5 Flares and unsure of next step

[Coxyrocks]

This is my second post after 9 months, however I regularly read the information from other posts on the site.

I've had Polymyalgia for over 2 years now and have been very slow and careful reducing, however I've had 5 flares now all around the 5.5 to 7 dosage. Each time I've added 5mg to the dose for 5/6 days then come down to just above the flare. I've always stayed at this dose for 5 weeks before reducing by 0.5 mg. When I have a flare it seems to happen after about 21 days after a 0.5 reduction.

The pain, this time,has not been gradual but almost instant from none to a full blown flare, where I can't move my neck or shoulders. This is the first time it has happened at 7.0 mg as I've been fine before on 6.5 and 6.00 mg however I imagine the inflammation just builds up.

My question is should I drop to 7.5, when I have this flare under control, even though a year ago I was on 6.0mg for 6 weeks? Any advice grateful received as my doctor has left me totally to manage condition myself.

Thank you

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that.

Unfortunately if you keep flaring it seems to make it more difficult each time, and perhaps unconsciously when you get to your “difficult “ dose you become stressed.

I would suggest this time around, once things are under control -hopefully at 10mg - you restart tapering proper from there.

Disappointing though it may be, I think you need to try and forget what’s happened and view it as a blip. 2 years into PMR, you still are maybe only half way through, so long way to go.

Stick with the 0.5mg a time, and if not already use a slow taper - just a couple of examples attached - healthunlocked.com/pmrgcauk...

You will get lower, but just forget about figures and the calendar at the moment, accept the fact that this will happen in its own time, and forget what you were on a year ago. Take it from today, and remember your body needs what your body needs!

[SnazzyD]

Did you drop in one go?

[PMRpro Ambassador]

When you repeatedly flare at a similar level it is your body telling you to stop reducing for now, you have arrived at an interim destination. You are NEVER reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms at the moment. It doesn't mean you won't get lower, just not yet. When you then try to force a reduction beyond that point you will get a return of symptoms - and if you do that repeatedly you end up yoyoing the dose and the more that happens, the harder it becomes to reduce the next time.

From watching the forums over more than 10 years, the impression I get is that the underlying disease activity that causes the symptoms we call PMR varies over time, if you plotted it on a graph you would get what is called a sine wave but one where the peaks of activity are always less than the last one. If you happen to be reducing on a downward period you may get quite low for a while but then the symptoms return as it ramps up activity again and you have a false impression of where you got to with the dose.

However - a sudden neck and shoulder problem suggests to me that maybe this isn't just the PMR. It could well be tight/spasmed back and shoulder muscles due to myofascial pain syndrome which it is increasingly obvious is as much a part of PMR as the rest. Australian research seems to me to confirm the concept that was first introduced to me by an orthopaedic researcher in Germany several years ago (unfortunately not published)

jrheum.org/content/46/12/1552

My overriding problem is low back pain - and I now have found I can deal with an acute episode with a flooding dose of ibuprofen, 800mg, and heat in the form of a hot water bottle (high tech household this!) for a couple of days. That flooding dose lasts anything up to 24 hours and following doses (if I need them) are fine at a more usual 400mg. You need to take the ibuprofen with food, possibly a PPI for a few days but I have never had any gastric problems even though I am on over 10mg pred. That is how ibuprofen was designed to be used when it was prescription only - the company were furious when it was released as an OTC item but with a recommended dose of 200-400mg which rarely works as effectively as starting with the flooding dose.

Only about a third of patients are off pred in 2 years. That has risen to half by just under 6 years. PMR isn't a short term illness - it's a "how long is a piece of string" journey. With a lot of diversions and the odd u-turn to navigate...

[Coxyrocks]

Hi PMR pro and Dorset Lady thank you so much for you wonderful and encouraging advice. I have certainly had a yo-yo passage over the past six months and knowing that this condition is a long term journey just adds to the frustration when multiple flares happen.

Your opinions and knowledge are always helpful and clearly explain the way forward. As a retired Physical Education teacher I have always been a very active individual. I just wonder whether I sometimes overdo this aspect, especially when tapering down. It maybe that I pay more attention to this and reduce my activities to help my situation.

Have you any thoughts on how physical exercise can affect the tapering process?

Once again thank you so much for all that you lovely ladies do for the PMR/GCA community. I'm sure that everyone on this site has nothing but total admiration and respect for your work in explaining how to best go about this journey we all face.

I for one do and am so thankful for finding this site.

Love and God Bless ❤️

Coxyrocks

[PMRpro Ambassador in reply to Coxyrocks]

In the days before the slowed tapering approaches we used to tell people to clear the decks the week of starting a taper and do nothing they didn't HAVE to do to give their body the best chance of adapting to the new dose. Inconvenient maybe, but it did seem to work. Using the slowed tapers does obviate the need for such extreme measures but maybe people think they can carry on as normal despite subjecting their body to a relatively disturbing change.

So yes, I think a bit less activity for a week or two is probably a good idea. I think that rest days between the activity are probably important even if you still do other things at your usual level.

[DorsetLady PMRGCAuk volunteer in reply to Coxyrocks]

Depends on how much physical exercise you’re talking about, and as PMRpro says easier on body acclimatising to new lower dose if you don’t put too much stress on it during that period.

[Janstr]

I know this may be not be right for you, but I thought I was having a flare with sore shoulders & neck. Before increasing my dose I decided to have a massage to see if it helped. The massage lady said that muscles on both sides were very tight below my shoulders ( possibly from several months using crutches). The treatment worked & I am now pain free & tapering again.