Joining you now .. needing help

[DrRon]

Simply introducing myself. Hello suffering friends. My home is in B.C. Canada. I was diagnosed with PMR 11 months ago .. up and down trip; tried reduction from Pred twice resulting in return of severe pain; bumped up recently again to 10mg, trying to see whether I can manage things with that dosage.

[Bcol]

Good morning DrRon and welcome to the forum. There will he others along later to say hi. Could you give us/update your profile with a little more information re the dose of Pred, I'm assuming that is what you are on, and a rough time scale of your reduction, tapering timescale and any other relevant medication which will help with the answers, help and advice the forum users can give. If you have some time a trip to FAQ's is a good place to start, there is factual knowledge as well as the experiences of many members there to read and digest.

[DrRon in reply to Bcol]

thank you for the greeting and the invitation to tell more as well as the reference to further reading. I’ll get back to you with info.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Without more info, would say you have tried to reduce too quickly in the past, but as Bcol says more details would help us to help you.

This general overview may give you a better steer in how to proceed - healthunlocked.com/pmrgcauk...

[DrRon in reply to DorsetLady]

I will compose a little history of my reduction attempt & invite responses .. thanks for the link

[PMRpro Ambassador]

Hi and welcome. Where in BC - there have been a few people on the forums - I met a few in Vancouver when I was there just over 5 years ago!

[DrRon in reply to PMRpro]

I am located in the city of Surrey, a 50 min drive outside of Vancouver

[PMRpro Ambassador in reply to DrRon]

I have friends in Pitt Meadows - all through PMR!!

[DrRon in reply to PMRpro]

My most recent reduction attempt with prednisone lasted four months, reducing from 20mg/da by increments such as this, each lasting 4 weeks: 20 -> 15, 15, then 15 & 12.5 alternated days, then 12.5, then 12.5 & 10 alternate days, then 10, then 10 & 7.5 alternated days, then 7.5, 7.5 & 5 alternated days, and finally 5. But at 10 I was already in pain and with each successive decrease more pain. So I was asked to go back up to 15, or begin @10 and see if that works .. well that’s where I am, and so far OK together w/an occasional Nsaid painkiller. -- Was it too fast? or were the initial reduction steps 20,15 to sudden?

[DorsetLady PMRGCAuk volunteer in reply to DrRon]

Probably would have been better - 20-17.5-15-12.5-10mg…4 weeks at each. But it was what it was.

Once below 10mg the guidelines do say 1mg every 4-8 weeks depending on patient’s wishes and disease activity.

Although some Rheumies like alternated days…personally I’m not sure the body or the PMR does! It does seem to be more common practice on your side of the Atlantic…not a criticism, just an observation.

As for now…are you really okay at 10mg…..not if you’re adding in a NSAID, which isn’t recommended alongside the Pred

If it’s borderline, it might be sensible to compromise and go up to 12.5mg….if you don’t want to do so, then please at least stay at 10mg for 3-4 weeks and get things under proper control.

There is no point in rushing, or being rushed into too fast a reduction as you have discovered…..PMR works at it’s own pace..and cliched as it might be - you need the dose you need!

Better luck this time around.

[DrRon in reply to DorsetLady]

Thanks for that interaction DorsetLady. At 10 currently, my nights are broken, lost of wakeups for potty breaks and with each wakeup, increased stiffness & pain, so often just get up @3,4,5am. - Someone else on this page suggested 10 in am, 5 at noon and 5 at supper ... sounds reasonable. what do you think? - I could go to 12.5 to see whether I could stop Nsaids.

[DorsetLady PMRGCAuk volunteer in reply to DrRon]

We do sometimes suggest splitting dose as you say….but I would be inclined to try the 15mg initially, you may find the extra gets you through to a more acceptable time.

Maybe try for 7-10 days..…if it doesn’t do the trick, then you could trying splitting. But don’t do both things at once….

