Good morning everyone, I’m just checking back in for a bit more advice. After 5 injections of Actemra I had my Rheumatologist appt yesterday to discuss bloods and the move forward. Miracle of miracles, my CRP is 1!!!! and my ESR is 2, this after recent levels of 110 and 57 respectively. I am feeling well (apart from an injured shoulder which she offered to inject with cortisone), and now, after following the DSNS taper to 9mgs, she wants me to go to 8 for 1 week, dropping 1mg each week until 5mgs, and then 1mg every 4 weeks. My history tells me that this is way too fast, and when I told her that she replied that actually this is slow. Everything I have learned on here has guided me towards very slow tapering ... hence I am scared. Thoughts please?
Worried about a hastened taper ...: Good morning... - PMRGCAuk
Worried about a hastened taper ...
I think to most of us is also sounds very fast, but having no experience of Actemra I’m not sure how quickly the Pred can be reduced.
Hopefully someone with experience can answer that, but you’ll probably need to wait until North America wakes up, they use it more there than in UK.
I suppose you could try her suggestion for 2 weeks and see how it goes, then maybe stay at 7mg for an extra week. If ok, then carry on, if not then contact her.
You may find it’s fine, but unfortunately you won’t know until you try.
Thanks DorsetLady, you are right. I’m going to try 8.5mgs for a couple of days and then go on to the 8mgs. I’ll definitely stay there for at least two weeks, otherwise I might move on and if I have a flare I’ll be lost. She seems keen to get me below 7, after that she pretty much said to do as I please, which I will, with the encouragement of this group.
As she's indicated that she wants you at 7mg then maybe try 0.5mg a week until you get there - and then go to 1mg per month as Rugger has suggested.
But you do need to be aware of any adrenal issues - so just keep notes of how you feel as you go along.....
and of course, come back to us at any time - good luck.
OK thanks, that’s a good plan. Strangely, even that sounds fast to me now, having gone so slowly and cautiously since that horrible flare back in January. But I should be thrilled and I am and I will give it a go!! 
I can only echo what Dorset Lady has said. Actemra, whilst new for use in GCA. Was originally used for Arthritis and then trials where held.
The USA, FDA licensed it pretty quickly. The UK was a bit more cautious, it is also very expensive ( around £19,000 to £20,000 per patient per year. It is only used, so far, in the UK in complicated cases.
This means for people like me, who have had GCA and are in remission, are really unable to help with tapering etc and we do not have a lot of people in the UK on it yet, perhaps when the price comes down - who knows.
The side effects are listed, but most of them were found when it was used in the treatment of Arthritis. I am only hoping that people with GCA and being treated with Actemra are aware of the Yellow Card scheme in the UK.
Once a new drug comes into use, more is found out about how it works etc.
I do know one person who took part in the trials and she walked through GCA in two years and is still in remission. The Clinical trials are run safely but are limited in numbers and during the trial, she had 24 hour access to medics every day the trial was going on. It worked for her, but she is the only patient I knew as she was a member of our support group. The only people who could take part in the trial, where those who had just been diagnosed with GCA.
Please remember I am not a medical person at all - just someone who was around at the time and on a learning curve which was steep.
I think you have to trust the Rheumatologist but only if you have confidence in her. If you did not talk to her about your concerns, how about trying a phone call?
BTW, before you were put on Actemra, did anyone explain anything about it? Just curious.
Thanks jinasc. I do have confidence in my Rheumatologist, she is my second and the only to be concerned about my inflated inflammation which she investigated through a PET. It has been explained to me that you need a biopsy to be certain, but she was convinced that I have GCA and, while she usually prescribes Actemra for her RA patients, she is having good results with people like me. I was nervous and told her and she reassured me about the side-effects, mostly liver which is checked 4 weekly, but she said that the pred was far more fraught with side-effects. She said that she will need to monitor my pain closely because the reduced PMR and ESR does not mean that I will sail through, but it’s a good start. She did explain how it works, which I’m sure you know, and I had to have numerous test and then an application for approval from our Health Department, because of the cost. You need to have tried and failed with another biogenic and other conditions, but my doctor completed the paperwork ticking the “right” boxes for approval. I guess my concern will be what happens when I stop taking it ... will everything just go back to the way it was? Time will tell and I will just hope like hell that things go OK.
My main concern though, was the speed of the taper. I’ll follow DorsetLady’s advice and take it a bit slower than doc advised.
Good decision and it is yours.
Your Rheumy sounds brilliant.........it is also lovely to hear she was completely au fait with Actemra, that is a bonus - a big bonus. Hang on to her like glue.
Hope everything is going OK in Oz and you are safe.
We’re doing well down here so far. We are all thinking of our friends and family in the UK, and hoping for a speedy way through this devil of a virus. Thanks for your words about my Rheumy, it’s reassuring that you think so, but even though I trust her, I trust the opinions and knowledge on here more!
No idea on the GCA front but I’d want to know how the adrenal function will keep in step with such a fast reduction.
Good point SnazzyD. She’s keen for me to get to 7 and seems OK with me taking it from there. Do you think I’ll be OK getting to 7 with regard to adrenals?
