Recently I had occasion to spend two days out of five on a long train journey. Each journey was more than twenty-four hours, and I had a three day visit with my daughter in the middle. When I got off the train upon my return home I could hardly move. My legs were all seized up, and my shoulders ached. I felt, in other words, very much like someone with untreated PMR. But I reasoned it was possible I felt like this because of lack of exercise during the return journey and decided to wait for a couple of days before taking more pred. Normally at a point where I changed trains there would be a two hour break and a chance to really stretch one's legs, but our train was late so all we could do was cross from one side of the platform to the other, and then be on our way. The other stops where people often get out (usually to smoke, not walk, I've noticed!) were either shorter as they made up for lost time, or while I was at a meal, so there was no exercise other than walking the length of the train.
So for two days after returning home I took my 1.5 mg and went for walks, which at first were basically just hobbling along. I had difficulty doing my physio exercises. In other words, I felt like I had full blown PMR again.
But day three comes and I feel better. And by day four I was back to my current "normal" whatever that really means.
No flare. No pred increase. Just patience in response to an unaccustomed situation. If the pain had persisted or worsened, that would have meant a different ending to this story.
Just thought I'd post this as it may help others who experience a similar reaction to life events beyond their control.
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HeronNS
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Glad you held out and eventually recovered. I remember someone on here suggesting to wait a few days before upping pred as initially it could be pred withdrawal or DOMS (delayed onset muscle soreness for over activity (lack of physical movement and then movement in your case).
The last time I waited too long and it became apparent that indeed I was experiencing a flare as the symptoms got worse over the 3 week period (sigh), so then I upped pred for about a week and tapered back down.
If my symptoms had got worse I wouldn't have been able to move! It was actually quite astonishing to me that I did recover in a couple of days considering how bad I felt. I would definitely have raised the pred if there had been any worsening but I'm glad I didn't need to; this time patience paid off.
Glad you managed to do the visit without too much "damage". It is hard for our bodies to be distracted from our normal routine. That stiffness (and fatigue) hits hard when I return from family events. Like you I don't shift pred up, but pain relief upped a bit. Once I am home i would say it's the fourth or fifth day when I feel like my pre-visit self. And the dog gets a usual walk rather than being dragged up the street. I am glad it's not just me. Like you say if it went on into a flare the following week then yes to pred, but sometimes it's just tiredness and for me a reduction in time stretching and pampering my body.
Yes, I was fine. I had time for a stroll in the Montreal train station (lugging luggage as I was travelling alone) and got out during the station breaks. I did not, however, have my usual brisk walks during my visit, we were strolling , my daughter being now eight months pregnant, plus we were walking a dog who liked to check pee mail of course. Nor did I do my physio exercises. It was hot and we all felt lazy. So I probably started out on the return journey at a slight disadvantage, but I have to say I didn't expect to feel so horrible for so long - thought a walk after I got home would loosen everything up again. If it had lasted one more day I would have given myself a prednisone boost.
I am cautiously optimistic that it really is 1.5 now. But I've been here before, so not going to attempt another taper for a while. This is where I did flare before when trying to go to 1 mg and that was two years ago so it's taken a long time to get back here! Basically I spent my first year going from 15 to 3, then the next three years going from 3 to 1.5. Ridiculous, really!
It does sounds weird and it shows that such low doses do make a difference. It seems it's better to go as slow as you have from 3 to 1.5 as so far you haven't had to go up back up to 15mg. My fingers are firmly crossed. (╬☉д⊙)⊰⊹ฺ
The highest I ever went during the flare management was 7 and I don't remember but think it was only for a couple of days. That was the extra 5 mg above last good dose which is recommended as a way to clobber a flare quickly. Took me a while to admit I needed to do that, though!
That's been my go to strategy too. I am hoping staying at 6mg for 12mths minimum stops flares. There seem to be fewer happening now. If I am on this dose for a couple of years I don't mind. If I am well otherwise from fibro etc I am ok with quality of life.
Just shows how a change of routine can affect us. You must be pleased with your recovery though. It must be as a result of your fitness regime that you’ve recovered relatively quickly, don’t you think? A lesson for us all - doesn’t matter how little we do it counts. I recall a physio saying it doesn’t matter how little movement you have try to do something to keep you moving! Easier said than done I know.
