Side effects

[Rebecca5]

Has anyone suffered side effects from tocilizumab ?

Adeline x

[allanah]

It's been amazing for me.... quick to do and feel fine after it.

Some people gain weight, I lost it. My cholesterol did go up ( it's one of the side effects) I started statins and it's all good.

[Rebecca5 in reply to allanah]

allanah

Thank you for replying so quickly. Can I ask please how long you've been in it?

Adeline x

[allanah in reply to Rebecca5]

About 7 months. Changed my life to be honest. I feel so much better.

[Rebecca5 in reply to allanah]

Thank you x

[AARA]

Hi Rebecca5

I have been on Tocilizumab infusions for almost 3 years. My Consultant was delighted with my blood results, but it did such a fantastic job of totally suppressing my immune system, that I have had constant infections and gone down with just one virus after another. I have experienced three winters of being almost constantly ill. It got to the point where I became a virtual hermit, because I was either too ill to go out, or too fearful of what I would catch if I socialized with family and friends. At times the only reason I went out was to attend medical appointments.

Not surprisingly the combination of the isolation and the numerous infections left me feeling very low. My Consultant tried me on a half dose and this continued to keep the blood results looking great and the disease activity low, but it still knocked out my immune system.

We were due to try infusions at 6 weekly intervals instead of the usual 4 weekly intervals, but I have never been considered well enough, in the sense of never being infection free, to try this option.

Due to the infections I have had no immuno-suppressant meds. for 24 weeks now. This has been the best Summer I have experienced since 2003. I see my Consultant tomorrow. Obviously I want to avoid further joint damage and not be irresponsible, but right now the cure feels worse than the totally un-medicated disease of RA.

Hope Tocilizumab turns out to be the right option for you.

Wishing you well.

AARA

[Rebecca5 in reply to AARA]

Thank you very much for your prompt & honest reply. What you have experienced worries me as if I take an infection which I frequently do then I have no meds as I need to stop my mtx as well. I was on etanercept injections years ago & I felt amazing but due to either low blood counts or infection I ended up being off it more than on it.

Good luck with your hospital appointment & hopefully hear how you get on. Take care.

Adeline x

[Metal-legs]

I have been on tocilizumab weekly injections for two years. It reduced all my inflammation within a month, quickest acting drug ever! Some side effects- very dry mouth, sinus congestion and raised cholesterol. But if it's been offered go for it and hope it works well for you. Best of luck x

[Rebecca5 in reply to Metal-legs]

Thank you, so pleased this drug has worked for you. I would be on 4 weekly infusion as I have a blood disorder & consultant feels it's safer doing it this way. x

[Metal-legs in reply to Rebecca5]

Good advice, best of luck I hope it works really well for you x

[dwsurquhart]

Hello Adeline, i have been on Tocilizumab since Dec 3, 2016. I have liked it so far besides the side effects i have experienced.

1- weight gain due to water retention, up to 11# within a week of infusion.

2- extra tight ligaments, my achilles feel as though they are trying to remove themselves from the insertion point of the heels.

3- very tight shoulder and neck muscles.

4- the odd bought of dizziness and severe headaches.

Other than that it has been ok. I am having a hell of a time puting muscle back on from losing 52# of muscle mass 2 years ago.

Hope all is well

Scott

[dwsurquhart]

I guess i should clarify that the Tocilizumab took my crp from 152-159 down to less thsn 0.2 in less than 6 weeks. Unfortunately my joint damage has been severe due to first rheumatologist having me stay on drugs that did not work at all for around a year. Cartilage in the knee is supposed to be around 10mm thick, mine has disolved to less than a piece of paper.

Since starting Tocilizumab my energy has been a lot better, and i can go 4 hours before needing a nap. I was napping every 1.5-2 hours for over a year.

Scott

[Rebecca5 in reply to dwsurquhart]

Scott, thank you for replying to me. It been good getting everyone's feedback. My head is a bit messed up at the moment as I still don't know what to do. I can't afford to gain weight as I have two bad knees & extra weight doesn't help them. I try to be an optimist but I know from past experiences that I take side effects from every drug I'm on.

Adeline

[Kay3489]

Hi Rebecca. Just found this site and joined. Its now June 2018 and i know these posts are a few years old but i wanted to tell you my story. I started weekly inj. Of Toc in Sept 2014. Dry lips was a problem along with an ulcer on the top of my tongue within four months. I felt the drug worked fine although i still had a few really bad flare-ups on both thighs which made me bed-bound for two months at a time. The first one, I took in a restaurant and had to go by ambulance to hospital where I spent four days. They gave me with Kenalog injections which killed the pain. Over the past three years I have had pelvic pain on an off and every doc says lack of extrogen. I am 74 years old. I took RA at 52. If you read the side affects of Ro Acterma which is the same drug in The States, its frightening. I had been having pelvic pain every three months or so and i thought p, cistytus but was told no. The pain became more serious in October 2017, 3years kn the drug. I asked my Rheumy in Nov last year if it could be the Toc and was told no def. Not. However by April this year he told me to stop it, I think he was looking at my file at the docs I have attended. It has cost me quite a bit as my own docs could find nothing wrong. The first gyno said. Something in my life had changed and only I could tell. After that, I hit on the Toc. It takes at least three months to leave your system.

I have a discharge which I never had in my life. Like walking about with a wet nappy when I can walk. I am almost eight weeks off the drug, still with pelvic pain. No lack of esteogen now nor ever. One doc says mix Canestan 2% and a little Betnovate when it gets bad and cover the area. I do this and it helps for a while. I am waiting till the end of July and hope it clears then. It is a particularly strong drug and while I was on it I was allergic to antibiotics and several other drugs they tried.I never had a problem before. I also had two sore ears and head full of wax which is starting to clear using hot oil at night. I know it suits many but unfortunately, I seem to have had a bad experience and am waiting to see what is next. My RA has been fine since i came off the injection which has surprised me.

I hope Rebecca this gives you some insight into Toc and trust you are feeling well on it but please do be caredul. As I said I only found this site today and I know your post is a few years ago but I am sure there are many starting this drug. Read about Ro Acterma and just be aware of changes. I also hope my story might help others on Toc.

[Rebecca5 in reply to Kay3489]

Thank you Kay3489. My post was from last year & I made the decision not to go on it. My consultant did agree with me but I don’t have anything other than my methotrexate & pain killers & they don’t make a huge difference. It’s the choice I have made & fortunately my husband supports me. I now have to live with this choice. Some days are ok but most days the fatigue is terrible. I had a steroid a few weeks ago and at the moment I feel quite well & I’m praying I get a good while out of it. Thank you so much for your reply, take care & look after yourself x

[Kay3489]

Thank you Rebecca. I think you made a wise decision. When I read the side affects it really would frighten anyone. I really hope you keep well and glad you have, like me, wonderful support from your husband. All the best. Kay