Flare dosage after tapering to zero

[Optim11]

Hello everyone, hoping to tap your wisdom. I'm experiencing my first flare (aching neck, shoulders, temples; thankfullyno visual symptoms) since getting off pred in early March 2024. Rheumy on call wants me to take 40mg now as protection against vision loss. I was diagnosed with cranial GCA and PMR in July 2023, started w 1000mg pred iv x 5 days followed by 60mg oral and tapering to zero three months ago. I have been on Actemra since diagnosis. My question is, does 40mg seem like overkill here? Might it be reasonable to try maybe 15 mg and if needed, work upward? As many of you, I struggled w pred side effects and cringe at the prospect of scaling that mountain again. I also realize if I need it, I need it. I'm 60yo and still working full-time, keep active, and till now have had a relatively quiet ride. All thoughts welcomed and appreciated.

[DorsetLady PMRGCAuk volunteer]

Well if you have headaches, then the Rheumy is giving exactly the correct advice. You may not have sight issues [and if you did I would hope he would have suggested higher dose] - but 40mg is the usual starting dose for GCA.

Starting lower and building up rarely works… and having had GCA myself and lost sight I certainly wouldn’t want to be taking any risks . .. side effects or not.

Getting off all meds within 12 months is very quick… and what side effects bothered you most? We can make suggestions on reducing them…or mitigating them.

[Optim11 in reply to DorsetLady]

Thank you. I'm still on Actemra & plan is to continue weekly till I hit 2yrs then space injections to biweekly, monthly etc. Pre-diagnosis I had visual disturbances (episodic double vision and more) hence the 1000 mg "intergalactic bomb" pred doses up front, as my rheumy called them). Most troublesome side effects of the subsequent pred included a roaring feeling in my head/ears and insomnia. Caused osteoporosis, am taking vit d/k2. Weight gain too, have read thru the posts here and held it mostly at bay w low carb shift in diet.

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

Most troublesome side effects of the subsequent pred included a roaring feeling in my head/ears and insomnia. Caused osteoporosis, am taking vit d/k2. Weight gain too, have read thru the posts here and held it mostly at bay w low carb shift in diet.

Unfortunately most quite common, but all [apart from osteoporosis] reduce as you lower dose. Pity you didn't find us early days, we could have helped.

What are your bone density readings? You mention VitD and Vit K2 - what about calcium? and do they warrant a bisphosphonate?

[Optim11 in reply to DorsetLady]

I did find you early days and you all helped tremendously- just had no reason to post till now!! DEXA spine T -3.0, Z -1.5

Femoral neck T -2.0, Z -1.1

Specialist feels osteoporosis is secondary to pred and does not warrant prescription treatment at this time. Will repeat scan later this year. Apart from vit D/k I am careful to meet calcium target thru diet, and have added weight training to my exercise routine.

[DorsetLady PMRGCAuk volunteer in reply to Optim11]

Spine is in osteoporosis range-but femoral neck -osteopenia -so see what next scan says.

Glad we have helped 😊

[PMRpro Ambassador]

I take it you are still on the Actemra? How quickly did you taper the last 10mg?

Even Actemra is not a 100% answer to GCA, only half of patients are able to get off pred entirely, the other half need a low dose ongoing, 8-10mg is typical. This is because there are at least 2 other underlying causes of the inflammation and the Actemra has no effect on them at all.

The 40mg does feel rather OTT but he is going on safety-first, get the inflammation out quickly and worry about the pred dose afterwards. Working upwards in dose rarely works well, you are always playing catch-up. You will be able to drop back pretty quickly once the initial risk is dealt with.

[Optim11]

I appreciate your reply. Indeed almost exact words of the physician who was standing in for my own. I just didn't want to take a higher amount of pred unnecessarily. Your 'drop back quickly' thought makes me less reluctant and I see the upside is far greater than the downside! And yes I'm still on Actemra. Pred tapering plan from 10 mg to 0 mg was 1 mg biweekly, and from 5 to 0, 1 mg every three weeks. I realize Rhuemy's plan not necessarily my body's....had read through the info here and remained alert but did not have any trouble.

[PMRpro Ambassador in reply to Optim11]

It might be unnecessary - but the potential alternative doesn't bear thinking about does it?

[Optim11]

Point taken - and pred starting w breakfast. Thank you.

[Strelitzia]

Sorry for the delay in replying. I went on Actemra with 30 mg pred. Two years with Actemra, the last 3 months of those years on biweekly injections, my liver certainly has better numbers now I’m not on it, which is good, no other side effects that I know of. Have monthly blood work for the rheumy to be sure the GCA is not returning. Three and a half mgs of pred now, but the dr says that is for the pmr not the GCA. Always hopeful that there will be an end to this, and I hope the same for you!! (Have had pmr for three plus years, on a very slow reduction of pred ..quarter mg every 8 weeks.)