Struggling on Vacation
Posted , 6 users are following.
Originally started on 15mg prednisone in April 2016 and reduced to 10mg over several months. Had to increase to 15mg when I travelled to Italy on vacation from the U.S. last summer.
Then had an unrelated medical issue several months ago that forced me up to 20 where I was managing until last week.
Last week I ventured on my current vacation from the East Coast to the West Coast. It was a 6 hour plane trip with a 3 hour time difference.
I have been away a week now with another week to go and I'm struggling on 20mg. Feel very tired and unable to move around for any reasonable period of time without feeling like legs and pelvic region are totally seizing up on me.
Struggling with how to handle my situation since I want to enjoy my time away but am hesitiant to keep increasing my dosage beyond 20mg. Should I increase and, if so, by how much ?
Appreciate any and all suggestions.
0 likes, 7 replies
Sars77 rocketman42
Posted
Hi scotth42
I'm no expert, only 4 months in but having just this week gone up to 25mg from 15 / 20 I've just had an amazing 2 days of minimal pain & my energy levels are up up up! Just sharing my experience 😀
EileenH rocketman42
Posted
You cannot rely on the pred to keep you going when you are simply trying to do too much. The pred only relieves the inflammation that is the cause of the pain and stiffness in PMR. - the actual illness is still there and the rest of its effects must be managed by pacing and lifestyle changes. We do all want to still do the things we enjoy - but they have to be done differently. It isn't fair - but life isn't fair.
I have to say though - if what you have is supposed to be PMR I am concerned at you being left on 20mg for so long and still not managed. Are they SURE it is PMR?
Sars77 EileenH
Posted
Sorry to hijack post but that is an excellent point Eileen. I've cancelled 2 upcoming trips in order that I can mantain a stable routine & start reducing pred, now that I've found a manageable level of pred & activity. I've realised trying to keep up with everyone else while I'm away is having an awful effect on PMR, especially post break.
Scott in my brain fog I didn't take your post in properly, sounds like you need to take it a bit easier 😊
rocketman42 EileenH
Posted
Didn't think I was trying to do too much. It was "only" the traveling and time change.
Paced myself in all other ways and tried to have everything else arranged and done for me. In any case that is now water under the bridge and trying to figure out what to do now so as to manage it.
As to whether or not it's PMR. I had a classic presentation when I was diagnosed. The initial dose of 15mg of prednisone helped within 24 hours and I am seeing two rheumatologist's at the # 1 ranked hospital in the US for rheumatology.
If not PMR what else do you think should be ruled out ?
EileenH rocketman42
Posted
Travelling is stressful and however much you think you are pacing it is very very easy to overdo it!
I don't know what it might be, I don't know enough - but I do know people who have had "classic presentations" and have later been diagnosed with something else. Two have been ankylosing spondylitis and another "just" LORA, and that is a very typical change of mind. There are a few things that may have a "polymyalgic presentation" and sometimes the difference pred makes when you have had weeks or months of pain can appear miraculous when it perhaps wasn't as good as you thought. It's the fact you are needing so much now that is strange. There are possibly other reasons for that though.
gillian75478 rocketman42
Posted
Poor you. I really feel for you - having just had a flare whilst on holiday. It is so difficut as although one tries to pace oneself one doesn't want to upset other peoples holidays with health troubles and once the flare happens it isn't easily reversed. For you it is probably quite dfficult to just come home - I was lucky and in the end my husband brought me home. I increased my steroids whilst on holiday which gave me some relief - but I didn't have enough extra with me to last all week - something that I will make sure in future. I think I'd be reluctant to increase it beyond 20mgs without dicussing it with your Medical practitioner - means so much more to reduce!! Can you take pain relief in addition to give YOU some relief and wait till you're home to see if being home and doing nothing, helps.
?Meanwhile - try and enjoy the views and company of your holiday even if very restricted. A glass of wine may help or a good cup of tea! Hope to hear that going home helps eventually.
RD_Swede rocketman42
Posted
One of those who posts on this forum is Mrs K. She often "preaches" that you should clear the decks before you taper. That means that you should take it easy and not do unneccessary things. I think this is a very good advice. I myself started my 3 1/2 years with pred by flying from Sweden to the MN, USA (time difference 7 hours). I knew nothing about pmr as I got the diagnose the day before the trip and had no information except that "I should be glad that it is a disease where you can expect to be well after 1 - 1 1/2 years". I had practically no pain when I started but still, it took me 3 1/2 years. I waited a year on 5 mg and when I continued I used what is now called the DSNS method. The final months I was having fatigue and that kept me waiting for the next taper. I am writing this to tell that we all have different experiences but to clear the decks and taper slowly is very important for everybody.
Ragnar