Tocilizumab concerns ..

[claireyj]

Hi I’ve not been on here for a few years , no other reason than time , work , kids etc , I hope you’re all doing ok 😊

Long story short had R.A. since 2014 been on Cimzia which was good but lasted 2 years then Benepali but due to odd allergies earlier this year I had to stop that too . I had a 6 month drug free holiday to clear allergies , concentrated on my diet (dairy free and v low sugar ) and wasn’t doing too bad until an 11 hour flight to the States and a chest infection ! The old R.A. presented in the worst flare ever and I’m currently struggling to walk , am off work and it’s now time to go back on meds . Had a steroid jab yesterday and am on 12.5 Methx and starting Tocilizumab in a couple of weeks ..

I’ve read good feedback and fingers crossed it works but my concern is weight gain as I’ve lost 2 stone this year and feel good for that at least . Please can you share your ‘honest’ experiences / side effects if on this biologic and weight issues , just so I know what I am facing .

Thank you so much

[rab1874]

I’ve been on it a few months now and all’s good and wellxx

[claireyj in reply to rab1874]

That’s great thank you , glad you’re doing ok on it too

[dwsurquhart]

I have been on tocilizumab for 3 years now. It has been great. It has taken my crp level down to between less than 0.2 - 3.0 from 159. It has kept it there. I started at 600mg per month infusion, now down to 280mg and all symptoms are still in check. My energy is still low, but overall feeling more useful. All I can suggest into try it. I was on all the dmards with no effect. Then on humira to a very bad reaction, then on Kineret (Anakinra) daily injection for 49 days to no effect. Started on tocilizumab and within 2 weeks I started feeling better. Had blood tests every 2 weeks for the first couple months to monitor progress and was very surprised and happy. This is the only RA drug I am on. I got off the prednisone, and dmards before starting tocilizumab so I know the drug works by itself.

Hopefully you have the same experience as me.

Cheers

Scott

[claireyj in reply to dwsurquhart]

Thanks Scott that is so reassuring , just want to get my whizzing around life back ! Have to with Xmas round the corner too ..

[Metal-legs]

Hi Claire

Go for it if it's been offered, I can't thank this drug enough. I've been on it over four years, other than blocked sinus, no other side effects except low white count from time to time. Not had a problem with weight gain on Tox. Managed to come off methotrexate, so I only take Tocilizumab and painkillers, no steroids.

I wish you all the very best and hope it turns your life around.

[claireyj in reply to Metal-legs]

Ah thank you , yes fingers crossed it works I’ve got to much to do !!! So pleased this medication works for you 😊

[Troygirl]

Ah Actemra! It is one that is supposed to work on the IL-6 receptors.

It was the 5th biologic I tried with no aval! Tried 3 TNF's and 1 JAK. Nothing has worked to date.

Only thing I got from the monthly IV Infusion of Actemra for 5 months was gaining 3 pounds per month!!

Every time I went to get my monthly weigh in the pounds just kept going up and up!

Just being honest!

But with these biologics, everyone is different and every person is different. Just make sure to get your weigh in each month and then you will know for sure.

[claireyj in reply to Troygirl]

Thank you .. I will stick to my healthy eating and hopefully being more mobile may help . I appreciate your honesty and am sorry you’re finding it tricky to find a biologic that suits you ..

[sophbug]

Hi I was on cimzia for 3 months just stopped it, for me it was really good to begin with, other then a headache after the jab no real side effects. But then my blood pressure went sky high and my weight just kept climbing, I stopped it to see if my blood pressure came down and it has 3 weeks later although it is still not back to normal. I definitly put on some weight around my stomach with this drug. But I also put on weight on enbrel and cosentyx so I think it's more a biologic thing, as for pain it worked for 2 months and then just stopped working where as the enbrel worked for 9 months.

[claireyj in reply to sophbug]

Hi sorry about your blood pressure that is annoying .. Cimzia lasted me 2 years and Benepali a year , it’s such a shame we have reactions or they burn out ! Thank you for your comments re weight .. I thought my weight loss was going dairy, red meat and sugar free but I’m now wondering if it was coming off the biologic 🤷‍♀️ .. I’ll let you know in a couple of months !! Thank you

[Agoodlife]

Seems like on the contrary, weight loss is a side effect.

drugs.com/actemra.html

[Troygirl in reply to Agoodlife]

Weight loss is's under the section of RARE side effects!

I was on Actmra and gained 3 pounds each of the 5 months I was on it! That's 15 unnecessary pounds for a drug that did not even work for me!

[Agoodlife in reply to Troygirl]

So it seems. But all the side effects listed would certainly keep me away from this med.😳

[KittyJ in reply to Agoodlife]

But don’t all meds come with a long list of possible side effects Agoodlife? What meds do you take ?

[claireyj in reply to KittyJ]

Yes they do you are right there are side effects to every drug even paracetamol and sometimes AGoodlife you have to weigh up life quality especially when you’re in your 40’s with a young family..

I’ve tried holistic , drug holidays , elimination diets that are all beneficial but no way powerful enough for this disease unfortunately.

[Agoodlife in reply to KittyJ]

There are GREAT differences. You need to choose depending on many factors which risks you are willing to take.