......and does it mean a repeat visit in a months time?
We are going to let them tell us when they are ready for company. I think they are grateful that both sets of grandparents (we all live in Nova Scotia) are allowing them to cocoon before we arrive! It's not like we live nearby and can drop in for a couple of hours and then go away again. We'd be "company" even if not very demanding, possibly even slightly helpful, company. So I'm anticipating something like early to mid October - which would be nice actually because the leaves will be beautiful then. And then maybe sometime during the Christmas season.
Think FaceTime is specific to Apple phones. I had one bought for my birthday and they do have good FaceTime reception plus battery lasts longer on it. My previous Samsung phone ran out quite quickly compared. Much better capacity now.
I wouldn’t have bought myself one but they were fed up of me not being able to store all the photos I like to take!
Think a new grandchild is worth the investment! Is this you first?
You can have a Skype account with other phones though.
The problem is this. Neither hubby nor I are up to driving the distance any more. Look at a map and find Halifax Nova Scotia then consider we have to get to a town roughly halfway between Montreal and Toronto. Air is faster and cheaper, but involves the hassle of flying, and plus we still aren't at our destination and have to get on a train or bus to get there. The train is expensive, but takes us right through their town, but is a journey of over twenty-four hours. No matter how you look at it, it's not an easy trip to make, and neither my husband nor I are as young as we would have been had our daughter had her first (probably only) child ten years ago and not have been heading into middle age as she is. We are, I have to face it, fairly aged now. Her partner is considerably younger, and his parents correspondingly so. They drive there! So, chomping at the bit as we may be, it makes sense all around for us to wait. Daughter will have recovered physically, baby will be (face it, 'tis true) prettier and more conscious to its brave new world) Grandpa will have fully recovered from his corneal transplant, and Grannie from her previous trip. Nice thing is the new mother has opted to take an eighteen month mat leave!
I agree entirely - all plausible reasons to stay put. You’ve answered my question just put to you in another text. Age makes such a difference and 24 hours for a short visit is no fun - we get to Australia in that time and that’s flying. You’re doing what’s right for you I would say.
For much the same circumstances but different reasons we are moving back to be near our eldest son - it’s taken 2 years for me to agree but I’m ready now. Just waiting for a date.
All our five grandchildren were born while we’ve been away. Two were taken to Australia when 2 and 4/12 years old - that was a killer for us - but you just have to get on with it - tables turned now they come to see us as hubby unfit for the long haul.
You can travel either way. The first time my daughter was in Ontario I travelled up in economy and the seats were very comfortable, much much better than a plane. But when hubby and I went up together we got a cabin or whatever they're called. That wasn't as comfy at night but you have your own washroom, plus meals and a few other amenities are included which make it more of a holiday experience. That's how I've travelled since. I think I've been there three times now. Would have been more but the condo issues prevented us from leaving town for months.
A really good example of the importance of patience. I've had a few incidences like this where I know the pain could be associated with a change in activities and my muscles are just taking time to recover, but it's so tempting to consider a flare.
When I'm facing a strenuous day, I take 1mg or .5 mg extra before the stress comes on. I don't suffer at all. It's a minuscule difference in the overall dose, and in the end, I probably have taken less rather than more pred. No flares at all since taking over my taper and dosage for 3 years now.
I've rarely had to do it for more than 1 day unless there's a couple of feet of snow (which requires a lot more energy and physical activity to navigate), or I've caught a cold.
By contrast I have never taken extra pred "just in case". I feel pred is far too serious a medication to be used that way, although I know many do, apparently without harm.
I have to be 99% certain it's a flare before I blast it. Occasionally I have accidentally taken more and these days it makes no difference....hoping that means PMR not so active.
What I do in adjusting my pred is neither frequent nor casual, nor is it "just in case". And it is approved by my rheumy, who has come to understand that preventing flares and injuries from falls is more important than counting milligrams.
