Tocilizumab

I have had all my blood tests and x-ray, the TB blood test came back failed, the nurse said it was the test that failed not that I have TB. I was asked to go for another blood test last Monday, I am hoping all the results come back clear. I have no idea how long it will take to get the results. I was told that the Consultant will have to write the prescription when he has the go ahead and asked me to call the clinic when I have my first injection.

I am so badly flared at the moment after stopping Enbrel, I can't wait to start the injections. Does anyone know how long it takes approx to get the results? I am going to call the Rheumy clinic this Friday to hear if the test results are back and OK!! The nurse thought it could be Bupa at home that will deliver the injections, but wasn't sure. Then I have to wait for a nurse to come to my home to show me how to use the injections. I have used Enbrel pens and Claxane syringes so I am not worried about giving myself injections. I had to chase up the delivery of Enbrel pens and the nurses visit when I first started the Enbrel injections, which is why I am concerned about how long everything takes.

I went to see my surgeon today regarding my prolapsed disc and some good news is that he feels I no longer need surgery due to the bulged disc has shrunk which showed up on my last epidural in January.

Finally some good news!! Now if I can only get my RD sorted and hopefully I can start to feel more like myself. From the feedback I have had it is a wonder drug and most people start to feel better in 2 weeks.

Take care everyone and best wishes. S

6 Replies

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  • Hi Angel;

    I have just had my 8th Tocilizumab infusion. I live in Canada and don't have access yet to self injection, I go to an infusion clinic every 4 weeks for 2 hrs. I first felt results after about 3 weeks with visible reduction in swelling in my hand/wrist joints. By midway past the 2nd infusion I was feeling fantastic. I've had some flares but have mostly been much improved. My CRP consistently is 0.1 which is amazing!!!! good luck to you- Penny

  • Thank you for your reply, I think we have messaged before (not sure if it was yourself?) as I come over to Canada every year to see my family and I am considering returning on a permanent basis. I lived in the Toronto area for about 25 years. I was concerned about my health issues and being able to have the medications (Toci) in Canada. I know I have to be registered again for 3 months before I can have any medical treatment which I understand, and normal prescriptions are not a problem, but when it comes the Biologic's it is very expensive and I don't know if i have to have some form of medical insurance. I will try to find out more when I visit again later this year.

    I am really pleased to hear how well you are doing on this drug and hope you can get the injections soon if that is what you want. I find injections are much easier to do yourself and if working it saves taking time away from work.

    If I am approved for this drug I am lucky to be able to have it in injection form as it is much easier for travel purposes the same as Enbrel pens. Especially, when traveling overseas on an 8 hr flight. It isn't available in injection form in all areas of the UK as yet.

    I really do wish you well in the future and that Toci keeps working for you, I have had very positive feedback some calling it a wonder drug and how quickly they feel better like yourself.

    Take care, and thank you again for your response. Sue

  • Hi;

    regarding Toci payment in Canada, your Rheumatologist would apply for Special Authority with Not provincial medical, but yes you need to have a private plan, here in British Columbia I have blue cross- they pay the $2,000. monthly fee for Toc infusion. good luck to you, we lived for a few years in Ontario- beautiful province. best wishes.

  • Hi Penny, thank you for letting me know about the insurance required. I have been online check in and blue cross was one I will contact to get a quote. I am hoping to have 2 more infusions before I come over again. I hope to arrange for injections instead of infusions. Hope you are still improving with the infusions, take care, Sue

  • Hi Angel

    Mm angel delight, brings back child hood memories of fighting with my sisters as to who got to lick the bowl lol.

    I hope everything goes through for you and Tocil ends up being your wonder drug! It's good to hear others are doing well on it isn't it? It will be my next drug if I need a change.

    Take care KiKi

  • Hi Kikideelili,

    Thank you for your response, I am afraid it isn't the same angel-delight but I know what you mean I have older sisters and we did the same. It actually refers to my twin grand-daughters, they are my angels and both delightful at almost 9 years.

    It is really good to get positive feed back and I can't wait to get the all clear and start having the injections.

    All the best with the medications you are taking now, I will leave a post to let everyone know how I get on.

    Take care, Sue x

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