Tocicilizumab????

[28maggie11]

Had 15 th injection yesterday . Did think it was working as not on anything else but this last week had to increase painkillers as shoulders and neck really sore. Made an appointment with nurse for next week. Surely it should be working by now. No side effect and painless injection. So disappointed. Anyone offer hope?

[Biofreak]

Hi 28maggie. I was on Tocilizumab for 16 weeks and had really painful shoulders which radiated down my arms. It seemed to make all my muscles painful. My bloods were absolutely fine. In fact just looking at the blood results you would have thought I was in remission. How I felt was just the opposite. I was taken off it and the muscle pain went away. You can discuss it at your appointment but I was glad to come off it. I was disappointed too because it apparently works for many.

[28maggie11 in reply to Biofreak]

Thank you for that will keep it in mind. What are you on now

[Biofreak in reply to 28maggie11]

I have had 2 changes since Tocilizumab. After Tocilizumab I was put on Humira which worked well for about 12 months or more but then stopped working. I am on Abatacept now which, fingers crossed, is working well. Hope I haven't jinxed it 🤣

[Biofreak in reply to 28maggie11]

By the way I am also on sulpasalazine which I have been for many years.

[28maggie11 in reply to Biofreak]

Humira caused a terrible rash so will mention the other ty so much

[Biofreak in reply to 28maggie11]

No problem. Hope you get on well with whatever you are given Maggie.

[28maggie11 in reply to Biofreak]

Hi again RA nurse says not tocicilizumab causing pain in shoulders. She gave me a steroid jag. I am going to do my own experiment ie not take injection for a few weeks and see if shoulders improve. Thought I would give you an update

[Biofreak in reply to 28maggie11]

I think sometimes you are tempted to do this. If you have already had the steroid jab I would see if that works first and if it doesn't you could try it then. Sorry for the delay in replying. I haven't been online for a while. Sorry to hear you are still suffering.

[28maggie11 in reply to Biofreak]

Ty for reply had steroid jag a week ago. No relief. Hope you are ok regards Maggie

[Biofreak in reply to 28maggie11]

I know I had to take prednisolone for weeks when I was on Tocilizumab which helped with the pain but as soon as I stopped I was in agony again. That was when the rheumatologist decided to take me off it. You become desperate don't you when you are in pain constantly.

[Biofreak in reply to 28maggie11]

By the way Maggie, could you perhaps ask for an appointment with the rheumatologist as well as the nurse?.Maybe the rheumatologist will have a different view than the nurse

[28maggie11 in reply to Biofreak]

We have a new rheumatologist I have seen her twice and was not impressed. Last one was lovely. I think I shall do my own thing and if stopping injection makes shoulders better then I have evidence. Take care have the best Christmas possible

[Knit12]

Didn’t work for me either. I’m waiting to start my 5th biologic this year. Each time you think maybe this will be the one. Guess I was lucky that the sulphasalazine lasted 20 years. This last 2 has been difficult so I can sympathise. I am back with the steroids to help with stiffness

[28maggie11 in reply to Knit12]

Think that the road for me as well. I can't take dmards. Ty for reply

[Buckybri in reply to Knit12]

It’s mad how we are all different, sulphasalazine didn’t touch me and mtx did nothing either but then I was put in imraldi and three days later I could walk again . I just turned 50 and I hate the thought of getting up in the morning and feeling like I do and it’s started to get worse . What makes me laugh is u see adverts for creams and they say relieves arthritis, everyone thinks arthritis is arthritis but RA is far worse than arthritis if I know where I’m coming from , it’s not just the aches and pains it’s the depression behind it to the thought of waking up every day and feeling like we do . I talk to people where I work and they will say oh I have arthritis , but it’s maybe wear of a joint and I’m not saying that it’s not painful but the arthritis that most of us have on here is something a lot worse and it’s classed as the same .

[AngelWings]

Hi 28maggie. Just saw your post about Tocy. I’ve just taken my 21st injection. I’ve been having terrible pain in my shoulder and neck as well for ages, that wakes me up at night. My Rheumatologist sent me to have a scan with a physio. After the scan. He said the pain is emanating from my neck!! I’m not convinced. After seeing other posts it seems the Tocilizumab is probably having some sort of side effect. I’ve been on so many combinations over the years. All the drugs start out well and then stop working and each case is individual to you. So what works for one person may not work for another. Rituximab infusions worked best for me. My combination now is still Methotrexate injections, Hydroxychloroquine, Tocilizumab and I’m trying to get off the steroids. I wish you well and pain free 🤗 xx

[28maggie11 in reply to AngelWings]

Read the answers to my post Biofreak says also had pains in shoulders. Seems to be a side effect. I struggle getting dressed as shoulders so sore

[Silverpixie]

I started tocilizumab in August 2017 and it didn't work until December 2017, it was my 5th biologic but has been life changing. No side effects. I'm also on leflumonide and azathrioprine. Liver didn't like methotrexate

[28maggie11 in reply to Silverpixie]

Cannot take any dmards but concerned shoulders becoming more sore. Had cut down on painkillers and was feeling excited but now back up again. Ty for reply