Hello. I started on TCZ last December, reducing pred from 15mg by 1mg per month. In February, the consultant told me to speed up the reduction - probably with good cause, because I have some significant side-effects - bones, stomach, insomnia - and to reduce by 1mg every 2 weeks in the hope that I will be off pred by the time I see him in August. I will then have been on pred for 2 1/2 years. I can hear your astonishment from here!
He also told me to tough it out a bit.
I did indeed get down to 5 mg. I have lots of aches and pains - mostly, I think, from causes like tendinopathy. Possibly, but possibly not, PMR. No headaches. But I have been extremely tired throughout. I expected this to improve when I got below 10mg, but it hardly did. I also expected it to get worse when I got to 7mg because of possible adrenal problems, but that hasn't happened either.
I am astonished at not getting better or worse and unsure how to proceed now.
Last week I reduced to 4.5mg instead of 4, and haven't the courage to go further yet. My gut feeling is that this enough for the moment, but that could just be in my head.
Please does anyone have a better gut feeling? Or experience of a rapid reduction on TCZ? Thank you!
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Sharitone
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My rheumy said to wait at least a month before even trying to reduce and then only 1mg at a time. He has been involved in clinical trials with it so very aware of its use and says it takes time to start working. And wonderful as TCZ may be in their eyes - it does NOT speed up the return of adrenal function, that takes time.
One of the possible side effects of TCZ is fatigue - and since 7mg there is the fatigue of adrenal function adding to the mix. I wouldn't worry too much about not feeling wonderful as you reduce the pred as long as you at least feel about the same at the very least.
Thank you. It's a relief that I don't actually feel worse, and I just hope it means the adrenals are keeping up. I have ordered a bracelet just in case!Have you felt any less tired since starting it?
I also started Actemra in December. I was on 35 mg prednisone at the time. I reduced 5 mg every week til 10. Then I lowered 2 1/2 til 5. I went slower at 5. I’m now at 1 mg. I don’t have any GCA symptoms but a lot of leg aches and pain. Don’t know if they are arthritis pain or withdrawal. I’m not tired at all. Mentally, I feel wonderful. I would really like to do a lot more physically but my legs hurt a lot. 2 extra strength Tylenol a day helps tremendously but I don’t want to take it every day. Everything I read says it’s safe but this might not make sense but because Actemra can cause liver problems, I don’t want to add to it with Tylenol. Like I said this is just my own feeling. Don’t know if Tylenol at those doses have any I’ll effect or not
Wow! Not feeling tired at all! that's roughly the same rate as reduction as me, so maybe I needn't worry so much about the adrenals. I hope your leg pain improves. at least if the Tylenol helps, I guess it's not likely to be PMR/GCA pain.
Hi Sharitone.In my profile around half way down is my pred reduction whilst on weekly Tocilizumab injections. Hope this helps. We are all different though.
I have had No relapse on any of the 3 illnesses . Tiredness does eventually go after being off pred. and Toc. It does reduce.
Thanks for the info. It's all very positive, and I see that you did go down a 1mg every 2 or 3 weeks, even on the lower doses. On the strength of your experience, I plucked up the courage to go down to 4mg today. Scary!
I started TCZ just before lockdown in 2020, so was 'fortunate' to have 2 years on it, instead of the one year allocation. I reduced the pred by 1mg a month, but the GCA-LVV flared when I got to 1mg, so back up to 5mg. I stayed at 5mg for several months and then reduced by 0.5mg/month, taking 10 months to get to zero pred at about the same time as the TCZ ration came to an end! So a very slow reduction, rather than a rapid one. My Rheumatologist has now started me on Methotrexate, as she feels I may flare again on no medication at all!
I do feel tired and have aches and pains, but I am 6 years older than when diagnosed and the years of pred may have taken their toll.
We are all different in how these conditions affect us and how we respond to treatment, but that is my story so far.
Thanks for answering, it's very interesting - as you say, everyone's body seems to react differently to everything. I just have to screw up my courage. I do hope you don't flare!Some lovely rugs on your site!
Thanks, that's helpful. It seems that you were ok going fairly rapidly down through the last few mgs, without any adrenal horrors, particularly the second time. that give me hope, though I wish I had your safety net at 3mg.Good that TCZ is still working for you. Do you expect to get it indefinitely?
Thanks for such a full reply. If fatigue was your main symptom, that is encouraging. I can live with some pain, but the fatigue is something else! I also have a friend with Addison's who was forever being rushed into A&E with her son shouting 'She needs steroids, quick!' That's because once, at the beginning of August, when the new staff begin, he heard the docs in the next room googling 'Addison's disease'!
I was prescribed tocilizumab in March of this year.The consultant letter requested a regime of a 2.5 mg drop every fortnight until we reached 10 mgs and thereafter 1 mg drop per month. I think 10 mg is a watershed moment in her eyes.
However ,my GP and myself, given my history were more cautious and have done a 2.5 drop every month. I am not sure how the consultant will take our response but we both felt that dropping from 17.5 to 10 mgs in 6 weeks as proposed was too precipitous. Hope our gut instinct was right.
No side effects but blood film is showing deformed blood cells which the pathologist attributes to the tocilizumab .
As the consultant giving the talk apparently stated this is not a benign drug but obviously useful in the management of this complex disease.
I hope this is of help and I wish you ever improving health
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