Hi, would those of you who are on / have been on Tocilizumab mind letting me know how you are doing/did on it please?

I'm due to have my first infusion next week and am a bit apprehensive, not least because there is still no firm diagnosis or explanation as to what is causing the problem with my replaced knee, femur and tibia. I've been googling (I know I shouldn't but can't help myself) and it seems as if the infection risk with this drug is more evident than with the anti tnfs. Have any of you found this to be the case?

Also, how quickly did it work for you? Although I'm a bit anxious about starting another new drug, I'm desperate to feel a bit better so part of me is looking forward to it and in any case I don't have a choice (spending most days in bed for over 12 months is not much fun).

Thanks so much xx

Hi

I hope it went well today,
The people I know on it generally have done well.

I had an immediate reaction and couldn't have it again.
But the nras helpline put me in touch with a nice lady on it.
She had long standing difficult to treat ra with other complications and yet responded very positively to the drug
Took a couple of goes to really start having any affect

But then, she's had a greatly improved life on it.

Much love and all the best

Thanks for the info Jenni x

Hi Jeg,
Hope all goes well today with the infusion, can't you use hospital transport for such a long journey, or is this what they've refused.
Best wishes
Sheila

Hi Diane

I haven't taken Tocilizumab (yet) but the patients on it at my hospital are doing very well. My rheumy says it will be available for injection next year, so you can do it yourself. I'm really sorry to hear you are still having ongoing problems with your replaced knee, tibia etc, that has gone on such a long time, you must be really fed up.

I wish you every success with Tocilizumab,I have everything crossed for you that it works.

I will be thinking of you next week when you have your first infusion. I can understand you feeling apprehensive, I am starting a new drug (cimzia) next week too, scary times!!!

take care and keep posting your progress.

Best wishes
Rebecca

Had 3rd dose of TOC another bad reaction after a few days worse than after the second.
Nurse suggested to stop (4th) next dose or try half dose. Tried half dose but had reaction again.
Seems that TOC is not for me. Got me an early appt with consultant ( Tuesday) to decide what
to try next (or what I'm allowed to have by NICE). Also might have an over active thyroid ( GP )
will have sort that out, when I can get an appt.
still not got help with transport costs but my friends from church have rallied round and worked it
that there will always be somebody available.

No more TOC for me. Rheum Doc has put a stop on Biologics for now. Thinks that there is more than RA to deal with, she didn't say what. Just going to run on Prednisolone until I see her again in October but i have to try and reduce the Pred from 20mgs to 15 mgs by then. She also wants me to attend the Pain Clinic so I have now got to get an appt with my GP for a referral. Waiting time for the Pain Clinic is 6 to 8 weeks. She did mention trying some meds for the pain that I have 24/7 and sugested Amitriptyline, but I have tried that before and it didn't really help. So she suggested that I should try Gabapentin and would write to my GP and should start it in about 4weeks time (that's how long in normally takes for a clinic letter to get to my GP). I have been informed that the Docs in the out patient clinics are not allowed to write prescriptions anymore. New legislation/protocol to keep GPs in the loop re what medications we are on. That's ok if communication is quick and if your letter actually arrives at the surgery.
At least no more trips to the hospital for now.

Thanks for the advice

Hi Diane

Really nice to hear how you getting on Diane, I'm sorry the Toxy drug is not working as well as you hoped, I was wondering how you were progressing with it. How long do they recommend it takes to work? Is there anything else you can take along side it? It's such a shame you had to come off the Enbrel with all that infection, how is your leg now?

Enbrel worked really well for me with zero side effects, I've had a rough ride with cimzia side effects so far, but hoping it's going to work. Joints look less swollen but still in a lot of pain because I have so much joint damage. I have my first lot of blood tests end of Aug since starting cimzia in June, so fingers crossed the CRP has reduced.

Take care Diane, really hope you see some improvement soon.

Love
Rebecca

Sorry for not getting back for a while and going on a bit.
My GP received the letter from Consultant who suggested that he write me for Amitriptyline for pain control, even though I said to her that it didn't work last time I tried it. Some times I think I'm talking to the wall at appointments. I agreed it try again but after one dose I was reminded me why I stopped it last time (3 years ago) a really bad nightmare, unable to walk without bouncing into the furniture on the way to the loo, dizziness and violent headache that lasted a whole day. Another prescription to return to the chemist.

Got an appointment for Pain Clinic this Thursday12th, so to see what they can do to help re pain control. I'm still on 15mgs of Prednisolone, just can't go any lower. Had to up it a bit this week as on Monday, while crossing the road in one of those very heavy downpours (drowned rat look), I turned my left ankle. Lucky I use a crutch to walk with so managed to pavement before getting run over! G-d it hurt! Took me ages to hobble back home and get up the stairs to my flat. The bruise has gone very Technicolor today, but I found it easier to get around. Something I can show them at the P Clinic.

See my Rheum Doc on 1st October. She's unhappy that she hasn't sorted my RA. It's not my fault that the 2 Biologic drugs I have tried caused me so many problems/side effects and I had to stop them! I also get the impression that she seems to think that a joint that isn't swollen doesn't hurt. Anybody else get this feeling with their Doc.