Hello from Canada..1st post..full disclosure I am a Retired Registered Nurse who up until three weeks ago had never had any exposure to this disease..I was diagnosed with PMR after some pretty impressive lab results. The disease came on very suddenly but I was already being treated for Psoriatic Arthritis.for the last 10 years with NSAIDS...and years of trying every DMARD available..Rheumy and I parted waves 2 years ago when he pushed for the Biologics..but because of significant family hx of various cancers I felt the risk was too great..so since then have really just followed GP's advice..doing ok until this hit..all classic symptoms neck,shoulders, hips...given 20mg prednisone..within days relief...now into third week and starting to feel twinges in old sites..rt shoukder...lt hip...am afraid 20 mg is not enough but also the plan is to start reduction within 2 weeks down to 15 mg then after 2 weeks anther reduction to 10 mg..and so on..never had a patient with PMR but can see now how disabling it is..so frightened of the Prednisone..have already gained 7 lbs..looking very bloated..Thankful to have found this site..hey just shows it can affect anyone..Im 69..and this is not how I planned to spend my retirement years..stay well everyone thx for allowing me to rant..best to all...
So many questions..re PMR: Hello from Canada..1st... - PMRGCAuk
So many questions..re PMR
Have you tried to carry on as you normally would after starting the pred? That might be the problem. PMR is a life changing disease and you need to give into it. Putting on weight is very normal, a lot of people go on to a low carb diet which helps. I find that eating the same amount as I did before means I put on weight. Whatever you do DON’T decrease if you have pain, PMR will win.
Thankyou Piglette..I appreciate the response and yes you're right I have been trying to do pretty much the same activities of daily living as before..Ok I'll admit Im pretty stubborn and often state loudly " I have no time for this"..it was my self motivating mantra but now am feeling pretty defeated...my Dr gets back from holiday next week so will have a chat...Again I just want to say that all of you are doing a great service by being a source of support and great information..sometimes I just have to remind myself its ok to be a patient and not the Nurse..appreciate all if you..
Hi Knitwit 2020! I've just been reading all your posts with interest. I'm like you in that I'm trying to do too much, trying to keep fit. I'm wondering why my pains are coming back when they should be gone and I should be starting a reduction! I'm impatient to get off the pred!
I suppose I'll have to get used to it.
Keep posting!
Hi Blossom20...yes I agree if you been fiercely independant all your life and have a "I dont have time for this " kind of attitude its so hard to admit you really are not doing well...I put off talking to my Dr for at least 4 weeks ..thinking it was just a flare up of the PsA but when it got to the point where I physically couldnt stand without pulling myself up on a chair or get out of bed without log rolling..I knew enough was enough...so after my labscame back... which were all three times normal..the dx came of PMR..shocked , confused, angry and scared summed up the next 24 hours...
So I promise myself now to be the patient not the nurse and to follow the Drs advice and the advice of all you great people.thanks so much
You'll probably get better advice on here than you will from your doctor. The first one being - for goodness sake don't try to reduce as you've been advised - you'll be in agony. Read the Mayo Clinic's advice on PMR - they say it has a median life of 5.9 years (get your doctor to read it too)!!!
Hi, and welcome
Please feel free to rant anytime...all part of the service 😂🤣😂
It does sound as if dose is not quite enough, but are you sure that because you suddenly felt better you tried to go back to normal life? Can’t do that I’m afraid - you need to learn to pace yourself, and indulge in some TLC!
Plan is much too quick, even if initial dose was enough, which it doesn’t sound as if it was.
Personal opinion plus proven way forward - at least a month on initial dose, sometimes 6 weeks to get the built up inflammation under control, before the new daily dump of inflammation hits again.
Then reduction of not more than 10% of current dose - so at 20mg that’s 2mg (although 2,5mg tablet available so that’s normal) - certainly NOT 5mg. same reduction again to 15mg, 12,5mg, 10mg IF possible - not always....as you can see reduction becomes more than 10%.
Every 3-4 weeks preferably, not every 2 - although that is quoted in many official tapers - but with the caveat that many doctors don’t read - “provided no flares and in consultation with patients wishes”.
Have a look at this, gives plenty more info - healthunlocked.com/pmrgcauk...