[PMRpro Ambassador in reply to DrRon]

If you do ever decide to split the dose there is no need to go to 3x dosing. The usual recommended split is about 2/3 in the morning and the rest late enough to carry the antiinflammatory effect over until the next dose 24 hours later is due. The antiinflammatory effect lasts 12-36 hours depending on the person - much longer than the pred is actually present in the body. If you can find the time for the second dose that gives you a good morning, then you may find you get it all better under control.

Another option is that the recommended time to take prednisone for optimal relief of morning symptoms is about 2am (prednisolone can be taken about an hour later as it doesn't have to be processed by the liver to be activated). The inflammatory substances that cause the symptoms are shed in the body at 4- 4.30am and taking pred at 2-3am means it is present early enough for no inflammation to be created - with the result you have a good morning and often the pain doesn't return for much longer. You are up at 3am - worth a try?

[PMRpro Ambassador in reply to DrRon]

To add my take: far too fast - the rate to 10mg may work for a lot of people but by no means all. These are reducing rates for getting OFF pred, you aren't getting OFF pred, you are looking for the lowest effective dose and early days that will be higher than later. If you were already in pain at 10mg, it went wrong for you after 12.5mg and that is where you needed to slow down drastically. Going slower doesn't get you lower than the dose you need - but it does identify the dose you need at present much more exactly and it is perfectly possible that you can get to 10.5mg and be fine, 2mg less than their way. Half a mg can make a massive difference.

[MaritimeMags]

EVERYONE IS DIFFERENT - after upping and downing your dose of Pred you will probably just find what dosage and reduction rate is the best for you in relation to aches and pains. It also helps with blood tests.Diagnosed nearly four years ago, my GP at the surgery has mostly dictated dosages and reduction rates, using blood tests for my Inflammatory Indictors. Sometimes there would be six months between tests - at first I did not know that these blood tests should have been more regular so I now remind my Surgery every two months or so.

I have only seen a Rheumatologist once (after three years) but that was at my request because I did not have any type of flare up for three years and wanted reassurance I actually had PMR - some of the symptoms of which can be confused with other conditions.

I have been lucky compared with some people. My first, and only, flare, so far, was two months ago, when I had been on 2mg for about 18 months. I had to decide to up the dose of Pred to 11mg myself as I could not get a Doctor’s appointment at my surgery for four weeks. Now reducing, monitored by my GP.

If you find an ‘ideal’ dosage to stop your pain, the Pred may not kick in straightaway - it may take a few days.

Like I said, EVERYONE I S DIFFERENT. Good Luck 🙂

(Sent from U.K.).

[PMRCanada]

Welcome fellow Canadian 🍁🇨🇦

Many folks on this forum have provided some great guidance already. In the first year we tend to be on an exploration of what works best for us, and process/accept that we have a chronic illness. This usually means making some adjustments to our lifestyle, and understanding what we can control (diet, rest, activity, support from others)….and what we can’t (level of disease activity, why we developed it, or when/if it will burn out). Be patient with yourself along the way.

Of note, I’ve had PMR for 3.5years now, and doing much better than those early months. The one challenge remaining is my taper/dose of pred (currently at 9/8.5mg). I’ve flared 5 times due to too big of a drop at once, or going lower than my body needed. I’ve tried to learn from this and know my body works great at 9mg. I still do wish to lower my dose and get down to 5mg. I split my dose and take 2/3 of it at 11pm in an enteric capsule (which I purchased online to delay the dose from being metabolized until 2-3am when the inflammation builds, resulting in morning stiffness). I take the second (1/3) dose at 11am. This helped greatly with stiffness/soreness! I did, however, consult with my GP before trying it.

Know that we are always here for the forum members and “get it” better than most who do not have a lived experience with PMR/GCA. Listen to your body and symptoms….they are the key to managing this condition (along with bloodwork results if those are accurate for you). A good doctor helps!