Starting yet another Biologic

[Luthien66]

Hi everybody, not posted for sometime now but just wondered if anyone is on Tocilizumab. My rheumy has suggested I go onto this biologic now (number 4), as Rituximab has not worked as it should. Would really appreciate any comments, good or bad. Many thanks 😊

[allanah]

Exactly like me. I had my first Tcz last month. Brilliant feel like a new person after all the other ones I had so many problems. Got flu on holiday so couldn't have this months yet

But I'm feeling so much better and every one is say I g how well I look after 4 years! Hoping this is it! Xx same for you too!

[rokia]

Yes I'm on it I was on etanerceot and methotrexate injections then the etanercept stopped working I did not realise how much the toxicillimab worked for me but I had a chest infection and had to stop my injections for 3 weeks that's when I got very sick. I definitely feel better with toxicillimab you should be ok on it too

[Luthien66 in reply to rokia]

Thank you for your reply rokia, sounds very reassuring.

[ruth_p]

I've been on tocilizumab for nearly two years now. It has been brilliant for me. It started working after 24 hours, my Humira had stopped working completely. My CRP went from 179 to 0.3 in a month. The only side effect I've had is bruising more easily. Good luck 😊

[Luthien66 in reply to ruth_p]

Thank you ruth_p, that's really good you are doing so well on Toci. If bruising is the only side effect then i can live with that

[carol555]

Hi, can I just ask if you are taking this biological on its own or if you are taking it with any dmards? Thanks

[allanah in reply to carol555]

I take sulphasalasine and leflunomide and plaquenil plus Tcz

[Luthien66 in reply to carol555]

Hi carol555, it'll be on its own as I cannot tolerate the Metho side effects and a lot of the other dmards didn't work so rheumy won't put me back on them.

[carol555 in reply to Luthien66]

That's good to hear as I am probably going to have to come out of a 3 year clinical trial that I gave been on as it's not enough on it's own and like you I haven't been able to tolerate methotrexate or Leflunamide and have just started on sulphasalazine so just hope this works . Thanks for your help x

[Lynnels]

Also taking tocilizamab IV monthly after going through all the oral and sc stuff over a period of over 4 years with absolutely no effect. At first my consultant wanted me to carry on Methotrexate as well ( which had never worked) but because my ALT continued to rise and rise and I was so poorly one time and saw another Rheumatogy doctor who said it was 'old style' to keep me on it and there was no evidence Tocilizamab worked better with it, I came off it. After a few months the difference was remarkable (after ridding Methotrexate) 2 years on still going strong with RA in remission and only (??) left with pain from the other things I've developed over the years as a result of RA (trochanteric bursitis both hips, fibromyalgia etc) Good luck!

[Luthien66 in reply to Lynnels]

Thank you Lynnels, it's so good to hear when someone is in remission. My rheumy has said it'll be self-injection pens. Wonder if I should ask about IV instead.

[Lynnels in reply to Luthien66]

Hi Luthien. When I started this there was only the IV version although my consultant said there was a movement towards manufacturing it for sc self administration. Guessing that's now available. Having gone through so many skin reactions and never finding a sub cutaeneous drug that worked in 4 years I will be fighting to stay on the IV. An hours infusion each month is for me a much better option, and more importantly it's the only thing that's worked. Good luck!

[cathie]

Out of interest how is it administered?

[allanah in reply to cathie]

I got a choice between weekly injections at home or monthly infusions. I chose infusion as it's only an hour and I already have four injections a day with my diabetes and feel like a pin cushion!

[cathie in reply to allanah]

Thanks! I'm feeling like a pincushion too and am planning to visit the pharmacist today cos he's got a blood sugar monitor patch which does continuing monitoring which you can download to a phone. If you're interested I'll let you know. Inevitably there's a catch I don't think it's available on NHS but I can check.

[allanah in reply to cathie]

Yes please!!! I just started a new tablet calked something like ivanka.

