My what a long journey!

[PMR2011]

Hello I’m back. After 10 years of PMR with GCA the last 4, I had done very well on Actemra. Was able to taper off Pred, then in Sept off Actemra. 4 glorious months off meds and it’s back! Classic PMR symptoms, along with niggles of GCA (hoarseness, ear aches) and elevated markers. Dang!

I am lucky enough to have started right back on Actemra however it seems not enough. Any thoughts on dose of Pred to supplement Actemra until it kicks in? Do you think this means I’m a “lifer” and will have to be on treatment indefinitely?

As ever thanks for your support, thoughts and wisdom!

[MrsNails]

So sorry to hear this - l don’t have any personal experience of Actemra or GCA but wanted to offer my best wishes. It’s 10.20pm here in the U.K. so it may be a while before you get replies. Best Wishes

NrsN

[PMR2011 in reply to MrsNails]

Thank you for the kind words from across the pond! Bonnie nuit.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear your news. Hopefully second time around it will be shorter and easier.

[fmkkm]

Well dang, that stinks!! Not to worry, low dose pred is ok too. I’m 6 years in now and thinking of starting the 3mg pred club. Say, how’s the snow storm with you? I’m in NC and we had an inch this morning but it looks like the north east is getting hammered.

[LemonZest11 in reply to fmkkm]

That's a club I'd like to join!

[PMR2011 in reply to fmkkm]

Thanks, sorry yours is lasting too. I think when I hit the 6 yr mark I was resigned to having PMR as a constant companion, then GCA came along and I had to reset my expectations again. We seem to have gotten 8 inches or so of snow. It has been so windy and the snow so light and blowing around hard to tell. Good news, we didn’t lose our electricity, tho we do have a generator. My youngest daughter is in NC. Definitely harder to cope with snow there!

[PMRpro Ambassador]

So sorry to hear that - how disappointing.

In the clinical trials they found there were some relapses after Actemra/tocilizumab was discontinued but restarting it brought things under control. I don't remember the details of the follow-up study though - it was published last year I think,

I don't think anyone has much experience of relapse after Actemra. The clinical trials showed that only half of patients were able to get off pred altogether - there are 3 different mechanisms involved in creating the inflammation in GCA and Actemra can only combat one of them. If the other two are involved then a low dose of pred is needed for them. Since it took 4 months to get here - it sounds as if they are there but at a low level and maybe Prof Dasgupta's line of keeping patients at 2-3mg would be plenty to sort it out. Though, as with any flare, you might need a bit more the spring clean first. And it is more than possible that you will get away with even less long term - as I keep saying, sometimes 1mg is plenty but you can't get away with none.

[PMR2011 in reply to PMRpro]

Thanks. I will look for that study. Yes, I suspect I’ll end up in that low maintenance dose group. I got the Omnicron version over née years (despite vaccination) and think that May tipped it. Luckily, it was like getting the flu for 4 days, then fine.

[Megams]

~So sorry to hear this PMR2011 - I'm blessed not to know about Actemra nor GCA but I am now into 7 years PMR.Despite many an effort just to drop half a dose which ushered another flare each time, my Rheumie did re-reminded me that I will be on steriods for life. Acceptance has been a big part of this journey for me as I now have a variety of other challenges as we do we that awful word "aging".

At least I can say with hand on heart that I tried + implemented Dorset Lady's d/s slow method.

Keep up the good fight ~

[Hidden]

So sorry to hear too of your plight, so very disappointing for you. When I read of the yrs some have been taking Pred fills me with dread. I thought I'd be lucky enough to have been off steroids in two yrs, sadly not the case and now into my third yr. PMR/GCA. I experienced a small flare of both PMR/GCA. Managed to reach 6.5mg then up I had to go. Now taking 8mg. They say that three yrs is usually the amount of time a lot of people are on Pred. So praying by the end of this yr I may be lucky and be off it. I'm just concerned what Pred is doing to the rest of my body. My kidney function isn't great. My nails are dreadful and now, think that the Paronychia is a result of Pred. I still have three little what looks like water blisters on my finger on left hand. And thick white ridges on two finger nails

Good Luck

[PMR2011 in reply to Hidden]

Sorry your having bad luck with Pred side effects. When I was on it before, I was lucky to have few side effects and those I did were able to be managed with diet, supplements and reasoned exercise. Here’s hoping for a low dose year!

[Hidden in reply to PMR2011]

Thank you. I'm better off than many others, so shouldn't complain. I take supplements and have done for years. D3, K2 and Magnesium to support the D3. I also take boron, Vit C (rarely catch colds) B12 spray, Folate to try to help my hair from thinning and krill.....I don't take them all together though. Not sure if any of these supps work, but hoping they do.

[PMR2011 in reply to Hidden]

It does seem a full time job at times doesn’t it?

[Hidden in reply to PMR2011]

certainly does

[Jackoh]

So sorry to hear this. Here’s hoping and praying that this journey will be shorter for you. 💐

[PMR2011]

In Sept when I had to stop it was in short supply. Uncertain about now. I had several doses in the fridge when I stopped and from tapering so will see how far that gets me as the insurance approval wends its way thru again. Agreed, much rather maintain on Actemra alone than Pred, tho will if I need to.

[arvine]

Can I ask please, what is actemra, I am in Ontario Canada, and have seen people refer to this med before, but don,t know if we have here, and is this used to help you taper completey off pred, Ive been on pred for over 5 yrs now, and am interested in anything that helps, I am seeing endocrinologist, re nodule on adrenal gland, just referred, so not sure when this will happen, but this last year have had lots of issues, don,t know if pred responsible or just aging, and also have not been happy with rheumy for long time now, so may be looking for new one, should have done that a couple of years ago, I regret

[PMRpro Ambassador in reply to arvine]

It is the brand name for tocilizumab, the biologic drug that is approved for GCA. It isn't yet approved for PMR and is very expensive to fund.

[PMRCanada in reply to arvine]

As PMRPro said, it’s a biologic approved for use in GCA patients, but in Canada (and some other countries), not for PMR patients.

I’m in Ontario, Canada too, and on my 2nd rheumy, who thus far is a bit better than the first rheumy, but not by much. I’ll give her a few more months and see how it goes. I do know of a good rheumy I’ve connected with in the meantime. Send me a direct message if you want that info to explore further.

[arvine in reply to PMRCanada]

Hello PMR Canada, well don,t think you,re in my area, I am in Durham Region

[DorsetLady PMRGCAuk volunteer in reply to arvine]

😊

[PMRCanada in reply to arvine]

I’m in southwest region.