NRAS
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Tocilizumab

Hi all,

I was diagnosed with RA approximately nine years ago and started off on Methotrexate, Prednisolone, Sulphasalazine and Hydroxychloroquine. I gradullay came off steroids. I was placed on Humira (sub cut injections) approximately five years ago. I eventually stopped Methotrexate in 2015 (I was glad I did as I had some horrible side effects). Humira is no longer working so well and my rheumatologist has suggested I switch to Tocilizumab.

I have a choice of a four weekly infusion at the hospital or weekly sub cut injections which I administer myself. What are people’s experiences of both and which would you recommend?

I got used to using Humira in a prefilled ‘pen’ and am a little nervous of using a prefilled syringe instead. I live alone and there is no one else to give me the injection for me. Does anyone know if Tocilizumab injections sting?

I remember when I first started Humira it used to sting like crazy. It’s funny because I don’t have a needle phobia at all (I wouldn’t get very far with RA treatment if I did) but for some reason I don't know how I’ll get on with a syringe rather than a pen.

Also what are people’s experiences of the side effects? I really am hoping that it won’t be anything like MTX.

If anyone has any tips or advice I’d be glad to hear it.

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Hi Kayleigh, Humira stopped working for me too and my consultant has suggested I go onto Tocilizumab. I've received delivery of my first batch of injections today. I now have to wait for a nurse to come and show me how to inject them. The pack includes lots of info and a dvd.

I can't say I'm overly worried about injecting after being used to injectable mtx and Humira. I worry more about new unexpected side effects but fingers crossed it'll all go well.

I don't know how you've been since the Humira stopped working but I've been really struggling so to be honest I'm ready to try anything in the hope of regaining control of my body.

I wasn't offered infusions but even if I had been I would have opted to self inject. I find parking etc at the hospital a royal pain so welcome anything which cuts down on time spent there.

Good luck with your decision. I really hope it works for you x

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I don't know if this is the same everywhere paulywoo, but when I go for RTX infusions I get free parking as it's done in the chemotherapy unit & there are plenty of parking spaces. It's only 4 times a year....so not too inconvenient.

But anyone offered infusions should check parking first. My infusions take 7+'hrs, so it could get very expensive!

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Hi Kayleigh, I don't personally have any experience with Toc, but would stick with sub-cut purely for convenience purposes. I was on Humira sub cut for 10 years before it stopped working for me too and I used syringe before the pen was on offer; I converted to pen but have to say I actually preferred the syringe and felt it stung less. Sure the needle isn't covered as it is with the pen but it really is a tiny needle. I feel confident you will be fine, give it a whirl xx

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Hi Kayleigh, I have had Humira, Tocilizumab and Entanercept I’m now taking Abatercept; I have had pre-filled pens, pre-filled syringes and infusions personally I find the pre-filled syringes easiest to administer as they’re not too big and you have control over them. I don’t remember them stinging, I used to feel incredible tiredness (more than usual) after the infusions. Good luck I really hope it works, gives you relief and I hope this is helpful too. Take care x

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Hi Kayleigh, I too had Humira that stopped being effective and was really ill on Methotrexate. I have the Toci infusions and they are great. I was offered to self administer but when I used to have to inject myself with the Humira my stomach would swell and be really itchy at the injection site for weeks, so rather the infusion as feel I would be reactive again if self administered the Toci. I do still get tired the next day but it has got a lot better after the initial few months after starting it ( approx 6 months). It has raised my cholesterol level up to around 6 but as I don't drink or smoke and am not over weight and have low blood pressure I don't have a problem being above the recommended 5. I hope you get some relief from Toci, it took a while to become effective but my bone scans show my bones have ceased/slowed being destroyed by the RA, so win win. Everything is a risk, I just don't think about the consequences, not because I am in denial but more over - the comparison between the present and the future is like this - I am able to move and undertake small tasks with thought 'now'....what happens in the future is in the lap of he gods, right now I just want to slow the dis-ease and minimise pain and inflammation :) Been on it nearly 5 years now. Good Luck xx

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I am on Tocilizumab and have the infusion at the clinic every 4 weeks. It is awesome. Gives me an hour to just sit and contemplate life or converse with others who are having their infusions as well.

Why did your rheumy suggest an IL6 inhibitor from the anti tnf of Humira?

They work on two totally different cytokines in the human body.

