Tapering Pred on Actemra Feeling Bad @4Mg... Normal?

[PMRinsdca]

Hi,

I was wondering if anyone else has gotten on Actemra and tapering down off Pred? I had been diagnosed with PMR 4 yrs ago at 54 and more recently GCA.

Had trouble bumping down Pred w/out markers going up, got down to 2 mg. but had to bump back up, ending up at 15mg again. Started on Actemra in March 2018. Rheumy has me bumping down 1 mg every 3 weeks. Been going fine till last week getting down to 4 mg. (Also had a very busy week with visitors and numerous nights out.)

Started feeling tired and sore the day after bump down to 4. Thought it would pass but over a week later still feeling like I need a nap and can't concentrate. Muscles, hips, shoulder (1 side) are sore.

Is 4 mg a tough hurdle? Is anyone else on Actemra and tapering off Pred?

(I called my doc to ask for a blood test to check markers, I feel that bad.)

Thanks!

[DorsetLady PMRGCAuk volunteer]

Can’t help on the Actemra front sorry - only just approved in UK for GCA patients , so most of your answers will have to come from your side of the pond!

Would hazard a guess that maybe 4mg is your limit at the moment, despite the Actemra (which is only a steroid sparer not a controller of your inflammation caused by the underlying illnesses).

Your extra activity has probably been enough to tip you into needing a little more Pred, plus of course your adrenal glands may be a little slow in sparking back to sufficient production.

[PMRpro Ambassador]

Actemra is really only a very superior and expensive steroid sparer and while some people are able to stop pred altogether others only get to a much lower dose and have a flare if they take too little. That was found in the clinical trials and patients experience it too - but it appears some doctors haven't bothered to read the study literature and assume it means the patient will taper off pred to zero with no problem.

In addition, you yourself have been on pred for a long time and your adrenal glands will have "switched off". One of the parts of tapering pred is to get them to wake up and start producing the body's natural corticosteroid, cortisol, which will only start to happen after you have got to about 7mg and below. The longer the patient has been on pred the longer that process will take - it takes months not just weeks and it will become noticeable that you are low on corticosteroid once you get to about 4mg. At this stage you probably need to spend more than 3 weeks at the new dose - and for less discomfort reducing just 1/2mg at a time is better. The combination of the lack of cortisol and your rather energetic week was probably simply too much.

[Telian]

Hi

I can't help re Actemra but I do struggle getting lower than 4.5mg, just taken 4 months to reduce by .5mg. I am listening to my symptoms, they speak louder than blood results, as I am getting stiffness particularly in the neck and shoulders. I agree with PMRpro's explanation of a really slow reduction and is what I have to do. I'm hoping symptoms don't get worse, they do if I've overdone things and that's probably what's happened to you, or it will be stop the taper for even longer. Bit of trial and error at this stage. ATB.

[Vburris]

I have gca and currently tapered down to 9mg. I Just started on Actemra and have done 2 shots (weekly) so far. I’ve been napping a lot since starting it. I can’t tell if it’s the Actemra or being below 10mg, but there’s a definite increase in fatigue. Im incredibly lucky as I can mostly control my activities and environment to suit what I need just now. Not sure how I’d manage if I had a busy job and demands like so many other people have. Good luck everyone

[PMRinsdca]

Thank you all for your input! It was very helpful. I tend to get in denial about this disease and what it does to my body (not to mention the meds).

When I am feeling well, working out, walking, I push it all out of my mind. I don't want to be "sick" so sometimes I have trouble slowing down and listening to my body (I have always had trouble just relaxing). I live in Southern California where everyone is sooo active (hiking is the favorite pastime here)! Ugh.

I am constantly working on acceptance which is difficult when I expect to fly through this without bumps!

Thank you all for the support and reality check! Appreciate it.

[PMRpro Ambassador in reply to PMRinsdca]

Here where I live in northern Italy it isn't just hiking - they hike up mountains too and some run up them...

[PMRinsdca]

Yeah, same here. I am single and all of the guys want to hike a mountain for the first date! No can do! I have back issues too. (I look healthy and fairly athletic but not how I feel right now!)

I LOVE Italy and want to go back again! I was trying to go this fall but am concerned of travelling alone and then not feeling well. How long have you lived there? Are you from the UK? Can I ask what area or town?

Thanks!

[PMRpro Ambassador in reply to PMRinsdca]

Obviously I live in the mountains! Right up in the north in the German-speaking autonomous region South Tirol - the nearest big town is actually Innsbruck in Austria to which the region used to belong. We've had the flat 13 years or so - but have lived here for nearly 9 years and yes, originally from the UK.