My sugars in the last three weeks of starting it gone from 28 to 4.5 !! And I've dropped my insulin from 26,12,26 to 12,4,12 !

Overjoyed and I think the Tcz has cut down the inflammation at the same time so sugars much better. Seeing doc again Wednesday for more tweaking of dose. 😀😀😀

[rokia in reply to cathie]

Cathy do you have the pharmacists number? My son has type 1 diabetes and it would be great if he gas a patch instead of pricking himself four five x daily

[cathie in reply to rokia]

I've checked Diabetes research uk website and it seems the detector has to be put under the skin. It's quite expensive too. If you check you can find out more there. What part of the country are you?

[rokia in reply to cathie]

London NW9

[cathie in reply to rokia]

freestylelibre.co.uk/libre

I spoke to the pharmacist this morning. This is what he uses, its quite different from the one I referred to above. Its a patch which you put on your arm and he goes swimming with his kids with it on. I think there is something that breaks the skin, but he says he doesnt feel it. And its not incredibly expensive, though not yet on NHS. He reckons its only a matter of time before it is, but my fingers are like pincushions so I'm going to order one today. The starter pack is about £120.

[rokia in reply to cathie]

Great ! Please send me the details when you order it ! I'm definitely going to get it for my son

Take care

[cathie in reply to rokia]

The details are in my previous message. I've ordered it online and you can check it out there.

[cathie]

I'm in Edinburgh. It might be better if you asked your local pharmacist. I was put off by the process for inserting the monitor under the skin to be honest. It has to be done weekly.

[Nitrobunny]

Hi! I have been receiving Actemra infusions every four weeks since last September and the results have been life changing. I cannot take MTX anymore as I developed serious allergic reactions to it having been on it for ALL (leukemia) off and on for years, over several relapses, in and out of remission several times. In addition to RA I have PMR and GCA and the Actemra has kept them all in line. Some rheumatologists are using it off label for GCA and PMR. My labs have been a little squirrely but they too also fell in line. For the first time in decades I'm not anemic either so I am hoping my luck continues to hold out with this drug. I feel really well, balance and endurance are improving. I still wake up stiff and sore but that passes in about half an hour. I can definitely tell when it's within a week of my next infusion because I do degrade and sometimes will start to flare.

Best of luck!

[Luthien66 in reply to Nitrobunny]

Thank you Nitrobunny, so glad you are feeling much better on this drug. I hope I get the same good results. Like you I cannot take Metho as cannot tolerate the side effects so will be taking Toci on it's own....fingers crossed...

[scotslass333 in reply to Luthien66]

I'm reading all your replies with interest, as I may well be on Tocilizumab later this year - nothing else has helped and like you couldn't tolerate side effects /reactions. In January my consultant said let's try Abatacept first and Tcz if Abat doesn't work. Too soon to tell, but I bet Tcz will be THE one! Good luck with it. All the best. S.

[Luthien66 in reply to scotslass333]

Let's hope for both of us we find "the one". Will post an update once I start it.

[Afcbsupporter]

It was the best thing ever for me. I was originally one of the guinea pigs for Toclizumab before NICE/NHS agreed. I felt like a different person & it always worked the whole time, never wore off at the end of a month. Unfortunately I had to come off it after several years due to the liver results in my blood tests, and haven't found anything as good since, having tried various other medications. My consultant said he would discuss with colleagues about trying it once more, this was last Jul/Aug but he is now ignoring me & not seeing me himself, which I expect is due to budget. Since a change of consultants at my hospital Im beginning to think because I am saying I am now in a lot of pain I am now one of those 'Moaners'! Iv now had RA for 40years, have a very high pain threshold yet am sure I know when Im in a lot of pain!

[Hybrids]

Started self injecting weekly tocilamaub 12 months ago no pain since but very tired in afternoons, reduced my prednisone to 7 mg and taking 400mg hydroxichloriquine not doing to bad blood pressure went high and still is and feet swell but no pain