PMRGCAuk

Good Day

Happy New Year. I am new to this site and find it very helpful as I feel very isolated here in Ontario Canada. I was diagnosed with PMR and started on prednisone 30 mg this past June. Had one month of prednisone euphoria and then reality set in and was having all kinds of bizarre symptoms that led to many tests to rule out other serious pathology. Have been tapering down on prednisone and presently take 15/17.5 mg switching every other day. I continue to have pain and burning in the shoulder girdle and hip region but no stiffness since the prednisone. My biggest problem is overwhelming fatigue. I can hardly do anything in a day and often have to rest most of the day. I am 57 and was working full time at a physical job up until August when the initial euphoria wore off. My GP and rheumatologist keep asking me if I’m ready to go back to work. I feel guilty when I say I can’t possibly see myself at work. I can barely manage much at home where I can control everything I do. Has anyone else not been able to return to work as their body works through the PMR. My GP implies I am young to have this but after reading people do get this at my age. I don’t look sick other than the moon face and some weight gain so hard for my kids and coworkers to understand my inability to do stuff. Any thoughts would be appreciated.

64 Replies
oldestnewest

Shame your GP wasn't up to date - the guidelines say "over 50" so your are well in the age range. It doesn't help when your doctors seem to be dissing you does it?

The pred doesn't affect the underlying disorder - an autoimmune problem where your immune system attacks your body by mistake and makes you feel as if you have flu, permanently. The pred just relieves the inflammation and relieves the pain and stiffness. The flu effect remains.

The fatigue part has to be managed separately by pacing. This is a link to a post with more links which try to explain it:

healthunlocked.com/pmrgcauk...

At a guess you are trying to carry on as normal - and it doesn't work I'm afraid.

9 likes
Reply

You guess right. What you said makes so much sense to how my body is responding or actually not responding as I want it to. I was just focused on the inflammation and not understanding PMR in its entirety. Thank you so much for your response and I will follow up on your link.

3 likes
Reply

Hello Friend,

Your story is familiar. I remember the staggering fatigue which literally stopped most of my activity, for months, leaving me home in bed or sitting on the couch, numbly staring at the tv.

The fatigue took months to level out, then returned with tapering prednisone. Sometimes returning full blown, other times, not as bad.

Shoulder pain and thorasic level back pain were indicators when my inflammation levels were not being managed during my taper. When I encountered stress or illness ( cold or virus) , the pain would return.

I learned from this forum, how to manage that issue. Brain fog and depression were also serious part of my PMR effects. I started using an antidepressant, which helped. The brain fog slowly got better on its own, although I still have difficulty with organization and follow-through.

I am retired, therefore work issues are not of concern...however, I do not think I could have worked in the first year of my PMR. It has only been in past 2-3 months that I have not needed to stop mid-day for a nap. Every day!

Friends and family did not understand, how I could be sick and look so well. Eventually, they came to see the true effect of the disorder, and the prednisone effects. After 4 years, most of them accept that I have an illness, even if they dont understand it

I was diagnosed with PMR in Oct. 2013. Today I am beginning a taper to 2.5 prednisone, hoping I am coming to the end of this PMR journey.

Best wishes this coming New Year!

Kind Regards, Jerri

15 likes
Reply

Thank you Jerri for sharing your ongoing journey with PMR. I am relating to so much of what you have been dealing with including the brain fog and depression. Strangely comforting to know you have experienced what I am experiencing in its infancy. I used to hope that if I got a good nights sleep that I would restore my energy for the next day - not so. It is like an ongoing flu.

I will try to reshape my thinking on the journey and not the race.

Again thank you for taking the time to reach out.

5 likes
Reply

Karegodd, I think you nailed an apt descriptor, with the phrase “ like an ongoing flu”.

You are also correct about a full nights sleep not giving you energy the next day.

In fact, that you are able to sleep all night is a major blessing, since it seems many PMR folks have sleep-less nights, deviled with pretty severe sweats and night time leg pains. The end result is that quality sleep can be elusive and non-restorative.

All in all, you are coming to a fairly accurate understanding of PMR and its life impact.

As others have said, this is not a life-threatening disorder, but it is certainly life changing!

A word of encouragement...you will come through this experience and will be OK. Just continue to educate yourself by reading the archives of this forum, and be prepared to advocate your needs to your doctors❣️

Most of the fearsome tales about prednisone side effects have been debunked, at least at the small levels most of us end up using over the long run.

Cheers and Happy New Year, Jerri

4 likes
Reply

Hi Jerri.

I have to give PMRpro credit for the flu like reference.

I might have been generous with the full night sleep. I actually can’t remember when I last slept through the night. The night sweats and heart palpitations seemed to have lessened significantly when I reduced the prednisone. I am encouraged by your hopeful words. I am trying to put it into perspective and recognize it as a wake up call by my body to change things and listen!