Thankyou so much DorsetLady...yes I have been doing a great deal of reasearch and see the need to go slow with decreasing doseage...Its neen my experience that a lot of
Dr 's often just go text book scenario and are not very patient specific...so perhaps I will suggest a slower decline..and as you say perhaps the initial 20mg is not enough to abate all symptoms...slowing down is also an option til I get a better handle on this..my pain meds which are pretty heavy duty Tramadol really don't touch this kind of pain...and one last complaint I'm terribly tired ..not sleeping well..so best to start taking it slower..thankyou again gor all the responses..gee I feel finally like I have a group of like minded friends..
Hi again,
Nothing touches the pain ..apart from Pred. Plus a lot of doctors seem to have a hate /hate relationship with steroids - they know you need to be on it, but want you off ASAP. That may work for some illnesses like asthma or COPD, but not for PMR.
Here’s another link to one doctor who much more open minded about long term Pred use - practicalpainmanagement.com...
Tramadol, in fact all pain killers, doesn't help PMR. The ONLY thing that will help is Prednisone.
Accommodating PMR is a skill - have a look at these links:
Hello and welcome knitwit2020. You are in the right place !
Thankyou SheffieldJane..I have felt so much better today in receiving these wonderful informative supportive messages , then, I have since being diagnosed ....thanks again everyone..
Welcome Knitwit2020 - you've already discovered one of the most beneficial factors in dealing with PMR by being part of a community who completely 'get it'. No lengthy explanations required, and plenty of advice and support from the 'been there, experienced that' brigade!
Apart from our dependence on Prednisolone to cope with symptoms which enables us to enjoy at least a liveable life (but gently does it..) the mental aspect plays a big part in how we feel and the dominant word is Acceptance.
It's a cruel blow when your plans are turned on their head by this condition, most of us were pretty busy individuals used to working/caring and being under stress which seems to be a huge factor contributing to the onset of PMR, but you have the power to take control of some aspects such as diet (low carb really helps the bloating, the Diet Doctor site is good for a start) and deciding to slow your pace, rest, take time to explore your inner resources - none of us is unchanged by our experience of PMR, but what emerges can be surprising and creative.
Bit of a lengthy homily, sorry ... it all feels very confusing at first, so much to take in, but read all you can so you can ask your doctor the right questions and gradually feel a measure of control over the things you can do to help yourself. Best of luck, and keep posting 
Hi Slowdown...thankyou so much for the words of encouragement and advice..it really is a bumpy road we're on...but having this forum and the ability to discuss with so many knowledgeable members is wonderful. Each one of us has a story to tell and we are so blessed to be able to gather here to learn from each other ...thankyou .
Hi there. I'm 62 and was diagnosed 15mths ago. I've done a lot of research regarding side effects of steroids and minimising them. Regarding the weight....much of the weight gain is as a result of steroids increasing your appetite and therefore eating more, some is of course linked to steroids altering the way you absorb and metabolize food and so altering your diet really helps address this. Eat lots of fresh fruit, veg, wholegrains, seeds, nuts, fish and white meat. Keep off sugar (cakes, biscuits, etc) high fat foods (pastries, fried foods, cakes, etc) and processed and takeaway foods. I started off on 40mg prednisolone and I'm now down to 2.5mg after 15mths. I've gained only 2lbs in all of that time. Despite the extreme fatigue, I've made myself go for a walk every day and exercise at home too during lockdown. So....it isn't necessarily possible to prevent weight gain, but it's definitely possible to minimize it if you put the effort in. Hope that's helpful.
Hi Kendrew...Thankyou so much for the warm welcome and so much information..I am amazed at the level of knowledge everyone has and the willingness to share that infornation is remarkable..I feel I have a long journey to go but now I know I'm not alone...as a Nurse you feel like everyone expects you to just know everything about your dx but that is never the case..you may know a great deal about your speciality..mine was Toxicology and Occupational Diseases..but autoimmune diseases are a mystery to me..so I will gladly listen to the expert advice I hear in these messages and learn from the best..thankyou
Hello Knitwit2020, I have had PMR for 18 months and GCA for about 6. It is so overwhelming and I have reduced and flared and climbed back up again and restarted the taper. The people on this site have really given me support and hope. They never judge and always offer advice and knowledge in a straightforward but empathetic manner. I don’t know where I’d be without the help I have been given here. I am now on the biological path and it’s pretty scary, but at least I am feeling OK at the moment, down again to 7mgs but my CRP is “normal” for the first time. Stay with the group, you will find it such a comfort. All the very best on your journey.
