Has anyone’s PMR gone away ?

[MRSKI]

I am a super actuve 55 year old that was diagnosed last week... I just tried to exercise this week and feel it was not great

I am going on a ski trip this week, I hope I can ski some easy runs .. I’m feeling so upset

[Rosina1871]

Hi mrski. Sorry you have PMR. I am one of the lucky ones (so far!). I was diagnosed in Jan 19 and two weeks ago was able to come off pred. Compared with many on this site, I have had an easy journey. I would say I’m in remission and am hoping it will not return but that is not guaranteed. So yes it can go away but you need to pace yourself. Others will be along soon with greater knowledge than me. This is a very supportive site with many knowledgeable people . Good luck

[MRSKI in reply to Rosina1871]

Did you start out on15 mg of prednisone and taper for a year ? Did you do a special diet ? What helped the most ?

[Rosina1871 in reply to MRSKI]

Started on 20 and did a slow taper. Cut out bad carbs and any form of sugar. I exercised but paced myself x

[Hidden in reply to Rosina1871]

Wow, Rosina, only diagnosed this January and already off Prednisone. Would you mind letting me know the mg you were started on and what was the tapering regime. I hate to talk too soon too. I was diagnosed in December 2019 started on 15 mg and from the first of February started the tapering by 1 mg a month, so hopefully, all being well I'll be finished taking the Pred by the end of this year Do you think you did actually had PMR, was it diagnosed via a blood test to see how high your inflammation marker was? You've been very lucky indeed and that is so great. Oh just seen on one of your replies you started on 20 mg.

[Rosina1871 in reply to Hidden]

I was diagnosed in January 2019, started on 20mg. Tapered for 13 months. I’m very fortunate and it was definitely PMR. I’m hoping I don’t have a relapse

[SnazzyD]

Sorry about that; it’s a real blow isn’t it? Many of us were super active do it all types so we know your disappointment. I was 54 when my GCA happened over a weekend. I’m afraid you do need to change your lifestyle for now because your muscles will be more intolerant of exercise. You also need to avoid over doing it because the Pred only stops the damage, not the disease process. It will go in time but be thinking in terms of a year or more likely more. Some do go into remission in a year but plan otherwise just in case. Forging ahead business as usual because you’re damned if thing is going to win invariably ends in tears. Be really honest about how your body feels and act accordingly trying to ignore the false betterness the Pred can give you. It does go but it sure is a huge bump in the road.

[PMRpro Ambassador]

I skied for several years with PMR - both without being on pred in the first 5 years and then for a few years on pred until injury and illness made me reasses whether I wanted to continue on the basis of other reasons. I should say I live in a ski region, it is a 5 minute drive to the gondola and I skied up to 3 or 4 times a week later in the season. I am NOT a particularly good skier - blacks never really attracted me though I have done them in the past - and I skied for enjoyment rather than challenge. I'd rather wander down blue runs in the deserted Dolomites than do the Men's Giant Slalom run in Alta Badia which is also just up the road!

At the start of the season (early December) I had to limit myself to short runs (a km or so) so I had repeated rests on the chairlift between and the first couple of weeks 3 was the limit before retiring to sit in the sun with a hot chocolate before going home. By January I was increasing the number of short runs until I would ski all morning - but still struggled with thigh pain if I tried to do a longer run even if it was the same distance as the multiple short runs.

I skied with PMR - so do several others on the forums and others I know with PMR. Michdonn on the patient.info forum is a ski teacher - still teaching at over 80 with PMR and on pred.

healthunlocked.com/pmrgcauk...

A senior member of the Scottish PMRGCA charity was still skiing a couple of years ago - not sure about now though.

It need not stop you doing things - but it will probably require a change in approach. It is a very different matter living here as I do where I can ski once a week or daily for the same (very high price) of a season pass and the tourist approach where you ski hard and long to get value for money from that relatively even more expensive ski pass. I found I could only ski comfortably in the sun and any wind sent me straight home. But we also go up the mountain just to sit in the sun and have a drink with mates - instead of the cafe in the village.

