Has anyone seen a pattern?: I know, that's exactly... - PMRGCAuk

PMRGCAuk

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Has anyone seen a pattern?

ponai profile image
19 Replies

I know, that's exactly what is so frustrating about this condition... there prob isn't one. My two year anniversary is coming up (still on 2 mg) which is how long I'd bargained for, though I have learned from this place that that was optimistic. But I wondered what form recovery takes when it comes. My GP said I could just wake up one morning and find it gone (ha). Compared to last year, I am sleeping better, I am quite comfortable when doing nothing, I'm using much fewer painkillers etc. Possibly I've learned to manage it better. But I was wondering if any of you who have recovered saw a pattern towards the end. Were there good days and bad days, or did it gradually lessen and then disappear? My wrists were hurting the other night, and I vaguely remembered someone saying wrists were the last thing. My painful neck- which is how all this started- returned for a few days and I thought maybe it's circular, back to the beginning and then it will stop. It didn't. It would be cheering to think maybe I'm half way, or even nearly there. Any ideas?

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ponai
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19 Replies
Daisychain12 profile image
Daisychain12

I hope you get some answers Ponai but I have a feeling it may be hard to pin this one down.

SheffieldJane profile image
SheffieldJane

I wish it was predictable like that. In my experience, recovery is not linear. More like snakes and ladders. I’ve had some false dawns - nice while they last, inexplicable when they end. I keep telling myself patience and acceptance, but it’s hard.

Rugger profile image
Rugger

I had bargained for 2 years too, but the PMR thought differently! I'm at 2.5 years now and tapering to 6mg, after 2 flares along the way.

I'd be more than happy to be at 2mg and bide my time.

Let's hope for remission soon - whenever that may be!

bunnymom profile image
bunnymom

I am at 2 years 7 months (like knowing the ages of our babies) and thought I was getting near the end when I was on 5. Had a flare back to 7 and hoping it holds. I wished the other day that I could some how escape from my body but my husband pointed out I'd then be dead, haha so not really a good idea after all. I very intentionally try to live a cheerful life but some days are harder than others.

kulina profile image
kulina in reply tobunnymom

Sometimes I feel the same way but I always, always remind myself that there are worse conditions out there. I consider myself lucky that I have PMR. The same summer that I started with PMR my friend came down with transverse myelitis, he is in a wheelchair now for the rest of his life. So, yes, we're lucky there's a light at the end of the tunnel, no matter how long the tunnel is. :)

markbenjamin57 profile image
markbenjamin57

Greetings ponai

If it helps, my best guess is that the PMR inflammatory cycle waxes and wanes in intensity during its course, a bit like the cycle of tidal flows? That is, a daily cycle combined with (hopefully) long term reducing intensity.

As many of Us Lot know, it can be very hard to identify a clear pattern, especially when other factors conspire to disrupt it (e.g. any or all of variables like co-morbidities, viruses, infections, over-exertion, diet, climate, stress etc). But yes, in my case at least, I've noticed a long term pattern of reducing pain, stiffness and fatigue: and generally feeling 'better' on aggregate - especially now at lower doses of Preds. As Jane says, it's a bit of a Snakes and Ladders journey...

I've been pretty well symptom free and quite active for several weeks (Hoorah!), but cautiously sticking at 2 mgpd Pred after a couple of flirtations with Pred Club Zero and with slowly returning symptoms. Your GP seems to have the right idea - i.e. PMR can (I stress can..) burn itself out quite suddenly for some people, depending on their context.

That said, and as others here report, for the duration of PMR, many of us have been far less fit and active compared to life pre-PMR: and so it takes time to get back to 'Normal' fitness and energy levels even when PMR has gone into remission. And, of course, we are also now a few years older to boot!

I'm sure the forum Aunties and others will be along soon with their thoughts too... :-)

MB

stellafmdm profile image
stellafmdm in reply tomarkbenjamin57

However! my cautionary tale follows. I felt suddenly very well and energetic and was rejoicing greatly! Only to discover that the reason was that my blood pressure had sky rocketed!!! Went back on the BP tablets which I had abandoned because the BP kept going through the floor. Not so energetic now but nevertheless OK. I would actually prefer the energy from high BP but I know it is not a good idea so am continuing to take the tabs. 😒

Valnvaughan profile image
Valnvaughan

I have so much pain from osteoarthritis that I wonder if my PMR is gone. I have my second hip replacement in 17 days time. After number one in May 18 the pain in that hip disappeared immediately, tho' there was operation discomfort. For first op I had reduced Pred to 5mg per day. Now on 2.5 mg per day, but can not detect any change in symptoms.