Hello LemonZest11...thankyou so much for your kind words..I really feel like I have something concrete I can hold onto..here with this group...The first few days you're in such a brain fog ...but having others to talk to and learn from will be so comforting..thankyou again.
Hi knitwit2020,
So lovely to have you with us,everyone who is here are just so supportive and helpful.
Wecome
Hi Canarylady..thankyou for your warm welcome...Im so happy to have found a site that offers
insight, information and support. Thankyou.
Hi Knitwit, welcome to the club that no-one wants to join. Just wanted to mention that 4 years ago when I first started on Prednisolone I was given 30mg. I am a bigger lady and was quite fit at the time having been an exercise teacher. I found that I had 75% improvement within 24 hours. I was "lucky" in that in my professional life I had come across PMR so had a bit of knowledge. The rest I have gained from this site and Kate Gilbert's book.
I have been up and down with Prednisolone over the past 4 years and liken it to a long-term game of snakes and ladders
I've had a few flares when I have needed to go back up to 30mg but in the main have been able to hover under 10mg. It's not without side effects and in my case it's the moon face and weight gain.
I have been lucky to have good knowledgeable GP and Rheumatologist. They think I have another, undiagnosed, inflammatory condition in addition to PMR and also osteoarthritis. So like you I am on strong painkillers. These don't touch the PMR pain when I flare but do help the other stuff :).
I know how difficult psoriatic arthritis can be to control so I feel for you. You have two inflammatory conditions going on both of which can cause the deathly fatigue. I see others have advised you about taking things more easy now that you are taking Prednisolone and I agree wholeheartedly with that. I tried to just carry on but realised that I now need to be more in tune with my body and be a bit easier on myself.
Hope you feel you have found a place to rant, we all do from time to time. Be kind to yourself, treat yourself as if you were one of your patients and take each day as it comes xxx
Hi S4ndy...thankyou for the warm welcome and advice...I am beginning to understand this is a complicated disease and that the road to recovery is a long and bumpy one...I will continue do my research and listen to the great advice from this forum and the folks who "know" ....it's all so new and a bit scary...but hey baby steps...thankyou again..
Hi S4ndy I’m glad to hear of another that 30 mg seemed to be the good initial dose. That’s where I am. I’m only a little over a month into this disease and going from 30 to 20 seems to have been a bit much, as my symptoms returned with a vengeance, so I’ve gone back up To 25 to see if that’s enough to get things under control. So far it does seem to be Helping and fingers crossed I can keep it at 25. But I’m glad to hear of someone else that really needed 30 because that is just a little higher than what we hear. This is a great site.... so much information.
the 'get up and go' mentality together with 'I'll fight this' wont work, sadly. It was a hard lesson to learn. Someone on another forum described to the need to be 'A precious princess' which felt to be quite alien but was spot on!
What works for me (when I remember) is one unit output of energy = 2 units recovery.
Hi herdysheep..wow my inbox was so full this am ..thankyou so much for your support and advice..I feel I have just been embraced by a wonderful group of newvfriends..thankyou all.
Hello from another Canadian Knitwit. I've had PMR for over 6 years. I'm also a very stubborn person and it took a long time to accept the changes that had to be made in my life, sometimes I wonder if I'm still being stubborn. However, I manage well and accept that this may go on for a while yet.
You've received some great advice and links to information, the most important of which is don't rush it. Stay at the starting dose until things are under control and don't reduce more than 10% at a time. I was started at 20 mg, which had little effect and ended up at 40 mg. The reductions every two weeks set out for me resulted in a total relapse and I ended up back at 40 mg for a month. Finding this site was a life saver for me.
Hi Nuigini...thankyou so much for the kind words of advice...so nice to find another Canuck....eh !!😄
Will look forward to reading these posts everyday...
Welcome Knitwit! Slowly does it - it works!! All the very best. Keep in touch. 💐
Thankyou Jackoh...everyone is so welcoming..this will make this journey so much easier...
