Tentative PMR diagnoses late August and started on 15mg Pred, then 20mg and a whopping 60mg short-term on specialist advice pending a hospital referral I have reduced Prednisone to 22.5 mg from 25mg over the past 10 days. Keen to get into the guideline range after being boosted up to 60mg when there wasn't total symptom control or reduction in inflammatory markers at 20mg. I take the prednisone with Omeprazole and milk in one dose somewhere around 2-4am during one of my wakings! Sleep is illusive. This timing means I am okay in the morning with limited stiffness or pain. My main symptoms are still fatigue overlaid with agitation/ busy mind. I'm used to being very active however physically that has changed dramatically. I try to pace myself and have let many activities go. In addition to the fatigue, I also feel very warm, sort of mild flulike symptoms and my face, hands, and feet burn...not unpleasant but staying hot seems important. Weight gain has not been an issue and I've lost the extra 5kg I had carried over the last few years by eliminating sugar and refined carbs. Mainly I focus on adding in lots of vegetables, protein and an extra dairy serve rather than the elimination. I don't have much appetite now and certainly not for the so-called treats after eating the days requirements. One bonus of PMR fir me. I have however moved back to red wine with dinner. Basically I'm pretty happy with how things are going if its possible to say that given the total life upheaval. I do recognize that I'm relatively fortunate too. I do seem to still be in an acute stage though in spite of diagnosis at the end of August 2018 and an attempt to reduce to 20mg this week seemed to increase my fatigue and sense of overwhelm, the burning sensation also the arm heaviness. The issue for me, and it's an enviable one, is that my son invited me out of the blue last week to accompany him on a short eight day cruise from Sydney to New Caledonia. He hasn't seen me since this diagnoses so he isn't quite sure what to expect! I accepted this offer! Who wouldn't? It involves flying to Sydney from New Zealand, two sea days, three island ports, two sea days and then flying home. I leave in four days. The "fun" component is that I didn't realise that he has us booked into the "dancetastic group" running alongside the usual cruise programme! Well, he is part of that programme and since I'm using the other bed in his cabin ( avoids his extra single supplement though he is paying for me). I'm expecting to be a spectator though there's a quiet hope that I can participate some. I figured if I need to spend time resting due to this illness and fatigue and steroid adjustment, I might as well do it on the high seas!! I'm committed now. Have taken out comprehensive medical insurance. Will take extra prednisone along in case of any morphine into GCA. My GP says thats unlikely. I figured it was wise to stay on the 22.5mg Pred. while I'm away and increase to 25mg if I need to. I'm wondering again about splitting the dose, to improve my sleep, I take Zophiclone several nights in the week just to catchup on sleep. Perhaos that experinebtation needs to wait until I'm back too I will have to adjust to changed routines...not just dance ones either. Hopefully it will work out. Excited and nervous as I said. It does mean being more patient with reducing though. Wish me luck. ..as if I'm not pretty lucky anyway.
An update and some excitement and anxiety about t... - PMRGCAuk
An update and some excitement and anxiety about the next couple of weeks
Wow, have a wonderful time, and keep us posted, or at least when you get home....keep well, I`m sure the adrenaline will help!....
What a wonderful son! I did a 7 day crossing from Southampton to New York and you’re right, a ship is restful and pleasant. I had to opt out of some things and take an afternoon nap to give me energy for the evenings. All in all though, it was the right kind of break with this illness. You do seem to be coping well I think this will give you a boost!
Thank you. I feel incredibly blessed that he even thought of inviting me. It was a last minute decision and quite stressful/exciting for me too. He is a really good competitive dancer and the 50 plus group of cruisers I'm slotted in with will be younger party animals. Oh, oh....it WILL be fun...spectating and dipping in as I am able. A special time with a son one of six adult children.
Hooray! go for it. What a wonderful son who loves him MOM!!! Dance when you can. Rest when you must. Be who you are!!! I'm sure someone will come along and give you advice re the time you are taking. As for me. I take the prednisone in the morning. After I wake up. And at 22 or 20 your sleep should start to adjust itself. Maybe keep your routine but change to a morning dose when you get back. and Have SO MUCH FUN!
Thank you. I feel incredibly blessed that he even thought of inviting me. It was a last minute decision and quite stressful/exciting for me too. He is a really good competitive dancer and the 50 plus group of cruisers I'm slotted in with will be younger party animals. Oh, oh....it WILL be fun...spectating and dipping in as I am able. A special time with a son one of six adult children.
Sibce you take your Pred in the morning, do you have several hours before you are flexible? I needed 5 or 6 hours after taking it to move easier which meant my mornings were a write-off? Perhaps that will be different now that inflammation build up may have gone?
I am fine in morning... actually better than on evening but then I always have been!
I started splitting my dose of 20mg early on: half with breakfast and half an hour or so before going to bed. We eat dinner rather late (usually 8:30-9:00 PM) so 10PM worked well. I'd have the evening dose with a desert of yogurt and fruit or frozen yogurt. I didn't have the sleep disturbances so many report, rarely had stomach troubles after I eliminated morning coffee and spicy foods, and didn't get the late afternoon/evening crash. Little pain/stiffness upon waking either. As I tapered, I dropped each dose evenly until I got down to the 12mg total dose mark. Then I started eliminating the morning dose by .5 mg. I'm down to 6mg now with no flares, (once I took total control of my taoer)and only a couple of steps back occasionally when anticipating a long tough day or bad weather. (I seem to be sensitive to big weather fronts moving through. For instance, when the remnants of Hurricane Michael roared over us, I didn't realize it would be here so soon and didn't up my dose. That was a really hard day. I took and extra .5 the next day, and the "crisis" was over.)