Sadly, I don't get to just sit and watch major weather events from the window. I have to travel back and forth to work every weekday, including a mile of walking in each direction during a commute that lasts 1.5 - 2 hours each way on a good day. Last fall, during one unexpected snowstorm, it took more than 6 hours to get home. I took and extra 1mg for the following couple of days, resulting in an extra 2 mg. No flare. Over the course of a year, that kind of weather event may happen 6-10 times when hurricane fronts or nor'easters (out of season hurricanes), or snowstorms/blizzards occur.
As for coming down with a cold, that's happened twice in 3 years. Each time I took what amounted to 2 mg per cold to fight back excess inflammation, then resumed my normal dosage - so another 4 mg. Both times I put off a planned .5mg reduction for two weeks, which resulted in taking an extra 7mg total per cold. No flares.
Once a fiscal quarter, I have a work day that will run 16-18 hours of sustained activity. I take 1mg extra on those days, so another 4 mg extra per annum. No flares.
I take my condition and my health very seriously. I am very conscious of the risks, including the risks of sustaining an injury because I'm not as mobile as I need to be. I'm now reliably down to 5.5mg daily without withdrawal pain and no flare in sight. I may try a reduction to 5mg if my blood tests next month still see my C-reactive as normal and my ESR approaching or within normal. And there I may very well sit for a good long while.
I appreciate that what works for me may not work for others. I have no co-morbidities, and none seem to be developing. Dexa scan shows no signs of osteopenia or osteoporosis. Blood pressure is normal. Glucose is normal. Liver functions normal. Kidney functions normal. EKG normal. Cholesterols normal. Lost the 7 pounds I had gained at higher doses once I reduced past 10mg. Had the cataracts done long before PMR showed up. No glaucoma.
So, no, I'm not the least bit worried about a few extra milligrams of pred to prevent larger problems. 1mg or less of prevention is worth skipping a flare.
I am ok with taking extra if required with rheumy approval...I wouldn't take it for a cold as it suppresses the immune system and I wouldn't want to risk increasing that suppression. In fact I am supposed to stop my dmard, which is effectively doing the same thing to the immune system, for colds. But people can do what they like...including watching the weather through the window at home or work. 😉
I wish I could do as I like. I'm in the US, and if I lose my job, I lose my health insurance, and my access to any and all doctor visits, tests, drugs and treatment. I'm not eligible for full retirement for another few years, and won't be eligible for Medicare for more than a year.
Not unless, of course, I become certifiably disabled.
I'm sorry, I didn't mean to play down your concerns and it was impolite of me to do so. I should have realized you were not doing this lightly. As for sitting and watching the weather through my window, well, that sounds like the most depressing prospect for my future. I'm actually struggling with a kind of claustrophobia in my new home because I can't just step outside and be in the world.
I need to be more cognisant of the fact that I can't really understand what it's like to be in another person's shoes, and more gentle and careful in what I say. Apologies.
I'm a New Yorker. I appreciate plain speaking, and engage in it myself with regularity, as I am sure you know by now.
And I appreciate it when someone offers me advice, or a different take on a situation than the one I express. To me, it's a sign of respect, care and regard for others.
As I said, what has worked for me might not work for others. But what I must say is that in the past few months, I been feeling more like my old self, able to walk the beach for a mile or more at a go, able to swim laps in our backyard pool (though not in the ocean yet), able to say up past 10 to enjoy time with my Dear One, and friends and family without paying a terrible price for it the next day. I can even walk up stairs again like a normal person.
We get better, slowly and carefully, sometimes with a step or two back, and in increments too slow to be appreciated on the day-to-day.
And I'm very glad for all the good will, good humor and good friends I've made on this site.
It does show how far along you are on the PMR/ GCA or other Chronic Illness pathway when you can judge and assess the difference between Extra Pain or a Flare.
They usually feel the same , and in the early days of treatment , especially as the memory of how bad the pain was before you were diagnosed or medicated is still raw in your mind. Any increase in your pain and symptoms then does cause anxiety and worry about whether you should up your dose or not straight away.
It is only when we have had the time to get used to things and adjust that we can assess what might have triggered the extra pain , and see if we can use other techniques to help hold off a flare being caused by it , and treat it without running for the Pred pill bottle.
