PMR - What do you wish you had known . . .

@tweetypie13 Yes - I started Kevzara on May 18. So I've had 3 doses in total (every other week). One more coming up next week.

Not sure I've seen any improvement, and my rheumatologist feels it's too soon. I did try to back off the prednisone but 13mg seems to be my minimum right now.

Going to try the week after next to dial back 1mg every other day (12mg, 13mg, 12mg, etc.) She said try that for a week or two. Then stick with 12 for a week, until after the next shot.
Initially, she didn't seem to be on the same page - rushing to get me off - and that didn't go well.

@pmrsuzie Hi, I too was surprised there were no pamphlets on PMR in my rheumatologist office. A friend sent me five books purchased, on Amazon, all about PMR and low inflammation diets.
The book I liked best was Polymyalgia Rheumatica, A Guide to Understanding PMR by Belinda Hanson. It’s only 95 pages, and packed with good information in a clear easy to read format.

I knew nothing about PMR when I went to see my rheumatologist for the first time. He only prescribed me a month’s worth of prednisone to completely taper off of in that time. He then wanted to see me in two weeks after that. Ignorantly, I said, “So I could potentially be rid of all of this in a month?” He actually told me it’s possible! Really? I’ll never understand why doctors cannot be more honest and straightforward. I don’t want false hope, I want to deal in reality. He should have told me it’s a very long process for the majority of people. After reading several books about the subject I quickly learned how ridiculous that was. I knew then I was in for a very long journey.

I’m only six months into it and have tapered from 20 mg to 6. When I got to 6, I had to increase to 6.5 because the pain started to come back. I’m back down to six again and holding, doing OK so far. The doctor wanted me to taper a milligram a month. But I can see moving forward, at these lower doses, it is most likely not going to happen. I plan on only tapering by a half a milligram a month and doing the alternating high low tapering you will find on this forum. I will start it beginning of July and will report back how it goes.

Knowledge is power. Best of health to you, and all.

@grownupcf ….Ok, breathe, and wait. Kevzara can take up to 3 months to kick in. I was at abt 8-10 mg of prednisone when I started Kevzara. I was able to taper off prednisone totally by 3 months after starting the Kevzara.
I have no other health issues to deal with.
I’m sorry, if the following is a repeat, I don’t recall your history.
Have you passed thru the cortisol stage? That will have a slowing effect on your tapering. Is it PMR or cortisol issues? Here’s a bit from AI
“ Tapering Challenges: When patients undergo long-term steroid treatment, natural cortisol production can slow down or temporarily stop. As the steroid dosage is lowered, the body must adjust, leading to symptoms that can feel like a PMR relapse.”
As for tapering….. my drs advice was not to drop more than 10% at a time….stay at that dose until pain free for at minimum 2 weeks before tapering again .
As I got lower it was harder to taper (sometimes only .5 taper) and I stayed at steady pace until I was truly pain free.
Kevzara did help me, but getting there is still a journey.
Rushing won’t help PMR leave your body, our ultimate goal.
As for Kevzara, their website is pretty good with info.
Keep asking questions……we all learn.

@tweetypie13
Me too! I started my taper and when I got down to 2mg, I started Kevzara and life has been wonderful!

@brushetta13 thanks for your comments. Congratulations on making it to 1 mg! My weight really fluctuated too but has now managed to even out and I feel more like my old pre-prednisone self. Hope your eye and thyroid issues clear up soon. It will be wonderful to get off this stuff- I was on it for over 2 years too. I am grateful for it giving me my life back when I was first diagnosed with PMR, but I am so ready to be done with it. You are right that it really does help to share experiences with others dealing with the same thing. Best of luck to you - hang in there!

I’ve been on Prednisone for over a year.
I started at 10mg went down to 5mg and then back and forth with tapering. I have fought taking the stronger medicine but I finally am going to give in and take Kevzara and see if that will take it away. I’m not looking forward to the needle or the side effects it has, but I don’t think I have any more choices or fight in me!!!! Judy

@sfink I hope you realize that the nighttime dosing is contrary to the approach used to take your dose in the morning in an effort to mimic your adrenal glands release of cortisol. This works to keep your circadian rhythm consistent.
My Rheumy always says every patient is different. Glad it works for you.
I know I would not do well on a nighttime dosing schedule because even small prednisone doses taken in the morning can disrupt my nighttime sleep.

@pmrsuzie If the doctor is wanting you on Kevzara then you should go to their website and see what financial support options are available. Very often drug companies have financial support programs available, also there are possibly non-profits in your area that also provide financial assistance for needed drugs. Your doctor's office should be able to refer you to a medical social worker who can assist your navigation of the system.

@judy15 Is your doctor suggesting you take one shot a week? You might ask about taking one shot every other week. This is also a standard dosing protocol. Another thing to consider is Kevzara comes in two strengths 150mg and 200mg. You could request 150mg also.
Since you are down low on your prednisone you may be good with a reduced dose and/or a reduced dosing protocol.

@tweetypie13 Question for those on Kevzara. Who brought up the subject on taking it first, you or your doctor? Was it due to tapering issues or other health complications requiring you to get off prednisone? Just curious. Thanks.