I love cruising. We go at least once a year out of New York or fly down to Florida, boarding a ship into the Caribbean or to Bermuda. If we do go into town, we almost always skip the ship "excursions", preferring to do our own research and make our own way to a recommended restaurant, beach or sight. The one off-board experience we never miss is the "private island" stop. It's always a really beautiful beach with fantastic water for swimming, and of course, a tiki-bar for taking a break from the sun.
I often skip the ports of call unless there's something special I want to see or do, preferring to remain on the ship virtually alone in the pool, the spa, or on deck. Hubby either wanders the ship and finds new friends among the crew, or he'll go along with new friends to enjoy the port. He also likes wandering on his own, taking photos to show me later.
Staying on board is a nice, quiet respite from the crowds (which one would think I'm used to being a New Yorker.) The dining room, the buffet and the bars are all quiet, too. I wear a bathing suit, a little silk dress pull over, and bring along my Kindle for entertainment. (I love my Kindle. No more packing a suitcase just for books!) This rest period allows me to enjoy the night life, seeing the shows and frequenting the piano bar sing-alongs, with strolls on deck watching the sea and the sky.
You'd think I get enough of "cruising" taking the ferry from Staten Island to and from Manhattan every day. But it never gets old.
Have a great time. Pay attention to how you feel, and don't worry about "disappointing" anyone if you decide to take it easy. Save your energy for the special things, and enjoy the opportunities for quiet time in lovely settings.
Hugely encouraging, thank you. I have only been in one previous cruise however I was anticipating treating this one much as you recommend. Also I am interested in how you managed your Pred. I have read your initial posts. I experimented earlier with splitting trying to get better 24 hour coverage and moved to the 2-3 am window because the Pred seemed to take about 5 hours to work. It gave me the ability to move better by 9am. When I wasn't responding as expected on 15mg I then became concerned that my splitting was a factor. Now nearly two months on I think that residual inflammation may have settled and it may work better. I also get that same sort of hand swelling (and toes) ...it's not major, just hot and puffy. I haven't (yet) experienced the Pred face, body changes. In fact, an unexpected bonus (aside from the gift of this cruise from a dance loving, mamma-loving son), is that all my clothes look great on this slender body Of course, the fatigued face needs more help! I think I will try the split dose tonight.
I do think timing is key, but you probably won't like my appointed hours. I'm up around 4:30AM and sleeping by 10:30-11PM. I've never been a world-champion sleeper. Not even as an infant, as my Mom often told me.
With few exceptions, I don't adjust my medications to local time when traveling, but then I don't adjust my sleeping times, either. And I eat when I'm hungry and drink when I'm dry, without looking at the clock. This has sometimes necessitated stocking some snacking materials in my room, since not everywhere is like New York, where you can always get what you want no matter the time or the day - even on holidays.
I hope you have a fantastic time. I wouldn't have turned it down either!
I didn't hesitate to say yes...some niggling feae since... but my goodness we need to limit what PMR wants to take from us and capitalise on what Pred offers. Balance.
Sounds like you are doing fairly well. I have PMR and started with 60mg of Prednisone and now am down to 2 mg. Still have flare ups occasionally but down to this level has allowed me to sleep well again. I do find that if I do too much during the day I due get fatigued easily and need a nap. Don't despair, just do what you can on this trip and know that you will start getting better.
Sounds wonderful- a cruise is just the medicine for this illness allows us to come and go as we please - enjoy!
How wonderful does that trip sound? Glad you jumped at the opportunity. PMR has a mind of its own, so as long as you listen to what it's saying you should be fine. Just be willing to say ,"I can't" to yourself and to others. Search here for the "spoons" story. Share it with your son if you think it will help him understand better what you might be experiencing. Encouragement to do more than is wise is very hard to resist.
If your insomnia is long standing, and no different under your current regimen, I don't understand why you would change your present regimen. If, it started with the onset of PMR but hasn't worsened since going on Pred, I'd recommend staying the course. Waking without stiffness and pain has been such a plus for me that I couldn't imagine playing around with dose timing. I also find that I'm much more likely to be regular with daily exercises if I do them first thing. I could not do that if I had to wait for breakfast and Pred to get started physically.
You don't say whether your problem is initial insomnia, intermittent sleep/awakening issues with difficulty falling back to sleep or early morning awakening with inability to fall back to sleep. Each of these is different and some harder to treat than others.
Then again, my inflammatory markers were way high when I started Pred. I noticed that by week two I was actually sleeping better on Pred than I had for a while before PMR and Pred. But, I felt the cytokine dumping and the pain that came along with it. That woke me up between 4 & 6 and I was unable to sleep after that. That's when I experimented taking some of my meds when you do in the middle of the night. Issue resolved. 5mgs was enough to control that problem and eliminate much of the early morning stiffness. At that stage I still took the rest of my meds at around 8am. It was after that my Rheumy put me on delayed release Pred. taken with a snack at 10pm. I was diagnosed 12/16. I'm currently on 4 just beginning to taper to 3 in a 52 day taper.
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