To Toc or not to Toc? That is the question

To Toc or not to Toc? That is the question

On 15th Aug 2013 I had my first Tocilizumab infusion as part of a blind trial to taper methotrexate with this drug.

Previous to this since my RA diagnosis starting May 09 I had been on Methotrexate, HCL, NSAIDS and occasional corticosteroid treatments by tablets or injections,

For 16 months my CRP and ESR went down to 1 & 2 and it seemed as if Toc had worked a miracle.

Now I'm not so sure.

On 6th Nov 14 I was admitted to hosp. with cellulitis in my elbow and after three days on antibiotics normal service was resumed.

Unfortunately though over the last few months a gradual deterioration seems to be in progress whereby several side issues such as flare ups of vasculitis on legs, nodules under skin in pressure areas like back of thighs, forearms etc and raised swellings on head, as well as worsening pain and stiffness, fatigue and weakness generally to the point where walking was uncomfortable especially down hill, and getting out of chairs or up stairs equally difficult without mechanical aid.

So back to the Consultants and steroids for eight weeks and of course all is now fine with no inflammation,stiffness swelling, fatigue, weakness or all the other annoying issues.

Oh that I could stay on steroids. Dream on!

After discussing change of biologic I have remained on Toc for the moment to see if everything settles down.

They want to try me on Rituximab but even with odds of 25000 to 1 against getting PML ( reactivated JC Virus and always fatal) I am not prepared to play Russian Roulette with odds that would be great for the lottery jackpot.

I wonder about Infliximab or one of the bio similars but as yet this option has not been discussed.

They tell me that sometimes drugs become less effective over time.

Has anyone else had this experience?

10 Replies

  • Harry I can't really say that I know much about these infusions but all I can say is that from my personal experience apart from Humira biologics have not worked for me. My doc did want me to try and go on these infusions but unfortunately because I suffer with hypothyroidism I was not keen to start these infusions especially because I am well aware that they can make you tired etc.

    I well aware that biologics can work for some people for many years and others they may only work for a short period of time. It is really an individual thing.

    I guess this is the main reason why I started seeing a rheumatologist that is a functional health practitioner because I had ran out of options and did not know what else to do anyway the best advice that I can give you is talk to your dr and do what is right for you. Good luck.

  • Hi I have had enbrel Humira mtx leflunomide sulphasalasine abatacept infusions steroid oral and infusions Remicade infusions and now on Rituximab infusions and Arava orally. Waiting to add mtx into the mix after I recover from a hand op.

    I find for me personally I have had few side effects apart from with Remicade where I had bad reaction during the infusion and on abatacept I got drug induced lupus. But even then I felt as tho the drugs were not too severe if that makes sense.

    My main problem has been I get a good reasonable help with the infusions for the first few months but then it wears off and by the time I'm due the infusion again I'm begging for it!

    Yes if only I could live on steroids!

    Lovely photo, is that you and your family ??

  • Just the boys. Two daughters were not with us when this was taken. Thanks for your comment. Hope you find more permanent relief soon

  • Sorry cannot help with your question to new to this myself.

    Just wanted to say stunning scenery Lakes? Scotland?

    Hope things improve for you.

  • Thanks. Lakes, and best of luck on your journey down Rheumy Road. Plenty of pot holes on way but stick in there. A cure is coming

  • Oh thanks.

    Yes long journey but this site helps a lot.

    Love the lakes.

  • I think my body does get used to a medicine. I believe both Gold and Enbrel worked for around 7 years each before I had to change. Although some biologics have not worked for me - Humira, Ritux, Toc - they have not given me any side effects and personally I have more issues with DMARD's. Currently on Abatacept weekly self injection so hoping new discoveries will be made soon as I have very few options left at the moment once this fails. Farm

  • Thanks for the reply. Biologics can take weeks to work but steroids bridge the gap often with incredible results. Pity they are only a temporary fix. Sure there are new meds in the pipeline and biologics are making old ones cheaper as patents expire. Good luck.

  • Sadly yes, I have just come off embral (etanercept ) after 3 years as I t had stopped working. I had a really good reaction to start with and had very few symptoms, flare ups or side effects. Unfortunately over the past 6 months, I was having more and more flare ups and at my last rheumy appointment, my disease score was back up to pre treatment. I'm now off everything for a few weeks, waiting to start toc! I hope it works better for me than for you!

  • I'd like to officially complain about my stupid body as well after reading your posts as steroids have very few positives and lots of negatives for me. I can't tolerate oral steroids as I get such bad vertigo and nausea I can't stand without throwing up and steroid injections only make a minor difference to me. I also developed a mild case of soft tissue atrophy after the last steroid injection and now I have a small odd coloured crater on my bum. Attractive. Not only does my stupid Damn body attack itself, it also has an odd ra profile, becomes tolerant to meds quickly and intolerant to steroids. Apparently it's not even being ill properly!

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