Off Tocilizumab, on Humira, who has experience with it?

Hi to you all,

I have to stop with Tocilizumab and have to start with Humira, only after 14th of october, when I get a wrist replacement, a new wrist.

Have anyone experiences with Humira? I also have to stop temperarely with sulfasalasine due to bad liever blood results. So

I am only on prednisolon now.

Wish you all the best!

XxxBas

21 Replies

oldestnewest
  • I used to be on humira for 18 months of which 16 were great, no side effects and I felt really good. No tiredness and hardly any pain. I am now on tocilizumab which although lowering my crp and esr to below normal I still have not felt as good. Also my infusion on Tuesday has left me with a flare so that I have been unable to hardly get out of bed let alone getting to work. Hope humira works as well for you.

  • Hi Ozzy,

    You went the opposite way! My Rheumy told me that in the case of Tocizilumab the CRP is allways good because it settles on another proteïne than Humira. It settles on the IL6. So the CRP is not reliable anymore. You can still have flare ups while your blood samples seems okay. It is also possible to develop infections which cannot been steen in your blood. My Rheumy told me it is very important to say to your GP or at the Hospital that you are on Tocizilumab in case of fever etc.

    Maybe you should ask your Rheumy about it.

    Thanks for your reply, wish you all the best.

    XxxBas

  • Hi...I was on Humira for a few years...really good ,no side effects. .but stopped being effective. ..now I have been on Cimza along with Arava every second day for the last 3 years..so far so good...good luck...Wendy

  • Hi Wendy,

    Thanks for your positive reply!

    Have a nice weekend.

    XxxBas

  • I've been on humira since April 2014. It took about 6 months to get the full effects, which surprised me as cimzia worked much quicker for me. It was worth it for me, I have fewer flares, normal CRP/ESR and joint damage has stopped progressing. It's not perfect, my RA is not in remission but it's certainly better than it was.

    It's so hard because we are all different but I really hope it works for you. Best of luck!

  • Hi Crasdoll,

    Thanks for your reply, it allways helps when positive storingsdiensten comes around!

    Have a Nice weekend!

    XxxBas

  • I have been on Humira for 3 years with no side effects. I have had only one flare up and I feel that I am lucky. Good luck.

  • Hi Bissie,

    Thanks for your positive reply, have a Nice weekend!

    XxxBas

  • Yes I have tried Humira but not helped as have none of the biologics.Doctor always says this is the one but it never is.

    Hope it is the magic one for you

  • Hi Fra,

    It is a pity it doesn't work for you! I wish you all the best!

    XxxBas

  • I have also used Humira and it worked very well for me, for a long time. However when I started getting arthritis flares, many years later I looked into changing my diet and going to see an alternative therapist.

    I have also had allergy testing done.

    hope things work out for you.

  • Hi Kalel,

    Diets are important inderdaad, we try to eat as much as possible bio food. Avoid E Numbers, make the most food by ourselves. But still I suffer a flare up.mwhich Diets donjon use? And are you still on another biological?

    Have a Nice weekend!

    XxxxBas

  • Hey I'm currently eating a raw food plant based (vegan diet) it has really helped restore my health and help me reduce a lot of the meds that I'm on.

    I was seeing an alternative therapist but they have let me down. I'm now trying to see if I can find someone else that can help me.

    I have been told that the best way to remove a lot of the inflammation in our body is buy eating foods that are not acidic. For example i have been told not to eat meat, white potatoes, rice and to stay away from gluten etc.

    If you can check out the paddison program for rheumatoid arthritis on facebook .

    There are also lots of people on Facebook and you tube that talk about healing the body.

    Most of the people that I have spoken to tell you to do things like heal your gut, remove any toxic products from your home, start dry brushing, use castor oils packs etc

    Hope that everything that I am talking about on here does not sound to extreme.

    I do know that if you have been on long term medication it is bit more difficult to try and heal the body (so to speak)

    However I can not tell you how much changing my diet etc has really changed my life. Of course everyone is different.

