Tocilizumab - dizzyness and dry skin

[Claire32]

Hi everyone

I have recently changed from Baricitnib and methotrexate to tocilizumab. The reason for this is that after 11 years on methotrexate I was really struggling with side effects and I started to miss taking it as I think my body had become intolerant to it as I was feeling extremely rough with it. Although my consultant disagreed with this and said that wasn’t the case. Unfortunately the Baricitnib wasn’t enough on its own and my RA became really really bad.

my consultant said tocilizumab would be an good option as I could take it on its own.

I’ve had 2 doses now and feel quite dizzy and out of sorts for a few days after taking it and I’ve developed really dry skin patches on my palms and fingers which I’ve never had before.

It’s early days but has anyone experienced these side effects initially and then it settles down as the body gets used to it?

I am also going to contact my consultant tomorrow.

I’m feeling very deflated as in alot of pain, and in the past 11 years have been on methotrexate plus Enbrel (stopped working after3 years) rituximab ( had an allergic reaction on first infusion) barciniib (amazing at first but then stopped working as well especially when I wasn’t being consistent with methotrexate)

thanks for reading xx

[Lolabridge]

I’m on weekly Tocilizumab, also on its own. It started to work for me after about three weeks and is controlling my RA very well.

I have had drier skin for a while with some itching in a few places (aloe vera has helped with that) but not dizziness. - I wonder if that is caused by something else? Try not to give up on Toc too soon as I hope you may notice a big difference in a week or two.

[Claire32 in reply to Lolabridge]

Thank you for the reply and it’s so nice to hear you’re doing well on it. I’m on week 2 and it’s done nothing so far but fingers crossed.

Thank you xxx

[Madmusiclover]

I feel your pain. Took 5 drugs to get to Baricitinib but has more or less stopped working so will be trying Rituximab. Was told the allergic reaction is very rare when I enquired but you are one of two people on here who have said it happened to them! Can’t advise on your specific query but good luck.

[Claire32 in reply to Madmusiclover]

Good luck with the Rituximab, yes I was told at the time it was very rare. I had high hopes for it as well and I really liked the idea of just having the infusion every 6 months. Oh well good luck to you, hope it helps x

[ruth_p]

I had quite big injection site reactions to the toc when I first started using it but it settled down after about 4 injections. Tocilizumab has been my best friend since starting it. I’ve been on it for 8 years and it’s still working brilliantly. My CRP is less than 1, my ESR is also very low. I have become more sensitive to allergens such as pollen, washing power and body wash but I’ve had those since my first biologic in 2008. Try to stick with it because it can take time to work. Do let your consultant know about the problems you are experiencing so they are aware. Good luck!

[Claire32 in reply to ruth_p]

Thank you, so pleased to hear it’s working well for you x

[Amnesiac3637]

Hi. Sorry to hear you didn’t do well on Baricitinib - I was on it for three years and it stopped working after I had Covid and I could have cried (well, I did) as it had been brilliant. I can’t tolerate MTX so am always on mono-therapy and was also put on Tocilizumab last year. I too felt dizzy after the injection for a few days and also developed dry, peeling skin on my fingers for a while but that stopped. I’d give it a bit longer than two doses -it doesn’t work as quickly as a JAK -and as you know, sometimes the side effects from drugs take a while to either appear or wane. Hope it works for you - so miserable, those first few weeks of a new drug.

Unfortunately, TOC didn’t suit me and my consultant gave it three months and I came off it and am now on Filgotinib, another JAK, which is doing the biz so far. All the very best and hope you feel much better very soon.

[Claire32 in reply to Amnesiac3637]

I was on the Baricitnib for about 3 years and yes it stopped working for me after I had Covid. I was doing so well until then.

You’re right im in that stage where you’re waiting to see if a drug works whilst experiencing side effects and wondering if they will last? Baricitnib worked overnight and I didn’t get any side effects from it! Although I had to take Mtx with it and I felt really sickly with that.

Glad your doing well on your new drug regime

x

[Mcleish]

Hi Claire are you having monthly infusions of Tocilizumab or are you injecting weekly? I have been self injecting a weekly dose of Tocilizumab for 5 years now and have found it to be the best biological treatment for me Initially it took about 6 weeks to see any real improvement and about 3 months for a significant improvement. Like all new drug treatment it takes time for it to work, particularly after stopping your previous drug regime. I have had no specific side effects and feel the best I’ve been in 40 years of having RA and MCTD. I also have Heart Failure and it was my Cardiologist who researched and recommended Tocilizumab to my Rheumatologist for my treatment and taking this drug gas also improved my heart function. Everyone is different and what works for one person doesn’t always work for another. The pain of RA is horrendous and you can’t understand it unless you’ve suffered it. All I’d say is with any new treatment is patience , give it a chance, don’t put everything down to side effects as there could be another reason for them. Good luck and I hope you feel better soon

Moira McLeish

[Claire32 in reply to Mcleish]

Thanks so much for the reply. I am so pleased to hear you have done so well on it and it’s improved your heart function too as well as controlling your RA. You’re right the pain of RA is horrendous and it can get you down.

I am injecting it every week. I’m having my first bloods tomorrow so hopefully they will be ok.

Thank you for the reply and the well wishes, really appreciate it

Claire x

[Mcleish in reply to Claire32]

I hope all goes well with you tomorrow Claire and that you get some relief soon.