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.
Hi jan 37704
Welcome to the PMR forum.
I have been off prednisolone for 11 months now and have been steadily getting back to normal after prednisolone therapy. There are lots of members on the forum who can give you lots of advice and information about PMR and prednisolone.....Your pain and stiffness should subside after a while give it a week or so and tiredness is part of the PMR/pred therapy.....and sleep patterns are disturbed due to our circadian rhythm that becomes out of rythm due to preds that suppress the adrenals and their effects on the hypothalmus.....my very best wishes to you jan37704....
Thanks so much, the problem with not sleeping is due to pain at present. Hopefully that eases as the prednisone takes effect. I have never been so sore and miserable.
Hi jan 37704
The pain will ease up just give it a little more time for the preds to take effect. You only started the 2 days ago, i recall my pain was controlled after a week or so.....best wishes jan37704..
Hi jan37704
Sorry should have mentioned 2 days of preds is a wee bit early for your sleep pattern to be affected by preds...i hope your pain subsides soon...best wishes..
Don't feel bad about not knowing what PMR is. I run into tons of people in the medical field who never heard of it. And in fact when I was in the emergency room after having a mini-stroke a nurse practitioner in training was in my room and I told him that I had PMR and he said "what neurologist made that up?" I told him I was diagnosed by a rheumatologist and then he insisted it was a made-up illness and just laughed and laughed as he walked out of the room. Because I had had a mini-stroke I couldn't talk very well and I had no feeling in my right arm either. If I had had feeling in my right arm and if I had been able to talk well I don't know if he would be alive today. Haha
Hi Jan, welcome to the club! You may need a higher dose - I went up to 20mg and it took a week to get the relief, - others went higher, so do persevere. Hope you feel less pain soon.
Welcome to the PMR club, I had a hard time sleeping at first it took me a good two weeks for the Pred to give me relief. Each case and every individual is different. I do not reduce my dosage unless I am PMR pain free. I want as normal life as I can. I am active, but had to work to get there. Taper slowly it is not a race to get off Pred even at times you might want to.
Try not to taper more than 10% at a time. And look into DSNS method:https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Good luck on your journey think positive and try to smile. 🙂
Just diagnosed last week...still waiting for relief. Started out on 20 mg ..no relief so Dr upped to 30 2 days ago. Still waiting but have confidence will get relief soon.
Hi,
Nice to see You in the Family of Prednisone. I suggest to read many opinions and you will build your.
Good Luck
CW
Hello Jan
Welcome to this great forum where you will continue get lots of support and information from a bunch of very informed members. Regarding sleep - anxiety is also probably robbing you of at least some of it - and possibly the impact of Pred if you aren't used to it. To help that I initially took a small dose (half or quarter of a 25mg tab) of doxylamine succinate - a sedative which has various brand names - but available over the counter here in OZ and just enough to assist sleep - worked for me well anyway - but check with your chemist or doctor as not recommended for long term. Also if the pain doesn't subside sufficiently as others have said you may need a higher dose of Pred- we have a variable individual uptake. I am also a Kiwi - but now a long time in OZ and I had also not heard of PMR or its relation GCA which I also have, But lots of us from Aotearoa originally descended from that Northern European gene pool which has been associated with this AI disease. 'Good' thing is most of us will recover in the end which is a better 'option' than many other illnesses !
All good wishes
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!
Thanks so much for support 😊
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
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.
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.
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
I had to go up to 20 mgs of pred too, before I got relief.
Hope it kicks in soon, for you. The difference will be spectacular.
Hi Michdonn
Received the book this morning and have been reading it all afternoon it's soo informative. I have been doing some things right regarding adrenal fatigue but the book has shown me where i am going wrong. I will certainly follow the book and make adjustments. Also regarding type 2 diabetes i shall make some adjustments there according to the book. I'm looking forward to reading about all the other conditions in the book. Thank you sooo much Michdonn for details about the book. I'l keep you posted as to how i am getting on.... with my very best wishes to you and your dear wife..keep smiling, keep positive, keep up the good eating regime..bon appetite...:-)
Hi Michdonn
Robot being illogical again!..It was just to thank you for your info in private message. Got the said article today and it has shown me where i am going wrong on certain eating habits re adrenal fatigue and Type 2 diabetes.....thank you soo much i will keep you posted ..my very best wishes to you and your dear wife..keep smiling, keep positive!..:-)