Posted , 17 users are following.
Hi, I am in New Zealand and was diagnoses 2 days ago with PMR. Wicked pain and stiffness and blood tests elevated. Started Prednisone 15mgs yesterday and had not a bad day but tired. Not a good night though and awake since 4am. I had not actually heard of PMR and I am a recently retired nurse and I did some research and found your discussion.
1 like, 22 replies
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brenda69464 jan_37704
Posted
Welcome to this forum !
Sorry to hear about your diagnosis. It can be a real pain! lol
I too am new to the site (I was diagnosed in August).
I found that I was tired in the early stages,but before I knew it my energy had picked up to the point where I am still learning how to pace myself . If I am not careful I can overdo it and then have a couple of " off " days. It is a learning process.
I had difficulty sleeping in the early stages. I now find that I generally only sleep for 7 hours and then I am raring to go. I think I was waking at about 4 am as it seemed to be the time my body was looking for the dosage of pred. I now wake between 6:30 and 7.
Stay in touch with us. Everyone is so helpful and encouraging !
Keep smiling and think positive ! Virtual hugs!
jan_37704 brenda69464
Posted
Thanks so much for support 😊
Kassiebeetle jan_37704
Posted
Hello Jan,
Yes, welcome to the forum. I live in Oz and Like you I am a nurse who had never heard of PMR till I was diagnosed. Don't be afraid to ask any questions at all. We have some fabulous contributors whose knowledge and advice
is outstanding. Take care and take it easy. Kath
sandy08116 jan_37704
Posted
Hi Jan. Bummer! I am in (west) Auckland and diagnosed with GCA last December. That's in remission but now slowly coming off prednisone. Hang in there. We've got a marvellous health care system and you should be well looked after.
Fingers crossed - PMR is a possibility but so far, no sign of it.
Keep smiling and in touch.
EileenH jan_37704
Posted
Welcome - have you found the "front page" where you will find this pinned thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The forum at healthunlocked has a few people from New Zealand if I remember rightly - maybe one lives near you.
I find I often wake about 4am - that is the time the body sheds the cytokines, the inflammatory substances that cause the symptoms we call PMR.
In that post I gave you the link for you will find the most recent guidelines for the management of PMR - and they suggest the use of "the lowest effective dose in the range 12.5-25mg/day". 15mg has been more standard for some years after previously also using more. One top rheumy told me last week she gives it up to 2 weeks for 15mg to work before adding 5mg. Some people just need more than others all the way through and there is no point giving 15mg and giving up immediately if the patient doesn't respond as expected. So while I hope 15mg works for you - if it doesn't, ask to try a bit more.
gillian82551 jan_37704
Posted
Hello Jan
I am amazed that thus so called common disease is not well known. I was initally told that it would last 2 years - unfortunately thuis is not always the case - I have had it 4 years. Everyone is different and we can't generalise - once the Pred kicks in you won't feel any pain. The tricky part comes later when you have to start reducing the dose.
I wish you luck.
Gill
mimi1950 jan_37704
Posted
Hope it kicks in soon, for you. The difference will be spectacular.