Here we go again !!!!

Going in on Tues 22nd to get my dose of tocilizumab,yet another drug that my body might decide its not going to like.i have reacted one way or another in a to everything so far,sometimes in a sreious way,after reacting badly to Humira (I had a very severe case of shingles)they wanted to start me on gold injections straight after my bout of shingles ,I told my consultant that i wanted timeout to let my body recover properly and try and build up my immune system,although they were not to pleased with me I felt its what I had to do,I asked if I could be given Kennalog if I needed It meantime, was told yeah no prob.... Well here I am in a 2 month flare up asked if i could get inejction and got told no.. need treatment....anyhoo i no i must be going on and on but god am i sore,tired and so frustrated how horrible is it having a 20 year old mentality stuck in a 99 year old body, :-) just trying to get them to meet half way cos my head is not friends with my body right now lol, So now they have decided not to try me on gold but try Tocilizumab anybody on it just now.

7 Replies

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  • Good luck with it!

  • That's disgusting, its blackmail................. it's your body and you have a VERY valid reason for not wanting to start on something so soon after having a bad reaction to the last.

    My Roomy is ticked off with me because I have refused to go onto Enbrel after researching the side effects. Talked to me like I was a stupid small child (I am 52). Good luck

  • Sorry to hear of yr troubles.

    If it helps, I reacted badly to all the stuff they gave me!

    MTX, Sulfasalazine, Hydroxychloroquine...and the latest - I had a steroid injection end- Feb, and a few days later ended up in hosp for 2 days after a steroid-induced seizure! (Like an epileptic fit, but I'm not epileptic!).

    GP said I won't have another fiit when steroids out of system, and they're gone now! I refusef to take Leflunomide cos it can raise blood pressure, and I have high BP. I'm not very popular with rheumy but what can u do? Oh boy!

    Am waiting for appt with rheumy, hastily arranged this week for mid-June.

    Am telling you all this cos it may help you to know others have probs with meds too. Hope things improve for you. All the best.

  • tociluzumab is an anti tnf and v expensive try to keep an open mind it can give good results and you may not have any problems.

    I am the gold injections myself( I had problems with some of the other dmards)

    but after a long time I suddenly realised I was a lot better, it was v gradual( gold does take longer than some of the other Dmards but I am doing ok and side effect free x

  • Like the other people on here commenting on the consultants giving people lack of choice, I had the same problem.. leflumonide was thrust in my direction and I said no as my blood pressure though not medically high is quite high, plus I knew some one who was poorly on it!. and having been poorly on two other DMARDS!, I had done my home work too. my profession is pharmacy and I would have liked enbrel or humira ( two of the slightly cheaper newer generation drugs.. one of my Gps who calls me by my first name when he sees me and talks to me very directly and openly( he knows my Job!) thought enbrel would be a good choice too!.

    Now the other problem is this I get to go to pharmacy team meetings and at one of them the director of pharmacist said we must stop the rhuematologists using these expensive drugs!. The up shot is the consultant and I work at the same cash strapped hospital trying to make budget cuts!

    After a bit of stand off had to compromise on the choice of gold injections, I was sulking I said that I didnt find the sudden death side effect very attractive

    ( a small number of people suffer a fatal anaphylatic reaction to gold( at my first injectiion they had hydrocortisone and andreneline injections on standby x

  • Notsobendywendy is a great descriptor! But sorry to hear that you're struggling, and not bendy. I'm on DMARDs, but interested to know how you get on as since NICE changed the guidelines to allow Tocilizumab more readily, it might be in my future. It does seem to be one that works in a different way to some of the others, so hope it'll be the one for you. If you've been flaring for a couple of months you deserve a break. Good luck. Polly

  • Hello there,

    Ive been on Tociluzumab for 6months now,going for my 7th on Tuesday(22).I have been very lucky to be able to have stayed on this for this long as it sure is an exspensive drug.But as i have said to my Specialist ive had 7yrs of the horride Stills disease,im also on Alendronic acid/methotrexate/sulfasalazine/steriods etc etc and have been for the last 7yrs,i just woke up one day 7yrs ago and that was my 33yrs of fun/work/family gone...I had to give up work and long haul holidays and the finer things in life.But since being on Tociluzumba my CRP were 29 then just one treatment went down to 2,My ESR were 28 again one treatment down to 2.

    When im in a flare my CRP is 122 and ESR 54,so for me it seems to be working.I wish you well for your first treatment,i was very unsure but needed to do something to get my life back to as normal as i can,im incharge of MY life not my Stills.Let me know how it goes

    Take care

    Be stronge

    E x

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