Tocilizumab - Has anyone had....

[Pmr650]

Hello

I had my first infusion of Toc! On January 11th, it was ok needed to have the infusion slowed down as I became really Anxious, and had a bit of a Panic. It took nearly 2 hours and I felt a bit wobbly afterwards, very light headed and dizzy but it passed quite quickly. Two weeks in I had a DVT scare again, it wasn't it was my old friends Ruptured Bakers Cysts, both Knees this time, so had to have Aspirations of Both and Depo Medrone pumped into both! Grrr...tried to avoid these as I seem to have had far to many, but the Pain and inability to move around got to much...anyway, due another Infusion next week, but am really Anxious about it and have been feeling like I have been having Hot flushes for the past week, which I really hate, also my vision seems to be getting worse, has anyone else experienced these type of side effects, I also feel, quite depressed and anxious, whilst the Toc was active I felt so much better in respect of my Mood, but still had pain, early days I know, it will take time, and I desperately want this to work. My Consultant has been Fabulous, giving me his Email to stay in touch and rearranging my appointments so I only ever see him, he even came in to do my knees! At last continuity of care after 8 months and 12 different Consultants and Regis!

My consultant says it's nothing to worry about but I am very worried.

Any advice or feedback would be great.

Thank you

[scotslass333]

I'm waiting to start Tocilizumab so was interested to read your post. My Rheumy told me I can have it by injection, self-administered - not infusion. I too get very anxious, so hope this is not a common side effect !!! S.

[Pmr650 in reply to scotslass333]

Hi scotslass, my Rheumy tells me it's not! Ummm but then apparently everything I experience is nothing to do with the Toc! It's my Anxiety! To be honest I felt really calm after having the Toc for the past 3 weeks it's only now that my Anx has started again, the half life on Toc appears to be 14 days, so he says it's probably because it's wearing off! I've had 160 shot of Depo to in Knees the happy drug Not always, so should be buzzing happy happy...As well only a couple of weeks ago. Try not to worry easy said I know my Rheumy recommended Infusions so I could be monitored closely and was at my last one, he said it was more controlled! And better for me because I was so frightened of Toc and the side effects. Good Luck with the Toc, I'm back Tuesday for the next one! 😊

[scotslass333 in reply to Pmr650]

Hiya, well it could be different in Scotland I suppose, only saw Rheumy last week and not heard anything else about how to get the drug, or when, yet - but she was definite that it's now available as injections, she knows I live a long way from the hospital you see. Not that I'd have minded going for an infusion, chance to lie down, lol !

Anxiety is horrible, so I know how you feel - you have the dread of it coming on again. I used to rely a lot on Diazepam, but pleased to say I'm a good bit better these days, just cracking up physically now!!

Good luck to you too. xx

[Pmr650]

Hi Scotslass

Yes it is available in Injections, I believe from reading othe posts they are delivered directly to you, how not sure! Think my Rheumy is just very cautious, as I reacted so badly to all their lovely DMARDS...not sure If injections have reached us here yet. Totally different in Scotland I bet, my best friend lives in Douglas, love it when we visit, I'm in the south east near London. Hope everything goes really well for you if it's any use the reviews I have read seem to be really good for the Tocy! My consultant has 51 patients currently on Toc, he thinks it's one of the best! 😊😊

[sarah2110]

Hi there

I had my 28th Tocilizumab infusion on Friday and have to say keep with it. I had and still do have a number of side effects which start during the infusion and go on after it. I have a pre med before my infusion to dampen the side effects - headache nausea anxiety- but it doesnt make much difference. You just get used to it, i know that doesn't help much to you now, i know that i havr these side effects so i am prepared for them and accept them when they happen and any that dont appear is a bonus! I also have my infusion on a friday becaise of these side effects as it then doesnt interfere with my work ( i am a primary school teacher) as i would need the day off after it due to the side effects!

Tocilizumab has reduced all my blood readings within 3 treatments and i do in general feel better for it.

A lot of people say it takes a week to work and then wears off so you only really get 14 days. Mine depends on whats going on in life i find sometimes i am longing for the friday to come to have the infusion and other times i dont notice the days.

I am continually offered the self injections which are weekly however i am chicken and cant self inject! But check with your rheumy nurse she may be able to advise you.

Give it a chance and the blood monitoring that goes on by your rheumy will decide if its making a difference. Accept the side effects as this drug has made a difference for me.

