Flares trying to get from 9 mg to 8 mg

[proactive]

I got PMR in May 2023 and I was diagnosed in Sept 2023. I started on 20 mg and have tapered down to 9 with just one flare.

I did a 5 week taper March 1st, trying to get from 9 to 8 mg, but at the end of the 5 week plan on an 8 mg dose, I started getting groin and hip pain and morning stiffness. I tried increasing to 9 mg for a few days, but PMR symptom worsened and I ended up using the flare protocol and increased my dose by 5 mg for 12 days then dropped back to a dose of 8.5 (slightly above where I flared).

I may have flared due to the timing of a new calcium supplement started taking for osteoporosis a month before that taper. I changed the timing of that so that it shouldn't interfere with the absorption of my prednisone.

I started a new 5 week taper May 12th, this time only trying to reduce by .5 mg from 8.5 mg to 8 mg., but in the middle of week 3 I started having groin pain and a couple fo days later hip and shoulder pain.

Do I need to implement a flare protocol again, or can I just up my dose to 8.5 and hold there for a while before trying to taper again?

[DorsetLady PMRGCAuk volunteer]

I’d be inclined to go back to 8.5mg and sit there for a while..it sounds as if you have come to the lowest level that controls your PMR needs for now. Won’t always be, but it is at the moment.

As we say many times, you are not reducing come what may… and no matter how slowly you reduce, you will only get lower if your PMR allows it… so sit tight, and try again in a couple of months… when hopefully you can.

[proactive in reply to DorsetLady]

Thanks. Makes sense. I'll "explain" it to my GP when I see him June 3rd.

[PMRpro Ambassador]

GIve up trying to taper for now - you aren't heading relentlessly to zero come what may: you are establishing what is your lowest effective dose in a process called titration. You have done that perfectly: overshot the dose and got a return of symptoms, controlled it and confirmed it!

It doesn't mean you won't get lower - just not now. Wait a couple of months and try 1.2mg again. If it succeeds, great. If it doesn't, rinse and repeat.

[proactive]

Thank you. that's what I'll do.

[Zebedee44]

Hi, that is exactly what happened to me in following doctors advice and not understanding the titration process. By chance another (younger) doctor in the same practice observed that I had probably overshot the dose I needed to be on. Sadly he didn’t tell me how to deal with it so I started again by adding 5mg and tapered from there rather than dealing with the flare and resuming just above where I left off which might explain why it took me almost five years to get back to where I started.

I don’t think I was aware of the flare protocol outlined on this forum at that stage in my PMR but I have since and it is very effective. It’s a shame the doctor didn’t advise me better. This forum has supported me through every twist and turn of my seven year journey and is my go-to for advice, information and support every day.

.

[Rosshigh]

Hi I haven't posted for quite a while as I have been off prednisone now for well over a year.I was diagnosed in 2020 and it took 3 years to completely come off steroids.

Unfortunately as a few people know I eventually just ignored my GP and trusted people on this website, particularly PmrPro and Dorset Lady.

Just wanted to thank them and everyone on this website because I couldn't have managed without the help I was given.

I'm keeping my fingers crossed I do not return to the pain I had.

Thank you all for your support 😍😍

[PMRpro Ambassador in reply to Rosshigh]

What we are here for - and please, would you post a thread telling about your successful journey. The evidence people get off pred helps new patients but most people like you disappear and don't see the pleas for encouragement that it will end,

[Rosshigh in reply to PMRpro]

Will do thanks again 😍

[DorsetLady PMRGCAuk volunteer in reply to Rosshigh]

Good to hear… and ditto to PMRpro’s comment re new post.

[cranberryt]

Since 9mg is the last effective dose, I would go back to 9 for at least 3-4 weeks and then try again, very slow and only 1/2mg drops. 1mg under 10 is too much for most people.

[DorsetLady PMRGCAuk volunteer in reply to cranberryt]

314 weeks😳….know you meant 3-4 weeks 😊….

[cranberryt in reply to DorsetLady]

bwahaha! Thank you for clarifying that. I am a terrible phone typist.

[DorsetLady PMRGCAuk volunteer in reply to cranberryt]

`Happens to the best of us…🤦🏻‍♀️

[catdance]

I had 4 flares/relapses. 2 were a result of the covid vaccine. I had made it down to 4 mg from 20mg successfully before the first flare. Yes my Dr was insistent on getting off the prednisone but learned, along with me, that tapering too quickly can have negative results. I definitely would follow the experts, (PMRPro and Dorset Lady specifically), as well as others. They are a treasure trove full of knowledge and first hand experience! I agree, you should stay at the current last dose that was effective for a bit. However, when you feel you are ready. I have since discovered Vitamin D3 5000 units along with Vitamin K2 MK7 50 mg, higher at first up to 10,000 units & 100 mg, worked for me to help with tapering. I am currently down to 5 mg tapering to 4.5mg. If you are getting enough calcium from your diet or other supplements, you do not need to take extra calcium, it can cause more issues than help, like kidney stones. The vitamin d3 sends the calcium to your bloodstream and the vitamin K2 pushes it into your bones. The vitamin d3 also helps with the inflammation so it makes tapering easier. Exercise, specifically weight bearing, is significant for building bones. Walking as well as weight lifting is recommended. I also find that stretching exercises and massaging also help a lot with the pain. Don't get me wrong, I still have some bad days but I'm chalking it up to my adrenal glands not functioning properly yet.