PMR since June 2015. Started at 15mg, several 'flares' eventually hip degradation found.

Will hold at 2.5mg whilst I recover from op and then continue using DSNS in 0.5mg steps. Fingers crossed. Maybe there is a light at the end of the tunnel.

ponai profile image
ponai

Thanks, everybody. I do find your anecdotes helpful. Onwards...

PMRpro profile image
PMRproAmbassador

Depends how you look at it doesn't it? To be on 2mg after 2 years is terrific - you have achieved your goal at the outset: identifying the lowest dose that manages the inflammation as well as the starting dose did. 2mg is a really low dose - it doesn't mean you could necessarily manage without it but it is not doing you any harm at all - your body is producing more corticosteroid in the form of cortisol than you are taking as pred.

Mitziecat profile image
Mitziecat

Hi Ponai

I am fairly new to pmr (19 months officially) but suspect it was beginning a few months before that. I can only go on my own experience & have approached it with an open mind. I noticed symptoms after tapering but they then settled and now on 1 mg. I am nervous about going lower but currently have no reason not to try. I have noticed that if I am relaxed and not stressed I have practically no symptoms. If unwell or stressed I get mild symptoms but they go with rest. I currently have a cold & became stressed with recent osteoporosis diagnosis but have not increased the pred, just won’t reduce until feeling better (also delayed flu jab).

I think I have got used to being pain free but forgot that I did get normal aches and pains pre pmr that came with age, including work and all the demands that go with it for the older worker. I am constantly working out what is pmr symptoms and what is normal aches for my age. I don’t think I will wake up one morning and it will be gone but would be happy if my next reduction of 1/0 is also successful. Time will tell but no set pattern that I have observed. Just go with your own body.

Sorry for long answer. Off on holiday soon & will be packing extra pred just in case 😀.

ponai profile image
ponai

Thanks- deciding what's PMR and what's normal pain/ageing is an issue, though I think I can recognize the difference. My GP said I'd be dancing about once the pred took effect, and sadly that never happened! But it's so helpful to hear other people's experiences/advice as they make sense, and I really can't explain what's going on to civilians.

PMRpro profile image
PMRproAmbassador in reply toponai

Honestly - you'd think they'd learn eventually wouldn't you!!!!

piglette profile image
piglette in reply toponai

My rheumie said I would be running marathons!

ponai profile image
ponai

Actually, Mark's comments on just feeling better overall towards the end were interesting. The random pains and weaknesses are still there, but I've been cooking for guests this morning and it feels less of a mountain to climb than it would have even a month ago. I might even have enjoyed it. So one can have symptoms but still feel better- which is def progress!

markbenjamin57 profile image
markbenjamin57

Yes, important to try to see the bigger picture symptoms wise. But I know that's not so easy on a bad day (or week.. or month..)! ;-)

Telian profile image
Telian

For me GCA March 2014, PMR 2015/16 - last year was the worst for pain, stiffness and lack of mobility. I didn't notice an instant relief but gradually started to move around more easily - still had terrible neck and shoulder pain, Rheumie did Ultra Sound and said Osteoarthritis was across the shoulders, I'd already had surgery in one shoulder, elbows, hands and wrists. Only after he told me that he thought the PMR was inactive did I take stock and think he maybe right. I also look and feel much better this year. I'm not as tired but still have to pace myself. My neck is the worst, it tells me off constantly but my legs are much stronger. I'm on 4.5mg and struggling to get lower - so for me I'd say both - good days and bad days as it gradually lessened! When I'm tired it's a pleasant tiredness where I'm quite happy to sit there doing nothing.....compared to feeling absolutely knackered - It's my 'listening to my body' routine - thought I'd better take a leaf out of my own book as I'm always saying it to everyone else - it appears to be working but it maybe coincidence, as I think the PMR only goes when it's ready....I've started aquarobics (could not have even dreamed about it before) but am restricted to certain movements - the neck and spine are the worst but my limbs feel so much lighter since been going - still not the same as before PMR but we are getting older in the meantime....

ponai profile image
ponai in reply toTelian

That's interesting- thanks. You have to develop skills to manage this condition esp when you're balancing it with others. I'm very cheered up by all the replies.

Telian profile image
Telian

It surely is a balancing act and does not always work the same twice, I am a recovering BC patient with stable MS - I think it helps to know how much more difficult it is for some - I too count my blessings when I read about others.... I'm pleased you're cheered up, a psychological boost is always welcome. ATB.

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