Stopping Actemra/Tocilizumab

[Bachblues]

I’m currently self-injecting Tocilizumab once a week and taking 4mgm Prednisolone daily. My prescription runs out in October. No idea what happens then so would appreciate knowing if anyone has had this type of experience? Does one need to increase the Prednisolone? Rheumy suggested reducing injections to once every 2weeks but what when and what then?! Many thanks.

[SheffieldJane]

I moved to 2 weekly injections and then just stopped. No need to taper, no ill effects. How has it been for you? I did about a year of Tocilizumab/ro-Actemra. I had interruptions before for illness, UTIs and anti-biotics.

[Bachblues in reply to SheffieldJane]

Encouraging - thanks. Did you then gradually taper the Pred?

[SheffieldJane in reply to Bachblues]

That was the plan. Getting down from 7mgs has been hard. It has taken me 4 months to get to 5.5mgs. Can’t decide if my symptoms are mainly side effects from Pred. Fatigue remains my main symptom.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Fatigue-would plump for adrenals being the culprit…

[SheffieldJane in reply to DorsetLady]

The Endocrinologist wants to see me when I get to 5 mgs. Personally, I think I would fail a Synacthen Test at that high a dose.

[piglette in reply to SheffieldJane]

The deathly fatigue!!

[Bachblues in reply to SheffieldJane]

Thought I’d try reducing Pred before doing Toc every 2 weeks. Await Rheumy comments!!! Last time I did 3.5 Pred it was ok till I got Covid and that provoked a flare.

[SheffieldJane in reply to Bachblues]

I can understand your caution after the Covid provoked flare. I didn’t notice any clear difference when I began fortnightly Tocilizumab. We all respond differently. As far as I know, I have never had Covid, I have had several home tests and don’t mix much - mystery though.

[Bachblues in reply to SheffieldJane]

Hope it stays like that!!!!

[HappyDiamonds]

Im interested in this too as I am on 4.5mg (at least I was until today) and my year of TCZ is up in December. I have no idea what happens then as I won't be off Pred by then. You may be interested to know that I had to have a pause in injections, missed 3, to allow an infection to heal for an Eye Op and today I have had a flare. Able to resume injection yesterday and upped Pred today by adding 5mg to my 4.5mg, keeping fingers crossed.

[Chrisellie in reply to HappyDiamonds]

My journey and reduction program, getting off pred and Tocilizumab injections, is in my longish profile . The injections just stopped at 12 months and I have been off everything for almost 2.5 yrs. not everyone is the same so best of luck.

[Bachblues in reply to Chrisellie]

What a journey but glad you made it. Encouraged by this. Thanks.

[HappyDiamonds in reply to Chrisellie]

Thank you Chisellie for sharing your journey. Would you mind if I just query with you please whether you contribute your on and off mobility problems with TCZ injections? The reason I ask is because I have had problems for a while although I did have spinal fractures but they have healed and I am still not as mobile as I would like. The strange thing is when I stopped my injections for my recent operation my mobility improved. I mentioned it to my Rheumy when I asked her if it was ok to resume injections this week and she said there was only one way to find out if the TCZ was contributing to aching legs etc. I also have muscle wastage from Pred and doing exercises from Physio and walking on my treadmill. I took my injection Friday and today (Sunday) I am struggling to walk again. I have never seen any posts from anyone else about this and TCZ.

[Chrisellie in reply to HappyDiamonds]

I had a tightness in my thighs pre diagnosis. I couldn’t stand anything constrictive .I had breathing issues and a burning feeling in my chest, possibly aorta related. Some dizziness but these all reduced over time and now fully gone. Tocilizumab stays in your system for up to 3 months, so not sure if that could be the cause.

It may be a combination of things causing this. Is it weekly injections you are on?

[HappyDiamonds in reply to Chrisellie]

Yes I’m on weekly injections but I believe you still only get a years supply whether you use 52 weekly or 26 every other week. I don’t want to stop it as its enabled me to taper, previously I couldn’t get below 10mg Pred. So pleased it was a great help to you.

[Jim-CJ]

Hi BachbluesMy wife dropped to every other week with no effects. She is at 3 1/2 prednisone with GCA.

Should be no problem, but your body will tell you.

Take Care,

Jim & CJ

[Chrisellie]

Thank you, I was very lucky.I haven’t heard of an “immune memory” before.

.

[Chrisellie]

It is strange how some bodies react different .Interesting though.

[Sharitone]

I'm surprised your rheumy hasn't given you more directions. I suppose that you could leave it longer between doses, and extend the time that way.🤔

[Bachblues]

Fascinating but ultimately depressing....