Good luck sarah

[Pmr650 in reply to sarah2110]

Hi Sarah,

Thank you for your words of encouragement I really want to stay with the Toc, I'm just one of those overly cautious people in life, I can't take NSAIDS because of severe allergic reactions so only have Paracetamol as my primary painkiller! Which I have to say is beginning to not make much difference to me. I'm definitely not going to give up on it, as it is such early days and like everyone side effects are part of the course! Unfortunately I'm very impatient really hate the restrictions RA has placed on my life, once I was really active, cycling, painting and decorating, running my cottage industry Cake Decorating Business Hobby, not my source of income. I'm a full time stay at home mum! So bored nowadays being so limited by the daily pain! The only relief I get is from the Depo Steroid injections but they have there side effects to! and I have literally been given so many over the past 9 months due to constant flares.

It's really refreshing to read you've had 28 infusions! And that they are improving your quality of life, despite the side effects. Have to say a huge thank you to you Teachers are true True Heros in my book, you do such a sterling job. Unlike my normal field Accounting! Boring!

Have bloods this Friday ready for next Tuesday's infusion, will try and stay relaxed this time. I know what to exoect this time! Yikes it's the Needles! Like you hate the thought of injecting myself, needle aversion I had to have some at home for suspected DVT a while ago I made my Husband give them to me, I just can't do it to myself. Hoping there may have been a slight improvement in my ESR & CRPs this time as before they had risen considerably.

Thank you again for you reply.

Best Wishes to You long may you recovery continue

Paula 😀

[sarah2110 in reply to Pmr650]

As i said im a chicken when it comes to needles. My most stressful part of the infusion is getting cannulated i have been known to take 8 attempts to get it in!! The nurses run away when they see me walk in! Although in the last six months they now also do my bloods for me so i dont need to get stuck with another needle to get them read!

I understand what you mean about painkillers i have got to the point where i dont bother now as nothing seems to touch the pain. I do use a lot of kinesiology tape on my joints mainly hands wrists and elbows which helps some what.

Thank you for what you said about teachers but its no more important a job than anyone elses especially not being a mum!

This disease does make such a huge difference to your life and sometimes it feels like you go one step forward and two steps back but keep strong. People on here are great for advice and encouragement and just when you just need to vent as not everyone at home can understand what youre going through.

Good luck x

[sueathome]

Hi,

Hope you can get on with the Toci, as it's been great for me. After trying Cimzia & Enbrel (home injections), I was put on Toci infusions 2 years ago, and gradually felt better, without all the associated chest infections I'd had with the others. After the first year, I was told I was being put onto weekly home injections of Toci, and assured it would work as well. After 3 months I was feeling worse again, and when I mentioned this, I was told I wasn't the only one. I asked to go back on infusions, and they eventually agreed, so I've been back on them since August, with definite improvement.

I have to confess I am quite the reverse about other meds, as if there's something out there to reduce pain or help live more normally, I'll take it! I'm on Arcoxia 90 (nsaid) and Tramacet painkillers (a combination of tramadol & paracetamol) which work for me. I take Lansoprazole to protect my stomach as well.

I hope you can relax and manage the Toci infusions - just try to imagine happiness & health flowing into you! I always take a good book, and the hour flies by. I've been told to always, always drink lots (water, tea, coffee all fine) before, during and for 24 hours after the infusion, and although I can get a mild migraine the next day, I have Sumatriptan on hand to deal with it before it gets a hold (I've had migraines for years anyway.

Wishing you all the best, Sue

[Pmr650 in reply to sueathome]

Hi Sue,

Thank you for your words of encouragement very much appreciated I had the second infusion today after a fashion appointment booked for 10:00 am finally got my treatment at 1:00 it was awful 3 hour wait....but had it done and it went ok just felt s bit tired and a slight headache. I really hope it works there was an improvement in my CRP down from 69.8 to 42.2 but WBC slightly raised probably due to Steroids I had for Knees. I so want it to work.

I do imagine being back to fairly normal life I try now but think I may try to hard sometimes and exhaust myself. My first Granchild is due in 9 weeks, so looking forward to his/her arrival. I also have a 15 year old doing GCSEs at the moment! Life is busy, sometimes challenging. Just need to stay focused on going forward.

Have good relationship with consultant that's a bonus can always email him and he answers, he is very supportive so I'm lucky in that respect now, mind it took 8 months off being passed from one to another to get to where I am now, it was awful.

Thank you Again for taking the time to reply, your very kind. Wishing you continued success with Toci.

Paula 😊