First real flare-up, any advice welcome

[Laineydee]

Hi, I’m four months into my PMR diagnosis and after a long, slow start on 15mg pred, I have managed to reduce slow,y to 9 mg, managing to lead a normal life with fairly normal activity. In fact I was cruising along, aiming to reduce to 8 mg in four weeks’ time. However I have just returned from a five day trip away with disrupted routine but also two long car journeys of 7 hours each way, during which I did some of the driving. The day after getting home, I am experiencing what I take to be my first flare-up. Although the pain is not really severe, I am in a lot of discomfort in my hips and hands and wrists and have little energy. My question is - should I ride this out and hope it will settle with rest, or should I be upping the steroid dose back to 10 mg for a few days? I am reluctant to go backwards after everything was going to plan but would welcome any advice. I’m finding this site such a help and so reassuring. I’m sure someone will have some good advice for me.

[MrsNails]

Morning Lainey, The perils of a change of routine plus a 7hour car journey….

I always say l’m doing OK if l stay in ‘MrsN’s World’ ie everything is at my pace & then l can tick along.

Car Journeys are very hard on the body especially long ones & l used to seize up even though we’d stop every hour! I want to go visit my friends to see their new house but l know the journey will be too much so l’m planning on splitting it & staying over on route.

We always discuss Tapering before Holidays or Big Events & from most of our experiences it’s not the best idea!

So yes l think it would be advisable to go back to 10mg until you start to feel better & then start your taper back to 9mg

Kind Regards

MrsN

[Laineydee in reply to MrsNails]

Thank so much for sound advice. I must say it hadn’t occurred to me that a long car journey could do the damage. I will go up to 10 mg straightaway and hope that does the trick. Thanks again.

[DorsetLady PMRGCAuk volunteer]

Hi,

This post includes advice on dealing with a flare, but you may be able to catch it with a slightly smaller increase….as you suggest. You’ll just have to try and see.

healthunlocked.com/pmrgcauk...

But as you’ve discovered, like many before you, you may be swimming along nicely living ‘a normal life with fairly normal activities’…but if/when you try to do something out of the normal routine, your PMR will remind you it’s still there!

In future, just remember you may need a bit more pre-planning

/consideration/extra Pred? …..so you can still do it, without wiping yourself out afterwards.

[MrsNails]

As DorsetLady & Myself (not together) have flown to NZ & Australia while on Pred but factored in time differences, plus the Stress of Travel 😉 When you’re settled it’s amazing what you can achieve as long as you realise things will be different. I went to the Far East while on 7.5mg but split my dose (which l’m not a fan off) so l could get up early to be off out on Tours & l achieved it as l thought l may never pass this way again!

DL maybe we should think about a Post on Travel for FAQ - not that we need it for long distance travel now but we could put out experiences & recommendations down about travel & pacing? You can tell l’m on additional Pred 😉 ✈️ 🚘 😂

[Lilly-Gee in reply to MrsNails]

Yes great idea 💡👏

[PMRpro Ambassador]

"I am reluctant to go backwards after everything was going to plan"

I fear there is no plan with PMR - you have to tread carefully as you go down and be watchful for a poke in the ribs that the disease activity is still partying. To be below 10mg after 4 months is really rather speedy - and one very good approach keeps people at 10mg for a year, That is maybe a bit OTT bit it does reduce the flare rate from 3 in 5 to 1 in 5. I think that says a lot. Flares are common in the first 18 months, flares are almost always due to overenthusiastic tapering. Ergo, ca canny. PMR really doesn't care about YOUR plans, YOUR timetables. It does its own thing,

Travelling really is a very difficult thing to negotiate. I can travel very long distances as the driver without payback - very different matter as a passenger. I think it is because as the driver you are constantly shifting slightly - changing gear, moving your arms with the steering wheel. Like the others, I have flown halfway round the world with PMR, both treated and untreated in the first 5 years. There are ways of making it easier - above all, splitting the journey and using all sorts of aids.