Good luck to you. I have gca, and recently been told pmr, and CIDP which is a doozy. I have been on steroids for a year. Had to recently go up to 30 mg after tapering down to 9mg. A specialist in UT southwestern In Dallas wants me to try methotrexate to help me get off these horrible steroids. Not sure about it but am going to try a dose or
Two.
Hi Dubler ...sorry I missed your post earlier...I've heard of CIDP..I'm so sorry, that is a nasty one for sure and then to have both PMR and GCA ..must be overwheming..
I wish you every success in your tx's...and as I am already learning .. just take each day as it comes and for all of us I really have always believed you must be an advocate for your own health...don't shy away from asking your Dr..questions..sharing information..and above all if your inner voice questions something speak up and eventually move to a second opinion if you feel its necessary...trust me the medical community respects patients who are well informed...and take charge in their self care.....take care....
Hi KW, my PMR diagnosis was in 2013. I've been up and down on steroids, and finally come to accept that my body is going to tell me when I am ready to taper to lower dose.
As one of our Forum Wise Ones advised me, early on...the goal is not to Hurriedly get off prednisone, but to use the pred to manage the inflammation.
So, as you can see, it's been a while, and although I have tried repeatedly to move toward zero prednisone, I remain at 5.5 mg. My weight has remained within 10 lbs of starting weight, I do not have diabetes, osteoporosis, or other "dreaded" side effects of prednisone.
My message to you... ...accept that Prednisone will allow you a reasonable quality of life, and hopefully allow you to avoid the devastation of GCA, .......so take the stuff...watch your carb intake, and learn to say "No" to people who want you to push you beyond your limit, (Be that children, boss, friends or spouse)
This disorder is not life threatening, but it is life changing...(someone else's words).
My advice, learn to accept the absolute need to pace yourself, eat healthy, take daily naps, learn to avoid stressful situations, and encourage toxic people to leave your life.
You will come out the other side of this disorder, but it will happen on your body's time line, and no one else's...including your doctor, your rheumatologist, or anyone else.
Keep in touch with the wise people on this forum....they can write the textbooks!
Kind regards, Jerri
Hi Purplecrow/ Jerri...Thankyou so much for sharing your helpful tips..yes I too am of the mindset that just because you read what the potential side effects are ...it doesnt mean you will become a statistic...
I admit the first few days were rough but I am really starting to take this all in my stride...last evening was especially bizarre with not being able to sleep..finally dosed off around 4 am ...slept til 9:30 had my meds and breakfast and back to bed until 12 noon...wow what a shock..but I did as advised and just accepted the fatique ..
Your words are so encouraging..thankyou again everyone...stay safe stay well...KW
Hi knitwit! I assume from your username you are a knitter. I too love to knit but I only knit and purl, I can’t do anything fancy. Crochet is where it’s at for me. I too am a registered nurse and got hit with this a little over a month ago. I had never heard of it either! We sound very much alike “ I don’t have time for this”. It’s very frustrating. I’ve found this forum to be the best thing for support and advice and continual reminders to slow down. Yep, I’m guilty of trying to carry on as normal as soon as the Pred kicked most of the symptoms to the curb. I’m learning quickly that’s just not going to work. I will be interested to follow along on your journey. Welcome!
Hello Richnroo...Thankyou for your reply and yes I think we are definitely kindred spirits...I'm an average knitter.. not too fancy either..got that nick name from husband who thinks any craft in my hands is knitting..but I also love crocheting and I do felt work and jewellery making..paint and sew...so as you said we crafty people have no time for this disease.!!!!
All those years of caring for others never prepared me to be the patient. I think we as professionals struggle with having perhaps too much general medical knowledge and here we are faced with an ailment we know nothing about...like you, we as RN's dealt with the typical autoimmune diseases that were hospitalized in an acute setting... but these were the typical ones...never even heard of PMR..
Going to keep learning and asking questions of this well informed group and continue to heed their wise advice..nice to meet you..take care...
I’m going to keep learning too! I can’t believe all these years I’ve never heard of this disease. And you’re right, despite decades of being a nurse, I’ve not prepared to be a patient. Prior to this I’ve had no issues so this is all new territory for me. Pleased to make your acquaintance!
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