Is your CRP really elevated? If so then there is a correlation between CRP and Interleukin 6.

My CRP was 152 or 159 when I started Tocilizumab, within 2 weeks it had dropped to 1.8 mg/L. A high reading is around 3 mg/L.

For side effects of the tocilizumab I have been having very tight tendons (eg. My Achilles has felt like it was going to snap for a couple months. Reduced the amount of infusion and the effect stopped. I have had a very tight neck, again reduced dose and neck tightness has reduces as well. Major side effect is I retain a lot of water after infusion. I take 10mg Lasix (furosemide) for 3 days post infusion and the bloating goes away as well as the 11 pounds I gain from 250ml of saline.

Hope you like this stuff as much as I do.

Cheers and good luck

Scott

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If you have already given yourself the humira injections and mtx injections, the tocilizumab is the same sub Q at home.

Scott

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Hi, I have been on tocilizumb since May after another drug failed to work. I go to the hamatolgy ward and the drug is done via an infusion drip which takes 1 and a half hours to do. I go every 4 weeks. I can drive myself their and back. The first couple of times I felt very tired and sick and needed to lie day for a few hours after.

For me it worked instantly it was like magic. The way may rheumatologist describe it to me was the last 2 yrs my bloods inflation marker was always 200 to 300 but should be 8 0r under. After the second round my inflammation marker went from 270 to 6. So my rhuemy said my bloods were back to normal.

I have not heard that it comes in injection form. And was not offered it that way. Am a bit like you I can do the pens but an actual syringe freaks me out. I hope this helps. Good luck with it all.

Sarah

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I am now on the injections after having the infusions which took a day after getting to the hospital and waiting to be sorted out out, this sometimes took an hour at worst it took five hours before either starting the infusion as my drug was sent to the wrong ward! The injections are not quite as easily as the humira ones but the nurse who showed one how to do them had a dummy one to practice with first, then she slowly told me how to inject the actual one. This sometimes hurts but nowhere near as painful as the humira was, the is no stinging or even a red lump afterwards the pain is from inserting the needle but I have found my stomach is a lot less painful and sometimes I hardly feel it. The infusions left me bruised a lot as they sometimes struggled to get a vein so that I could no longer have it in my hands. Make sure you leave the injection out of the fridge for 30 minutes beforehand and I find using a mirror to look into rather than looking directly at the syringe when injecting helps me

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I too started on Humira many years ago and worked my way through a couple of other biologics over the years. Now on tocilizumab although my husband has to give me the injection as I don't have the strength to push the syringe. It's is a different type from previous biologics. Although I have never been offered an infusion - perhaps because I still work and it would mean taking time off.

Tocilizumab has been very effective and I have very little side effects, but I will say I was injecting several years (with Humira) before I was told to allow it to reach body temperature before injecting. What a difference that made! From that point on I have never had any soreness, stinging or redness at the injection site.

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I used to have to have it by infusion but got the choice of injecting so i opted to inject more convenient just make sure you leave it out the fridge half an hour before you take it and it will sting less good luck

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Hi Kayleigh,

I see it has been about 3 weeks since you posted this, so you may have already made your decision by now. I had a similar experience to you, having tried Sulphasalazine , then Methotrexate (horrible!). When this stopped working, I was given Cimzia, which helped a bit, but stopped working after a while, then Enbrel, both by home 'pen' injections.

Enbrel didn't really work for me either, so I was first put onto Tocilizumab infusions, and after about 2-3 months, I felt so much better - less pain, more energy. After about 18 months, I was transferred to home injections, which seemed more convenient initially, but after about 3 months it seemed to stop working. I reported this to the consultant, who said I wasn't the only one who had found this, and that I 'might' be able to go back onto infusions.

In the end it was an upcoming holiday abroad that pushed me back onto infusions. We were going to be touring round several different locations, including 2 internal flights, and I couldn't see how I'd be able to store the injections at fridge temperature for 3 weeks. I asked to go back onto infusions, and then had one just before our holiday, with the one 4 weeks later being just after we got back.

I've recently done the same again, with another 3 week touring holiday abroad, by getting the lovely nurses at the infusion clinic to book all my 4-weekly appointments several months ahead, so I could plan the holiday dates to fit. I know I'm lucky to be well enough to do this, but it worked brilliantly for me.

I hope whatever you choose, that it works as well for you. Sue x

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