I am so glad I found this site. I have already learned so much. The medical sights I found were limiting and put PMR into a nice little box. There’s nothing like learning from the experience of those you are walking or have walked the journey before me.

Happy New Year to you! Mine will be quiet and I’m good with that. 😊

9 likes
Reply

Hello karegood. I am sorry that you are feeling so isolated and misunderstood, I am really glad you have found us. I know that deathly fatigue well. I give into it by resting after any burst of activity and put myself to bed every afternoon. Stress makes PMR so much worse so it really doesn’t help that your medics, never mind anyone else are ladling on the guilt. It astonishes me that anyone with PMR can hold down a job. I even gave up satisfying voluntary work where I had almost complete autonomy. I really feel for people on here who have no choice at all because of finances, it must be a nightmare! This disease is not for wimps. My non scientific observation purely from being on this forum is that it tends to strike high achievers who expect a great deal from themselves, people who care for others selflessly and people who have been put under unendurable stress for a sustained period. Also people who have lost someone very precious to them.

Your doctor is wrong about your age being young for this disease, I would say that 57 is slap bang in the middle of average. We are all disadvantaged in a way for not looking as ill as we feel, but it’s a good job really, it would be like the night of the living dead.

I am concerned that you are so symptomatic on your regime of 15mgs alternating with 17.5mgs. I would be inclined to stop tapering for a while and then creep down at about 0.5 a month when you feel stable. At least 70% of your symptoms should be controlled by Pred.

Let us know how you progress. Best wishes Jane x

10 likes
Reply

SJ has prompted me - I don't think alternating 15 and 17.5mgs is helping. Tell your doctor you would like 1mg tablets. And are you using enteric coated pred? If so - there are 1mg tablets and if you mix enteric coated and ordinary it reduces the effect.

2 likes
Reply

The alternating was the regime given to me by my rheumatologist. I am not taking enteric coated prednisone. I will talk to him on Tues about 1 mg tablets. Are the 1 mg tablets the only ones that are enteric coated? I am interested in what you have to say as I am getting heartburn symptoms despite taking Zantac daily.

Thanks PMRpro

Reply

Hello, I take enteric coated because my guts couldn’t take the plain, even with Ranitidine (Zantac). In the UK here they come in 5, 2.5 and 1mg.

Reply

Thanks for your response. Good to know before my next rheumatologist visit. Yes my gut is talking back and I wasn’t aware of that option.

Reply

I agree the alternating regime is not helping you. I tried alternating just .5 mg during one of my tapers and even that seemed to confuse my body and I gave it up very quickly, reverting to the "dead slow nearly stop regime" I've otherwise followed. I wonder if eating a small helping of plain yoghurt when you have your pred would help? A lot of people find yoghurt seems to protect the stomach quite well.

Reply

I will definitely try the yogurt. The alternating regime is something my rheumatologist seems to like but it doesn’t seem to be working that great. I see him in a few days and will discuss getting 1 mg doses and also enteric coated. Then I can try a slower taper.

Thanks for your input and suggestion😊

1 like
Reply

Ah - you say prednisone, that probably means you are in the USA and having checked I see you are in Canada. In which case, no enteric coated pred I doubt. It is a very UK thing for some reason. You could ask your local pharmacy but I haven't come across it being used outside the UK.

Theoretically, the alternating regime should work OK to allow a lower overall dose. Unfortunately, in practice for many people it upsets the body when it has to adjust to different doses every day and creates a steroid withdrawal reaction each time you take the lower dose. This doesn't happen when you use a pill cutter and 1mg tablets to take the same dose every day.

And yes - for a lot of people taking their pred with a good normal fat content and unsweetened plain yogurt works really well. It is always worth a try - but try to avoid low fat and sweetened stuff! If you aren't keen on yogurt try Greek-style which is creamier with a different consistency and tastes quite different.

Heron is in Canada - she has crept down her doses with what is available. Stomach problems are another matter.

Reply

Thanks PMRpro. I took my pred this morning with Greek yogurt😊 so we shall see. Too bad Canada doesn’t have enteric coated pred but I’ll check for sure to see if maybe it’s on the horizon. The taper regime was alternating for 2 weeks then the lower dose for 2 weeks then drop another 2.5 mg and alternate and so on but as I get lower it doesn’t work as well and that might be the 10% rule coming in to play with the lower concentrations. So I think I need some 1 mg to have better control. We don’t seem to have 2.5 mg here in Canada because he had me cutting my 5 mg in half.

The steroid withdrawal makes sense. Seems to be too confusing for my body.

Thanks again and Happy New Year to you and family. I appreciate your knowledge.

