Pred , tocilizumab and methotrexate Anyone o... - Vasculitis UK

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Pred , tocilizumab and methotrexate Anyone on all 3 together??

Devoid
Devoid

Hi I have LVV , struggled to get inflammation down with pred , then methotrexate added , still no improvement.Tocilizumab added last November, first improvement seen after 3rd weekly injection. Wanting to know has anyone else been treated with all 3 together? I wanted to stop the methotrexate but consultant as advised to continue.Any thoughts?

5 Replies
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I do know of people on all three - that is because when you start tcz you continue with the pred until the tcz starts to work. I must say I don't see the logic of using mtx and tcz together if tcz is as good as it is said to be - and using both together certainly increases your risks of infection, particularly at this time. I would want some good justification for continuing the mtx - but it really didn't agee with me and even though I would have tried for longer had I not felt so ill, I wouldn't have continued it if it hadn't made a difference.

Devoid
Devoid
in reply to PMRpro

Thanks for that. I have never felt it had improved my situation and it’s only now I’m feeling somewhat better that I’ve looked back over my activity app and seen what a decline there has been since the methotrexate was added, I had contacted my consultant last week to ask his opinion and got a reply yesterday that he felt I should carry on with it but drop the dose to 10 mg . Has I had not heard anything and take it Wednesday I have actually not taken this weeks dose . I have also started taking the pred at night. Not sure what made the difference but I feel better than I have for a year, sleeping better and much clearer head in the day ( hadn’t realised it wasn’t so clear ) He felt it was necessary to keep the inflammation down but I can honestly say both physically and test results wise that was never reflected. Now the dilemma do I take 10 mg this coming week or instinctively I feel I shouldn’t

PMRpro
PMRpro
in reply to Devoid

mtx left me feeling dead - after 4 weeks I could barely put one foot in front of the other. I had told the rheumy I would be stopping it while travelling to S Korea - just as well, had I been like the previous week I'd not have got there, never mind attend the meeting! By the end of the week away I felt so much better I just didn't go back on it but it took about a month before I really recovered. The hair took longer - and all the folic acid tablets I had left!

Strange he won't trust the tcz with the pred - pred is the mainstay, tcz is just an amazing but expensive steroid sparer in GCA. mtx is just a stab in the dark if you ask me!

Devoid
Devoid
in reply to PMRpro

The difference in how I feel is unbelievable, my hair may take longer to recover, good job I started with a lot or I think I would have been bald by now, and the texture of it ,I could make pan scrubbers out of it !

PMRpro
PMRpro
in reply to Devoid

I had a panscrubber on my head with methyl prednisolone! mtx made it start to fall out in clumps within days! But apart from the nape hair being frizzy due to sweats mine is back to normal and growing! Not entirely a positive at present but hairdressers are back here - not that I have any desire to go yet...

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