HI, I have PMR/GCA and have been tapering slowly, helped by Actemra. I got to 2mg of Pred and was fine. I didn't use the Actemra on 4th Feb as I had my 4th Covid vaccination that day (I've had experience of my neutrophils dipping dramatically after vaccinations and Actemra might make the recovery slower). A week later I took the Actemra again and reduced pred to 1.5mg, on 10th Feb. Since then I've struggled with flare symptoms. I've read lots of advice about handling flares on HU and thought I could handle it, but am feeling a bit low and uncertain what to do next.
I left it a week thinking it would settle on its own, then increased to 2.5mg on 18th and to 5mg on the following 2 days. For the last week I've been on 6mg and while the symptoms have eased, I still don't feel back to normal.
The symptoms are all PMR related not GCA. Ache and stiffness in hips, thighs and lower back plus some fatigue. I'm keen to reduce the pred as much as I can while I still have the Actemra - heaven knows what's going to happen when it's no longer available. Dr. Mackie has mentioned Leflunomide, but people on HU have reported unpleasant side effects, so I'm not sure about that - yet.
Sorry about this long ramble, but I wanted to put in all the facts. Thanks for reading!
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Only half of GCA patients were able to get off pred entirely with Actemra/tocilizumab but there are no figures for PMR. With GCA it is known that there are at least 3 different mechanisms underlying the inflammatory process - if the two that aren't IL-6 based are involved in your inflammation, TCZ won't work for them, you will still need some pred to deal with that inflammation.
I assume that you reduced pretty quickly towards the end - you might have missed where the pred was now not quite enough. And there is always adrenal insufficiency to consider - it can have symptoms that are quite similar to PMR.
Thanks for the speedy response. I've seen mention of adrenal insufficiancy but don't understand how this affects things. Can you explain please? Also, do you think I should continue at 6mg a bit longer, or increase the dose?
When you are above about 7mg of pred, the body doesn't need any more corticosteroid for day to day functioning, just in a stress situation. The signalling process isn't stimulated and eventually it is a use it or lose situation, the adrenal glands go into hibernation. Then as the oral pred goes back down, they must wake up again - a very low level of pred in the body at midnight prods the entire feedback set-up into life. But it isn't immediate - it takes months sometimes and if you reduce quickly - as you can with TCZ - it doesn't always keep up.
Either way, whether you may be having a flare of the PMR symptoms or the aches are due to low adrenal function, adding more pred will make it improve. But if you want the adrenal function to perk up, you MAY have to put up with the discomfort of a lower dose of pred. I think the most reasonable assessment is that poor adrenal function would stay fairly stable, a flare would get worse over time - it is about the only way to tell.
If it were me I'd try to stick it out at 6mg and not go any higher if things are improving. But that DOES suggest that the TCZ isn't 100% dealing with the inflammation - and you are likely to need some pred ongoing.
I'd almost got my head around discussing trying leflunomide with my rheumy until I tried taking a statin after being a bit browbeaten in a cardio appintment - total flare has really put me off messing about with medications I know work!
The other cardio (the usual one) and I have discussed it previously and she was the one who marked the notes as not to be used. This newer one still believes the statins rule the world story! She just wouldn't give up. I shall take more care not to see her again - nice though she is. I was only there because one of her non-cardio colleagues had decided I should stop my other medication and that was on my notes. I had just looked at her as she let me go home from the ward (only been there a few hours, couldn't wait to get out, it was a weekend so couldn't demand to see the cardio I usually see) and she did say "you can carry on taking them if you think so"! I did, and did, and the GP provides the prescriptions so it wasn't a problem but I wanted it sorted in case I ended up there again.
Wouldn't it! But this was a drug that for nearly 7 years has done an excellent job on my paroxsysmal a/f. It was a few days before my husband died and we'd had the weekend from hell - I woke up with a heart rate of 190-ish! The emergency doctor and paramedics were terrific, so were A&E but the duty ward doc was my nemesis - had already been a sod over OH! Arrogance doesn't come into it and she doesn't communicate with mere patients and their family. SHE didn't think that the reason I was in the state I was was stress and exhaustion! Everybody else did/does.I spoke to the GP about it, I will make my feelings known if she is allocated to me again.
Arrogance should be a No-no for admission to medical school. I just had a phone appt with a respiratory registrar who spoke so normally and helpfully to me, it was a real breath of fresh air!
Interesting discussion. I too have paroxysmal afib. Last October I had a cardiac ablation, but I am still having episodes of AFib. What medication are you taking to control your AFib? I do a pill in a pocket and take 650mg of propafanone and wait it out. I usually convert in 4 to 6 hours. Do you think your AFib is associated with your PMR/GCA?
The cardiologist who did the difficult part of the diagnosis does - thinks it is due to the autoimmune part of the PMR having damaged the sinus node, the electrical cells that trigger the heart to beat. My episodes are about 1 to 2 hours and not too bad, more just a tachycardia, and come in spurts, a few days at similar times and then disappear again. I take propafenone every day, 1-1/2-1 300mg tablet morning afternoon and at night and it keeps the a/fib to less than 4% overall, I also take bisoprolol to slow the heart rate - and the pacemaker makes sure it sticks high enough, My pulse is usually 60 with very very occasional brief bradycardias down to 45-50. 4-6 hour a/fib episodes would drive me up the wall and would have been absolutely hopeless while OH was ill as I had to be able to function. Less of a problem for me on my own I suppose.
Thank you. Lots of information there! I'll continue on 6mg and see how I feel. I've been doing a very gradual taper (last July I was on 7.5mg, reducing by 0.5 about every 2 or 3 weeks). I hope to be able to drop back to about 2.5mg and take it veeeery slowly down from there when I feel less achey.
I am also on Tocilizumab (until my allocation runs out!) and have been tapering the pred, but at 0.5mg every 28 days. I'm down to 1 / 0.5mg on the DSNS taper and am feeling tired and a little bit weak, but I'm sticking with it for now.
We maybe share the same Rheumatologist and Methotrexate is planned for me!
The gap between Actemra doses was exactly 2 weeks and the vaccination date was in the middle. I think, with hindsight, that I should have delayed reducing the pred by at least another week after taking the Actemra.
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