1 like
Reply

Ask HeronNS but I'm pretty sure you can get 1mg tablets in Canada. There are doctors who have no idea what is really available to the patient. Even pharmacists may have to look it up!

These steps are big - and in the early stages of PMR you may simply be trying to go too low too fast. The pred hasn't cured anything, it is managing the symptoms and now you are looking for the lowest dose that gives the same result. But in the early days of PMR the underlying cause of the symptoms, an autoimmune disorder, may simply be more active and therefore cause more inflammation requiring more pred.

Reply

Thanks PMRpro. That fine balance is something that hopefully I will learn. There is always some pain and fatigue. My shoulders and shoulder girdle region and chest pain are my biggest barometer for pain. So do you go by blood work or how severe the pain and fatigue is to govern the tapering of pred?

Reply

I go by symptoms - I have no choice, my blood markers are always in "normal range" and don't vary much at all. But for anyone it is symptoms that are king - blood markers can lag behind or not even rise while on pred for anyone.

Reply

Thanks. Good to know. The body never lies so I will listen more to that.

Thanks again😊

Reply

In Nova Scotia I've only ever had 5 and 1 mg prednisone, haven't looked for anything else. I found cutting the 5 mg very handy during lower tapers which involved .5 mg down to 2.5. I matched the cut 5 with however many ones I needed. I think some people buy little capsules to put the pred into and these act to protect the stomach like enteric coated does. I never at any point dropped by more than 1 mg at a time, starting with highest dose of 15 mg. I accomplished the first reductions quite quickly, slowing down when I got to 10. Once I reached 8 mg I never dropped by more than .5 mg, although for a few months I was able to achieve a full mg reduction within a month or six weeks. Once I got to 3 mg I only tapered by .5 at a time, and sometimes it took several months and more than one try to accomplish. Have been on this journey for 2 1/2 years, with my lowest dose last spring, 1.5, but now attempting a taper to 3.5 from 4 after a difficult summer and fall.

Reply

Thanks HeronNS. I was told I could get 1 and 5 mg as well. It was good to hear your taper regime. I started at 30 and initially taper went ok but at 17.5 is where I’m finding I have to go slower. Might be due to Christmas and fighting a cold but it doesn’t really matter what the reason is, it just is what it is. I’m thinking if I can get some 1 mg then I can be more in charge of the tapering.

Thank you again. I really appreciate your input and everyone else’s input on this site

1 like
Reply

Good luck. Hopefully we'll all feel better in the Northern hemisphere as the sun returns....

Reply

Karegodd,

I believe that Rayos is available in Canada,but maybe not covered by the health plan. It is a delayed release formula that is taken with a snack at Ten PM and releases in the early morning before the cytokines dump that brings new inflammation. PMRPro once opined on this forum that she suspects it works much the same as the enteric coated Pred.

It made a world of difference in my sense of well being. I awoke without that morning stiffness and pain. It made working possible, tho at 76 I'm working part time.

Reply

Rayos. Thank you. I will research that. Didn’t think there were other options in Canada.

Wow still working. Good for you.

Reply

That's interesting pmrpro. When I have tried the off couple of days at 9mg...its 5mg coated 4mg Uncoated and I have had to stop and go to 10 when my thighs...my flare markers...start hurting. I will attempt to get coated 1mg.

1 like
Reply

Poopadoop

You might know, you can get 2.5mg coated too - in the UK, that is.

Happy New Year.

1 like
Reply

Which means it is possible to reduce 0.5mg at a time by combining 2.5 plus 1mg tablets as appropriate.

Reply

Thanks. I should know that. Lol I had 2.5 coated when first dx.

Happy New year.

Reply

Thanks Jane so much for your reply. Your non scientific observation nailed it- I have experienced all that you stated as common traits. I was wondering if I should slow down on the tapering. When I asked my rheumatologist if I should try and just push through the symptoms in trying to get the dosage down he said yes. I see him Jan. 2nd. So I will slow down and stay on the 17.5 and discuss with him.

Seeing how others have been affected by fatigue makes me feel less guilty for not being ‘productive’ and resting. It really comes down to I have no other choice but to rest. My body seems to be calling the shots and I can’t override it.

Thank you again.

5 likes
Reply

Greetings karegodd :-)

Thanks for your Post. It's always good to have reports from 'Newbies' here - albeit in unwelcome circumstances.

I agree with you about what is possibly (?) the most horrible and debilitating aspect of the numerous symptoms of PMR and GCA. I.e. what I call the 'Dreaded DF' (Deathly Fatigue). From what I've learned from this forum, and from personal experience, this seems to be one of the most frequently reported challenges (or curses?!) for those of us who are plagued with PMR and / or CGA - and despite the supposedly 'magic' Preds to manage the worst of the other physical symptoms in the meantime.

