Advice welcomed

[Bummed24]

I need your wise advice if you don't mind. Last month I travelled to the Mayo Clinic for advice on how to proceed with my PMR, and presumed GCA. My blood work and scans and MRI's showed no inflammation, so I was advised to rapidly taper the Prednisone which was at 30mg and continue the weekly Actemra. At ten mg, my headaches returned consistently, my tinnitus escalated to a higher pitch, and my scalp is tender again. My jaw is slightly fatigued.

I'm addition, I have experienced four episodes of spikes of severe hypertension over the past few months. The first time was seven hours after an Actemra injection. The other three episodes were more random. All occuring out of the blue on uneventful days. Do you think the Actemra might be the culprit?

Of note, I was on Actemra about eight months before I noticed a break in the headaches. Which makes me wonder if it was tincture of time that began breaking up the headaches, or the Actemra that made the difference.

I was beginning to feel hopeful last month that I was making progress, and I was beginning to enjoy the lesser side effects of the lowered dose of Prednisone. It's hard to keep up my spirits with so many unknowns.

[DorsetLady PMRGCAuk volunteer]

Even with Actemra in the mix a reduction of Pred from 30mg to 10mg in a month is too quick in my view. Probably need to go back up -to 20mg maybe. But you do need to advise doctors

Actemra also makes the testing of bloods almost meaningless -PMRpro can explain reasons why better than me.

No advice on vagaries of Actemra -sorry, but others will .

[PMRpro Ambassador]

If you are on Actemra. then the usual inflammation markers of ESR and CRP are meaningless - because of the way Actemra works - and it does rather concern me if the Mayo is unaware of that fact.

The scans and MRIs are potentially more informative - but at the time you were on pred and Actemra - I'm not sure anyone could expect anything to show up. You MIGHT see something now you have symptoms.

Increased BP is a very common adverse effect with Actemra - I'm on medication for hypertension anyway so probably wouldn't notice.

Only half of patients on Actemra are able to get off pred entirely. This is because there are at least 3 different mechanisms that create inflammation in GCA, Actemra only works on one of them - if your GCA involves the others, you will need pred to manage the inflammation due to them. In the clinical trials, 8-10mg pred seemed a common sticking point, Again - people at the Mayo should know that.

[Bummed24 in reply to PMRpro]

Thanks for your thoughts and solid information. I am developing quite a fondness for all of you on the other side of the pond. And we probably share similarities in our genetic codes! 😀 So maybe ask my rheumatologist to consider dropping the Actemra? I withheld the Actemra for two weeks after getting my Covid vaccine, and didn't notice a difference at all.

If I increase my Pred to twenty, would you suggest tapering 2.5 or 5 mg at a time ? ( after I stabilize). And will allow three to four weeks between tapering this time.

Yes, that was my concern too, ...that maybe the Pred was masking the inflammation, and so that's why my imaging at the Mayo appeared normal.

[PMRpro Ambassador in reply to Bummed24]

Just because half of patients don't get off pred altogether doesn't mean it isn't doing something and if you stop it, the ongoing underlying autoimmune disorder will still be creating the IL-6 cytokine that is the target of Actemra. You may find you need a LOT more pred. Not saying you will - but it is possible. You may jump out of the frying pan into the fire!

I would increase the pred until you have no symptoms and then taper maybe 2,5 at a time to 15mg but from there 1mg at a time. Being on weekly Actemra and 11mg pred at this stage is OK. I now use Actemra once every 2 weeks - you could try that since you say you stopped the Actemra for 2 weeks without a problem. You are looking for the minimum dose of both until the underlying cause of the problem burns out and isn't creating inflammation. You may be able to space the injections further apart, in a few months you may be able to reduce the pred further. This a long game - no instant answers because there isn't a cure. It is a management strategy, whatever medications you are using.

[Bummed24]

Oops...I m on Actemra, not Kevzara.

[PMRpro Ambassador in reply to Bummed24]

My mistake, sorry - wasn't concentrating and I'll change it! But it would make no difference, they work on the same thing, IL-6, just in a slightly different way. The markers aren't valid and it is only one of at least 3 ways of making inflammation - like switching off the main light in the room but all the side lights are on so it is still light.

[Bummed24]

No worries. Darn those side lights!Thanks for explaining. I had been down to ten mg, and increased to 15 for a week. Today I upped the Pred to 20 as my symptoms unfortunately continue.

What concerns me also is that my BP which runs normally has spiked to 220/120 on four occasions recently. I now have Clonidine which has worked to bring it down, but the high numbers make me feel very uneasy. My BP is normally fine, except for these sporadic episodes. Taking Lisinopril regularly lowers my BP too much. Does Actemra or Pred cause episodic hypertension, or just a gradual elevation ? If so, maybe consider dropping Actemra to every other week?

So many questions. So grateful for all your wisdom and intellect.

[PMRpro Ambassador in reply to Bummed24]

There were examples of raised BP a short time after administration of the Actemra I think - but high BP is one of the first in the lists of adverse effects. Doesn't seem to mention sporadic spikes like that. As my rheumy says, the less you can manage on, the fewer the adverse effects are likely to be. I notice at 14 day intervals I am starting to stiffen a bit as the next is due so he suggested 12 day intervals. I think the stiffness could be more due to trochanteric bursitis so I will see how the steroid injections yesterday turn out. I'm certainly walking better today. I extended the intervals slowly, added a couple of days at a time.

[4Immune]

I too was on Actemrà but I feel bad for you with the hypertension, I never had that I did have symptoms of fatty liver. I am currently off Actemra. Lately my problems are coming from PMR. You seemed to be pretty knowledgeable about how you are managing, I hope all goes well for in the future and you have the ability to get off both

[Bummed24 in reply to 4Immune]

Thank you for your care. I think I may try upping my antihypertensives on a regular basis, and see if that helps. I am sorry to hear you developed symptoms of a fatty liver. I hope they improve now that you are off the Actemra. So far my higher doses of Pred are keeping the PMR at bay, but I suspect I may have to deal with that as I reach lower doses. I wish you a complete recovery! It's such a journey, isn't it?