But a warning: do be careful of fatigue. One year I'd been skiing for a couple of weeks, 2 or 3 times a week but just 3 runs each day and I thought, I feel great, I'll just do one more run and go home. I got 2/3 of the way down the run, it really wasn't far to the chair lift and I hit a brick wall of fatigue. It took me 15 mins to be able to just trundle across the hill to the lift, luckily it didn't require much effort. But I was a danger to myself and others at that point. Don't go off onto long runs where you can't bail out easily without calling the rescue services - it's an expensive and embarrassing business!

Be patient - it isn't the end as long as you are realistic and don't push your luck. And I hate to tell you - but no, it isn't a case of taking 15mg of pred for a few weeks and then tapering off over a year. Only 1 in 5 patients with PMR are off pred in a year and are at a greater risk of relapse than others. By 2 years 1 in 3 are off pred. About half get off pred in under 6 years but 40% of patients still require some pred at 10 years, albeit a very low dose.

Pred cures nothing, it is a management strategy to allow a better quality of life while you wait for the underlying autoimmune disorder to burn out and go into remission. The consolation is that at least PMR and GCA do go into remission for the majority of patients sooner or later - but how long can't be predicted at the start. Being extra fit isn't necessarily any help, it may be a disadvantage as you try to overdo things in the early stages. The pred combats the inflammation, the actual disease process is still going on in the background and leaves your muscles intolerant of acute exercise - in much the same way as real flu would. You are likely to develop DOMS - delayed onset muscle soreness - more easily than you are used to and it will take much longer to resolve when you do so it pays to avoid it. That is why I never skied more than I knew was sensible and only on alternate days at first.

[Blearyeyed in reply to PMRpro]

Such a great reply , Pro !

[MRSKI in reply to PMRpro]

Thank you

I will definitely take it easy

[PMRpro Ambassador in reply to MRSKI]

Where are you off to? Hope the weather is kind - sitting in the sun at this time of year is a balm to the soul.

[MRSKI in reply to PMRpro]

Vail Colorado

[Hidden in reply to MRSKI]

That sounds lovely.... And legal pain relief for sale. 😉

[PMRpro Ambassador in reply to MRSKI]

Are you in the UK or the USA? If the UK, remember the effect of the time change and the long flight.

[MRSKI in reply to PMRpro]

I live in the US

And going from MN to CO

[PMRpro Ambassador in reply to MRSKI]

Hardly an earthshattering time change then! Altitude change? That also impacts - but it does anyway if you are honest.

[KellyInTexas in reply to MRSKI]

We were there in August- one of my Specialty Rheumatoligist’s is in Denver. I had a follow up app there.

( we decided to overnight In Vail.)

Denver has a very good rheumatology department through the University system.

( FYI.)

[Yellowbluebell]

Could you please fill in your profile page as this helps our forum members responses more specific.YBB

[Twinwood]

Hi MRSKI, I'm a couple of months into PMR and am on 11mg pred down from 15mg. I'm on a ski trip now...mostly going well but had to take day 3 off as I overdid it on day 2 and seized up. Day 4 (today) went fine and I'm hoping to ski a full day everyday now...albeit at 90% with frequent short stops. Have a great trip!!

[MRSKI in reply to Twinwood]

Do you find your muscles to be weak ? The PMR hit me hard overnight and was not able to work out until this past week or so

[MRSKI]

Wow .. that’s great

Are you more sore than usual ?

[Twinwood in reply to MRSKI]

Was sore to start day 5....and I nearly didn't go today...felt pretty stiff this morning and decided to go up the mountain with a good book, a couple of paracetamol, and see what transpired...it was one of the best skiing days I've ever had.

Lesson - don't let the pmr take control...but do take it easy and live to ski another day!!

[PMRpro Ambassador in reply to Twinwood]

Something I found and forgot to mention was that I found that the hip action in skiing is ideal for loosening up! One winter I stored my ski stuff at the bottom of the mountain so in the mornings I would stagger to the skibus in ordinary walking shoes. After the first couple of runs I could move more easily and by the time I came home I was walking almost normally. The pain hadn't really changed but, much as I found in aquafit followed by Pilates or Iyengha yoga, I could move more easily.

[PMRpro Ambassador]

I'm talking about the immediate effect of time changes on your ability to ski when you have PMR - believe me, either way is significant!

[MRSKI]

I’m so worried to ski , but will just have to see how it goes..