Morning Stiffness still alive and kicking after 4+ years of treatment!

[Cgt1151]

Hello to everyone. It's been 6 months since I last posted. I was diagnosed with PMR and GCA in February of 2020. Though I am positive I had it for at least a year before being diagnosed. I was down to 2 mg of Prednisone the last time I posted. Did not do well on that low dosage. Went back up to 7 mg. Increased every few days til I felt better. Rheumy also put me on methotrexate about the same time. Having some side effects from the Prednisone . Massive bruising, gastro issues, osteoporosis and decline in kidney function. So he really wants to get me off the Prednisone. He acknowledges that the PMR is still active even though the labs are in normal range. I am now taking Kevzara injections, along with the methotrexate and 4 mg of Prednisone. He has started tapering me down by alternating my doses every other day and the a full month at the lower dose before alternating dosages the next month. I am on 4 mg til April 1, then I start alternating. He did say he thinks so am having issues with adrenal insufficiency. All in all I feel pretty good during the day, as long as I keep moving. My only real concern is still the middle of the night and morning stiffness. Both are still pretty bad. But after about 30 minutes I don't feel so bad. I am 72. praying this new plan will help alleviate the morning stiffness. Anyone have experience with Kevzara and also how long does it take for the adrenal insufficiency to resolve itself? Thanks for listening. You have all been very helpful through this journey!❤️

[PMRpro Ambassador]

There isn't much experience with the Kevzara as it isn't approved in the UK and is pretty new in the USA. However, it does much the same as Actemra, just in a slightly different way, by stopping the IL-6 effect. I've been on Actemra for 2 years, I have been down to under 8mg pred since last summer and have really struggled with adrenal effects trying to get to 6mg. I'm currently on the 3rd or 4th attempt at 7 down to 6mg and it finally seems to be getting there. He and I would like to get to 5mg - but he doesn't really expect me to get any lower.

I found methotrexate increased pred effects - to be expected it can happen as it is used to increase the pred antiinflammatory effect so it can also do the same with other pred effects. Even on Actemra, it was a few months before I could reduce the pred dose, albeit at ahigher level than you are, These drugs can have a few months run-in time before you can do with less pred for the PMR. As for the adrenal insufficiency - he's asking you to taper very fast at this level. There is no answer to how long it takes for it to wake up and it can be months. It may never happen.

[LemonZest11 in reply to PMRpro]

Are you reducing from 7 to 6mgs in one move? I doubt it but that's how it reads. If so, follow your own advice and halve the reduction.

[PMRpro Ambassador in reply to LemonZest11]

Has to be a full 1mg, can't cut the tablets. But there is always DSNS ...

[LemonZest11 in reply to PMRpro]

Oh that's tough. There must be a way. Even with DSNS, 1mg is on the edge. I'm not religious, even though one of my boys is an ordained Anglican, but I'm going to say a little prayer for you 🙏.

[PMRpro Ambassador in reply to LemonZest11]

It's fine - no PMR problem with the Actemra! And no pressure from my lovely rheumy.

[LemonZest11 in reply to PMRpro]

Good to hear. You are a very special person, always here for everyone, no matter what. I really hope that eventually, in time, you will make it to 5. That would be awesome. I know Xx

[julesster22]

I am 63 years old, have been diagnosed since 2017 and started with 10mg at first. Now if I feel pain in an area in my body, I use 1 mg but build it up based on levels and go back down when it subsides. I was on all the things you were but stopped bc they upset my stomach. Now I use Naproxen for extra pain but have kept it at bay for 7 years now. I give my body rest days and active days. I’m am walking about 6300 steps a day plus added fish to our weekly diet. I feel healthy for the first time in 5 years now. Reach out any time for help or support!! I am here!

[Inika]

Hi there,

I was diagnosed in 2016, started on 25 mg, had several flares down the way. I am now on 0.75 mg. I was very sensitive to the decrease of pred so we agreed with my doctor that I will go 0.5 mg a month, slowly but surely. 2 years ago I started taking 7.5 mg meloxicam daily, that helped with decreasing preds. I can sometimes stay on the same dose for 3 months if I feel a bit unstable. My doc said that it is better to stay on low dose (1-2 mg) and go down very slowly then have a flare and increase the pred again. I tried methotrexate down the way and it did not work for me at all. So some people are off pred in 2-3 years, but some (me included) have to stay on it longer. One thing that I learned down the way - is patience. Every time I rushed, I had a flare.

Good luck to you! Wish you get better!

[Paulagcl]

I've been taking Kevzara for a year and did fine on it. However, now my white blood count is low so I might have to stop it. I've tapered down to 3 mg and seem good on it even without the Kevzara at this point, so it remains to be seen from here on it. At first had exhaustion when I first dropped the dose but on this latest one didn't, or not for more than a couple of days. But everybody's body is different. I followed some dietary advice and though I don't follow it strictly, figured it can't hurt to focus on anti-inflammatory foods.

[Africschoice]

methatrexate didn’t suit me, sickness etc so I tried methatrexate injections once weekly still got every side effect there was. I’m sure your aware mtx is to get you off steroids, make sure your happy with what you end up with because your on it for life !

[PMRpro Ambassador in reply to Africschoice]

"because your on it for life"

Not necessarily - many people who are put on mtx for PMR are able to taper off it as well. It also doesn;t necessarily entirely get you off pred - very much depends. SOme people do brilliantly with it, others it only gets them down a couple of mg pred.