We’re all different to suck it and see as they say. Just keep an eye out for your level. For me, 7mg was the worst dose for feeling like I had nothing in the tank. It appeared to be too high for my adrenals to wake up but too low for my body’s needs. On a hunch I went on down at a rate of 0.5mg per 6-8 weeks and it started to get better so by 5mg the clouds started to lift. Once at 3mg I reduced at 0.5mg per 10-14 weeks and by this time I was soo much better. My symptoms were feeling empty, emotionally unstable (especially in the late afternoons), fluey feeling, nausea, upset gut, jitters, a flare up of my fibromyalgia, occasionally kidney pain, feeling a night’s sleep wasn’t enough. If I had a shock the effect lasted for hours and even sitting in a car for a few hours was too much. Oh, and I noticed creases in my skin were a bit yellowy eg in my palms and sides of torso plus my hair started to fall out. A bit of a horrible list, hopefully not to be yours, but plenty there to be aware of just in case. Remember our adrenals wake up at different rates so you may be fine,
Oh golly, you poor thing! That sounds absolutely horrible but your plan obviously worked and thank you for sharing it with me because I will draw on it if necessary. You provide hope and that it something we all need. Onwards I guess, and we will see what happens. I am reassured by this group, very fortunate indeed.
I have been on Tocilizumab for 12 weeks and my Rheumatologist advised a reduction in pred of 1mg every 28 days. I started at 9mg and am now on 6mg. I haven't noticed any ill effects of this reduction rate, as I'm assuming the TCZ has brought the inflammation under control. I am feeling better than I have done in the past 4 years!
Your blood results are a good sign.
As jinasc suggests, you should discuss your concern with your Rheumatologist - alternatively, do what she has advised and see what happens! My feeling is that the TCZ changes everything, so we shouldn't assume that we will react in the same way to a pred taper that would previously have been too fast.
Good luck! 🌻
Hi Rugger, great to hear from you. Your taper plan sounds more sensible I must say, but I think I will go half way, and try the first two tapers after two weeks, making them 0.5mgs rather than 1mg, which equates to what you are doing anyway. I’m just behind you on the journey, as you know, and I was completely gobsmacked to discover my blood results! Just nervous about a speedy taper but comments here are reassuring, as always.
So happy you are doing well. Hope Actemra continues to work for you. Need to mostly evaluate your progress by symptoms. While on Actemra ESR& CRP are not accurate reflection of inflammation. See 12.2 section of patient info. That's not to say it's not working for you, but blood labs are more questionable .
OK, thanks Spanky2019. I suspected this as I am not completely pain free, yet my blood results suggest that I should be. I will review the patient info. Much appreciated.
Your CRP is low because you are on Actemra/tocilizumab - it is meaningless in assessing if the GCA/PMR is still active. Rather a waste of money. Think the same applies to ESR. Symptoms are the primary assessment of success of Actemra therapy.
She is giving you a fairly normal taper for patients on long term pred to allow adrenal function to return. The speed of the taper is OK because you are on Actemra - that is the whole point of Actemra, it allows patients to get off pred much more quickly, and I think that is a slower taper than was used in the clinical trials. HOWEVER, only half of patients are able to dispense with pred altogether and the rest need to remain on a low dose of pred despite the Actemra. So if you DO get symptoms resurfacing don't accept her telling you that it is impossible - tell her to check the study documentation although from your other comment it does sound as if she is aware of that and it is possible that it is a bit different if you only have PMR.
What she may not be aware of though is emerging evidence that poor return of adrenal function post long term therapy on pred is far more common than they thought previously. It does relate a bit to how long you have been on pred - the study subjects were all newly diagnosed with GCA and tapered their pred quite quickly from day 1 because they were also started on Actemra within a very short time. You have been on pred much longer - though at 18 months they wouldn't expect too many problems.
Thank you PMRpro. I am listening to the responses here and feel a little more encouraged about the hastened taper prescribed by my Rheumatologist. Having said that, I have had two significant setbacks over my relatively short journey and accordingly, I plan to slow it a little more than doc has prescribed. The thing I don’t understand is why Actemra would enable a low dose of pred once patients, me!, stop taking it. If the disease is still active, how does that work? I want to just enjoy the moment, but I do think about what happens once I am off Actemra. You are a cautious, stern and wise support on this site, and I really appreciate that.
It is supposed to take the autoimmune part into remission - but it only works on one of the pathways that makes inflammatory substances, the IL-6 one. In GCA there are 2 other inflammatory pathways that can be involved and biologics are so targeted that they are not affected - it isn't that the Actemra isn't working fully on the one it goes for. I don't know if they are active in PMR though.
It does actually induce remission - the only question is how long it lasts. They must be up to a couple of years now in post-trial monitoring.
One more question ... does Actemra assist with adrenal function? I am wondering if I read you correctly.
No, has no effect on adrenal function at all. While you are at above about 7mg the body shouldn't need to make more corticosteroid as there is enough present for it to function. Then, as you get to lower doses of pred, the feedback system that triggers the adrenal glands to produce cortisol starts to function again. A really low level of cortisol in the body at midnight tells the HPA axis (hypothalamus, pituitary, adrenal glands and a set of hormones) to start working again. That is the only thing that pokes the system into life - a low level of corticosteroid at a specific time. It doesn't happen overnight - and that is why you slow down below 5-7mg.
Yes, thanks. Makes sense to me. Much appreciated. You are so generous with your knowledge ... need to start charging like the docs in Australia!
This also seems to support the idea of taking pred at 2am.
Certainly allows the maximum time for the level to fall!
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