Getting used to managing your pain is one of the hardest lessons we try to learn along the way , but it's definitely worth trying to learn as you taper.
Obviously , if it doesn't improve or gets worse over those few days you know it is no longer the " Flare that wasn't" and is the " Flare that needs nipping in the bud" and you still have time to take that increase in time to do its job .
I’m glad you were able to recover after a couple of days & l think many would have resorted to extra Pred because they felt so awful.
Travel is an ordeal l find, l get so stiff sitting in the car & that’s why we made the move to be nearer our son when the baby was on her way. It’s now just 12minutes up the road as appose to 1hr30mins but that pales into insignificance compared to a 24hours train journey.
I hope you travel better next time & the excitement of the new baby will give you a boost.
As both daughter and partner would prefer to be home in NS again and we have only just moved ourselves there's no way we will consider uprooting and going to Ontario at this time. The thought does sometimes flit through my brain, but it ain't gonna happen! Have just spent some time figuring out Skype. First of all I had to disable something called Skype for Business which was quite adamant that I needed a corporate log-in. Then I had to figure out how to enable the camera again - I disabled it when I bought the laptop. All done. Now to find out whether daughter can actually enable Skype at her end, depending what her device is. She's always been partial to Apple so I may have to spring for an Apple tablet just for this purpose.
FaceTime on the iPad is so easy & it’s mobile so you follow baby as they become more active.
One of our boys lives in France & they show us around the house when they’ve been decorating or improving & showing us the plants we’ve bought for them, so it actually makes you feel closer to them.
I have to say - probably the best thing about FB is Messenger and video calls with it! Much easier than Skype which has driven us up the wall with wanting to do an upgrade that then means you can't find anything and it happened almost every time we went to use it! It was good at first - but having to use it every 6 months to keep the money on the account became tiresome when we hadn't used it.
We'd only want it because it has video function. Phone calls very cheap, maybe even free (part of our package). But it may be sensible to consider i-pads and Facetime. We are, of course, not leaving the country with this project, all within Canadian borders.
My friend Skype's her daughter in Portugal and has found it really good. Learned to do if at 80. Her daughter walks round the small holding yoga retreat showing her all the changes. But it didn't suit when she lived out there for12vmonths... having sold house after her husband died. Sorry it was the Skype that was important. She used Samsung thing.
Most of people use applications which uses WiFI or digital network to make calls and it is free. Popular apps are VIber, Line and WhatsApp, but there are many others
Skype is available for most platforms. Other options are Viber or Line which is also available for both PC and smart phones. I am guessing that your daughter probably will use smart phone, never the less you can stick to laptop or/and tablet.
Thanks for posting this Heron. It’s true that sometimes our lives throw up things that we could so easily blame on our condition. I had an extremely busy May and after the last event I felt dreadful!! Headaches had started, I was hitting my brick wall a lot, shoulders were killing and I even had jaw ache!! I very nearly upped my pred but just decided to have a few days doing absolutely nothing!! I started to feel better so no increase. Even after all these years it is sometimes hard to regulate my life!!! 😊
It is hard to live away from your kids and I suppose it is just as hard for kids to be away from parents especially when grand kids come. Try to do your best, visit when you can and use social media as much as you can. It might pay to get smart phone, it makes communicating easier. One of the reason we moved to Japan was to be closer to my wife's parents and it was important (we thought) for our daughter to be with grand parents when she was younger. But life is not fair at all. Now my kids, which still live in states have kids of their own and we can's visit that often PMR or not. But we manage. Sometimes we visit, sometimes they come here and most often we get on one of the apps on smart phone and have video chat with them. Other times they send short video for us... You will find a way, I am sure. Enjoy your grand kid - they grow up sooo fast.
Thanks. Friends who use Skype, or similar, to communicate with family say it really is a good thing to be able to do. I met my grandparents for the first time when I was over five when we stayed with them after arriving in the UK from Kenya. A little over a year later I was sent to Canada to join my father who had found a place in Nova Scotia. I never saw my grandmother again.
This was really helpful Heron. Sometimes yes it’s better to wait and rest or gently exercise it’s so easy to panic- I know I have a tendency to do this. X
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