another consideration?

in reply to helixhelix

Baricitinib/olumiant is also a half-life drug . I forgot to take them (long story) by day 3 I was declining day 5 crippled.

helixhelix profile image
helixhelix in reply to

It’s a JAK, so yes short half life.

ElizabethW profile image
ElizabethW

I tried the Jak inhibitor Xeljanz for 3 months and stopped due to side effects. I am now on Olumiant (baricitinib) and Ì am not having any side effects. I was worried about starting this one because it is another Jak inhibitor, but 2 months in, no side effects.

Mmrr profile image
Mmrr in reply to ElizabethW

I was the other way round, when on Baricitinib I kept getting viral infections, changed to toficinitib and have virtually no side effects. It shows how different we all are.

in reply to ElizabethW

I had Xeljanz and after 3 months was experiencing dizziness and nearly blacking out so stopped it.

ElizabethW profile image
ElizabethW in reply to

That sounds horrible. I hope you found something that works for you.

With Xeljanz I was having insomnia, brain fog, tingling legs, and times when I was short of breath.

Madmusiclover profile image
Madmusiclover

Been on Baricitinib for getting on for 3 years. Had classic two chest infections in first year but no side effects since. I chose it because it has a very short half life. You need to come off it for a spell if you get any kind of infection or are due an operation. I came off it for a week before and week after my recent op. Try searching for the drugs in the search box to find other responses. I love it. Changed my life.

Mmrr profile image
Mmrr

I'm on toficinitib with virtually no side effects.I need to be careful with my foot and oral hygiene as I seem to be more prone to athletes foot and minor issues with my mouth, blood blisters and so on. A small price to pay.

It leaves the body very quickly, so if you do have side effects they will disappear quickly.

I've recently had two surgeries within 3 days, stayed on all meds and have had no infections, the wound although slow to heal has done so without issues.

Blodynhaul profile image
Blodynhaul in reply to Mmrr

Great to hear your positive feedback Mmrr :)

Neonkittie17 profile image
Neonkittie17

Rituximab stays in your system longer and depletes your B cells for many months which enables your movement due to no RA disease activity causing inflammation, but also affects the efficacy of vaccines, so that’s really important to think about. You’ll have to time future Covid boosters etc and flu vaccines.

On the other side Rtx gives excellent mobility and takes CRP/inflammation level down to <5. It gives you freedom of not having weekly or fortnightly injections or taking daily pills, etc. You repeat the Rtx infusion(s) at a minimum of 6 months so it gives a lot of positives in that way. Pros and cons. I’d do a list/table of those to see if that helps you look at a glance.

I spoke to the NRAS helpline when I had doubts about starting biologics in 2012 and they were so helpful and informative. Good luck with deciding and hope all goes well for you. 💗

ElizabethW profile image
ElizabethW

I had shingles vaccine prior to starting Jak inhibitors. I would ask about that if it is not offered to you before starting.

HanaleiBa profile image
HanaleiBa

Toci has been my and my mom’s miracle. My rheumie went straight to it once I failed enbrel. She “didn’t want to mess around” and had seen the greatest success with it. This is in the US. My mom did well on a JAK and many do for about 5 years, but she was one of the rare blood clot people from it. Xeljanz, the first JAK, has a black box warning for clots so a slightly higher rate. But that is almost always at the higher dose. Not sure what that is, but your doctor will. I’d stay away from looking at all the side effects just because everyone is different. It’s the small risk we take for the massive potential results. Just be aware of them in the back of your mind, maybe?

Silverpixie profile image
Silverpixie

I'm on tocilizumab. Only side effects are that I've no excuses for not walking miles, not going to 2 Pilates classes a week and not being generally upbeat and cheerful!

Brushwork profile image
Brushwork

We can’t give you advice, we are not experts. However, my experience with Tocilizumab has been life changing. Side effects are minor and sometimes nothing at all. The word of caution has to be, as you know, what works for one might not for another.

Good luck in finding your wonder drug.

davannh profile image
davannh

You need to think about the effects of RA on your body. You have this already. This is a “known” Worrying about a ‘possibility’ of a side affect is a bit negative. RA affects your whole body, it is inflammation, it can affect lungs, heart etc etc. The devastation it can cause to your joints can damage them badly it can affect you for the rest of your life. It can take away your independence and leave you in constant pain.These amazing drugs that have been developed by scientists and carefully researched are quite simply life changing. I tried four until I found the right one.I started Tocilizumab eleven years ago after having RA for 30 years. I already had damaged knees,elbows and feet, but Tocilizumab gave me back some quality of life. Don’t focus on the negatives think of how much it could help you

Just one point, Rituximab is a six monthly infusion, if you choose that and it doesn’t help I believe you have to wait six months before you can try another one. This caused me frustration as I was anxious to start to feel better. Things may have changed now.

Also I think if you are thinking of the side affects perhaps your RA is not affecting you too much. I was desperate and in so much pain. I am trying to say that things could get a lot worse with your symptoms.

Tkat10 profile image
Tkat10

Didn’t really have any side effects and been on both. Neither really totally worked for me so switched treatments.

Knit12 profile image
Knit12

I am about to start my 3rd JAK drug and have previously been on Tocilizumab Side effects are different for everyone and I did not get shingles with any of the drugs despite having shingles several times years ago when in my early days of RA and only on sulphasalazine. Never be afraid to try just cause of warnings on the packaging. My new drug says it has red warnings on blood clots and cancer, it hasn’t put me off after all this might be my wonder drug and let me get my life back

Green230461 profile image
Green230461

I have been on baricitinib now for eight months no side effects and can now swim😉

mille profile image
mille

Hi, I have been on rituximab for 8 years now and it did take around 4 months to get the full effect but it has been well worth it.

UpandDown profile image
UpandDown

Thank you everyone for your wonderful inputs. My RA is bad at the moment in my wrist and fingers and I have morning stiffness and pain in my knees at night. And that's why I need to move off Humira. I suspected it wasn't working anymore, but the doctors listen to it. Anyway, now I need to choose.

I am being offered the 3rd generation JAK - Upadacitinib and didn't check if the Shingles injection would be offered or not.

It's a good point you all make about how quickly the drug leaves the system. I will keep that in mind when making the decision.

ElizabethW profile image
ElizabethW in reply to UpandDown

Whichever medication you choose, I hope you get good results.

Hairbraid profile image
Hairbraid

Hi I was on humira before that baricitinib both could not tolerate when I saw my rheumatoid consultant I was on so much pain from jaw to feet struggling to walk with knees I did not even look at side effects I had to wait another 7 weeks so bad pain you have to wait 12 weeks for humira to leave body before start another biological it’s been 8 weeks since first of the two each week I’m seeing improvements like never before nothing before worked it could be the steroids they give you first in infusion can take up to 16 weeks to work some say better after there next lot of treatment but up to now have not felt like this in 4 years so happy seeing consultant in October so fingers crossed hope you reach right decision for you xxxx

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