Hello, my husband had an appointment with the Rheumatology nurse today. He is on tocilizumab but has had to have half dose as his liver blood results are too high. It is not as effective and he is developing problems with his hands. He is seeing the physiotherapist and an steroid injection was discussed, but the nurse seemed unsure about it. Fortunately the Consultant was free and she spoke to him. He said about changing my husband over to adalimumab, which my husband was happy to do - not least as he won't have to to the hospital for infusions every four weeks. Apparently it targets a different part of the inflammatory process. He has had four bouts of cellulitis since being on tocilizumab which had hadn't had before. He then had a phone call while out picking up medication in the pharmacy to say the doctor had looked at his notes and won't be putting him on adalimumab as his antibodies were high. He didn't even know that these had been checked! He is to continue with a half dose of tocilizumab while they review his notes.
The nurse said he was complicated. He has been trying to say this to them for several months but no-one has been listening. He has diabetes, is on clopidegrol (to prevent blood clotting, has a heart stent, diabetes type 2 and chronic lymphatic leukaemia (watch and wait, meaning he is not on any treatment for it). He also has pulmonary fibrosis and emphysema. Needless to say he feels very down about it tonight. Has anyone had similar problems with tocilizumab and were they able to find another medication that worked?
Many thanks.
El
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strongmouse
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I was on adiludimab and it was very painful to take. There are other things to try so don't lose hope and they are at least looking at it but keep on at them too.I'm complicated too... mostly because nothing really works, it's not fun
Thanks wilbertjellyfish. I know it happens, especially as we get older, that first there is one thing and then another, and another! Thanks for the encouragement, but I agree it isn't fun. You'd think doctors might be curious to have someone out of the ordinary, but they seem to want to squeeze you into their particular box..
I’ve been on tocilizumab for 6 years. I only take a half dose (injection every two weeks instead of weekly). This is because otherwise it sends my neutrophils/white cell count too low. They’re still low but just in the acceptable side! For me the half dose seems to work ok.
I was on Tocilizumab for 10+ years. Worked really well then completely stopped working. I used to have weekly injections that I did myself at home. I was put on Adalimubab but it did not work. I am now on Rinvoq which does work.
I was on Tocilizumab infusions every 4 weeks and it worked really well but it hit my white blood cells and Rheumy didn't like that so was transferred to Cymzia which also works well and doesn't seem to affect anything else but I do not have multiple health problems.
I was at a Personalised Care conference today and there was a call to have more generalists and less experts. One example given was yes, get the oncologist to diagnose and do the acute treatment of cancer, but once that is over with then hand teh patient over to a generalist that can treat the whole patient.
I wish your husband could have that kind of care, but it will be a long time coming. The general agreement at the conference was that we need to change how doctors are trained and the generalists, including GPs, need to be seen as just as prestigious as the specialist consultants who are so narrow in their practice.
It is difficult and Personalised Care is the way to go. My mother saw a Gerontologist in her 70s and he was wonderful at being able to look after her needs wholistically.
The Rheumy Nurse Specialist he saw this week seemed to enjoy telling him that this bit of pain is from this and that bit of pain is from something else. At the end of the day he just wanted someone to tell him what needed doing. If she could have said well we can do this for that and that for the other, it would have been positive. Instead he was just left floundering. The physiotherapist has been brilliant at helping about his hand, but she can't prescribe medication ...
We need specialist but someone to take an over view. Some GPs are better at this than others, but there hands are often tied by budgetary constraints and processes!
I am sorry your husband and You are having to deal with so many different illnesses, it is very scary and getting even one under control can make a difference. I started Imraldi (an adalimumab bio similar) over 2 years ago and very quickly had an improvement in the dexterity of my hands and reduction in morning stiffness. The fortnightly injection is easy to do and although I was reluctant at first, I am glad I was persuaded to try it. Hope this is of some help, and things get better for you.
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