  • You might want to take a look at this website nutritionfacts.org/

  • Thanks a lot Kafel! I am certaintly going to try it, we stopped eating gluten long time ago, eat more fish than meat, and will stop the meat immediately. Going to visit nutricionfacts!

    Bas

  • If you can please watch this video

    It's very interesting and basically talks about how we are all different but how grains etc can affect some of us with autoimmune probs.

    Also if you can check out the Paddingson programme for ra the guy who runs it has done a lot of podcasts etc and spoken to people who have healed themselves of raw.

    I'm not a fan of fish cause of the mecury in it but I do take a dha supplement.

    I know a lot of people say keep a food journal and see how you feel after eating certain foods.

    I have also been told that if I was going to start a vegan diet and was not prepared to take supplements then you should eat one egg a day but make sure you buy the eggs from an organic farm.

    If you do change your diet then be patient with yourself it has taken me a long time before I started to feel better

    Another thing that I've been told to do is look at your home life, how stressed do you get etc. how we feel emotionally can also affect our health.

    The first thing that I would do if where you is heal your gut. I know a lot of people that do cleanses and I also know people that have done at home enemas. However I would do a bit research before doing anything. I know some people have had side effects from doing colonics. However I do think that doing at home natural cleanses can really help heal the gut etc.

    If you can check out someone called Dara Dubinet and Dr McDoughall on you tube.

    You should also read this kriscarr.com/blog-video/how...

  • I have been on humira for over 15 years. apart from last two years, it has been the best thing it happened to me . I did not feel that even i was ill, to the extend that i started to reduce my medication. since last year it has not been working so well and i have been told they may put me on ritaximab or toci. good lock and i hope it works for you.

  • Thanks Bijan, it gives me new hope!

    Have a Nice weekend.

    Bas

  • Hi Bas,

    I have had 4 infusions of Tocilzumab, the 3rd infusion I had a terrible throbbing pain up my spine, the nurse said I must have twisted my back or pulled a muscle, I really didn't think so. My blood pressure went above 220 and my blood sugar went down to 2.1 and I felt really dizzy as if I would pass out. The nurse called a doctor to check on me and stopped the infusion until I felt better and then they tried starting it again, I was fine then and had the complete infusion. The 4th infusion I felt the pain starting again almost right away and asked the nurse to stop the infusion, after a little while I said she could start it again and I had, had something to eat, evrything was fine. I am now in Canada and it will be awhile before I can have another infusion, but I am concerned about what happened on the last 2 infusions.

    Hurmira, I had over a year ago, I had to stop as it effected my breathing after the 2nd injection, I then started on Enbrel which worked fine until I had to stop twice due to other medical issues.

    I know we all react differently to all the medications, I had brilliant results at first with Tocilzumab infusions but due to staffing issues at the hospital I had to wait several months before I could have the 3rd infusion.

    This is just how things are for me.

    I hope this helps you.

    Take care, Susan

  • Hi Susan, I hope you have a great time in Canada!

    Sometimes I think all the biologicals cause more problems and side effects .

    Currently I am on sulfasalasine , hydro, prednisolon and mtx injections. It improved, and my CRP was lower than 5, it unfortunately the improvement lasten only some weeks. A lot af pain again, on the 17 th of februari I will get a wrist replacement . it was planned in oktober 2015' but I got shingles. Tomorrow I will see my Rheumy and we could delay the Humira but I am afraid I have to start now !

    Wish you all the best!

    XXX Bas

  • Hi Bas,

    I wish you all the best for your wrist replacement on February 17th, I will keep my fingers crossed that it will be successfull and you will find great relief afterwards.

    I started off ok on the toci infusion and then I had the terrible pain up my spine on the 3rd infusion and it started again on the 4th infusion, not as bad but I had the nurse stop the infusion as soon as I started to feel the throbing pain again up my spine as before. She did restart the infusion and everything was fine. I am going to wait a couple of months to see if I can manage on my other meds, but I do need to start reducing the prednisolone 20mg as this is causing me to have steroid induced diabetes which isn't good and I was also told that once I have stopped taking the steroids the diabetes to stop too.

    Good luck with your operation and take care, keep in touch and let everyone know how the operation goes.

    Sue xxx

You may also like...