And, yes: the Fatigue-associated symptoms of PMR and GCA can seriously impact on one's ability to carry-on with Life as Usual work-wise - despite what some medics might say.

Hope this helps and gives you some reassurance that you're not alone in coping with this Auto-Immune illness. You are in very good company here...

Best wishes, stay positive and keep us posted! :-)

MB :-)

3 likes
Reply

Lol yes I was putting way too much weight on the magic prednisone. I so appreciate the affirmation and positive feedback. I was baffled by the fatigue but now have a better understanding of its significant role in this auto-immune disease and hopefully won’t be so rocked by my next appointments with my rheumatologist and GP in January. I can see it will be a work in progress on pacing myself and putting my health first. Thanks for your support. I will work on framing a healthier mindset regarding the PMR.

Karen😊

3 likes
Reply

Hi karegodd,

Welcome.

Think many of us feel isolated at the beginning, you don’t know anyone else with the same illness, and most people, especially friends and family have no idea of what you are going through. Hopefully now you’ve found this site, you will not feel so alone.

Have a read through this link, it may help you understand your illness a little better, and perhaps explain it easier to your close ones. healthunlocked.com/pmrgcauk...

Don’t be pressurised into going back to work, but if you have to then you need to get your work colleagues on side, and speak to your HR team about reducing hours etc

Good luck

1 like
Reply

Thanks DorsetLady😊

I read your article and found it very informative. I will have to read it a few times to digest it. Lots of good info regarding tapering the prednisone, fatigue and the disease process.

I know I can’t return to work the way things are and if push comes to shove I will have to retire and learn to live on less. I will make that work. Health and quality of life are more important.

Thanks again and Happy New Year to you😊

3 likes
Reply

Dear one, Sooo Sorry to hear of your fatigue, pain and confusion. Fatigue took me out almost completely also. Life was totally altered. Getting out of bed and functioning a bit was a huge effort. NO stamina. Couldn't drive car due to pain in hips and lack of strength in quadracept muscles. My husband had to do almost everything for me, including helping me turn over in bed and get in and out of bed. You are NOT making this up. Can't imagine the stresses of considering having to go back to work at this stage of PMR. Now, for some hopeful news.....when the inflammation goes down, your fatigue and pain will subside little by little. Patience was not (is not) one of my virtues, making it very difficult to work with the excruciatingly slow process of tapering Pred. and not getting a 'flare up' You will want to avoid flare ups if at all possible. Changing my diet, by eliminating sugar and sugary stuff helped my progress, especially with joint pain. From my start of 60 mg. I am finally down to 4 mg. and taking tapers ever so slowly. May this New Year bring you healing, body wisdom, excellent medical care and peace. Blessings PMRJ

5 likes
Reply

Thanks PMRJ. Patience and tapering slowly seems to be key in this equation. As a newbie I was expecting to beat this quickly. Well guess what- I was wrong.

Comforting to hear how far you have come and makes me hopeful.

Thanks and a Happy New Year and I wish the same for you.

Reply

Ah, yes, me too thought that Mind over Matter could beat PMR quickly. Not so for many including me. Jan 15th it will begin 4 years of Pred. HOWEVER, with Physio therapy for my legs now and elimination of almost all sugars 'my life' is coming back. I hope to go hiking again in May in Big Sur California with hubby....even if I have to use stabilizers like a cane or trekking poles. Again New Year Blessings to you and your loved ones. PMRJ

Reply

I hope the hiking in May happens for you. I was a big time kayaker, hiker outdoor enthusiast and that is the carrot at the end of all this for me to be able to return to that lifestyle again.

You touched on eliminating sugars from your diet and so have others so I’m paying more attention to that. It has been a trigger for migraines in the past. Sometimes I can get away with it and sometimes I can’t. It may be something to be more strict about.

All the best to you and your family and to hiking in 2018 for you. 😊

Reply

Hi karegodd

I know exactly what you are talking about I was diagnosed last January and put on predesolne 15mg reducing down every 3 months till nothing was ok managed to get down to zero but to be honest pain started to creep in at about the 3mg level so I'm now back up to 15mg due to inflammation levels going up again.

Myself like you do a very physical job and also like doing dot projects but since the on set of this horrible disease I suffer so much fatigue I can't find the energy or motivation for either and also like yourself I'm a young 58 years old and wish I knew the answer to beating it when first diagnosed inflammation was 100%+++. Still looking for a solution.

2 likes
Reply

Thanks for sharing Jura 1959. The roller coaster on the pred must be hard. I’m thinking the quicker one realizes to go slow the better. It is hard not to lead a physical life when that was what I was use to in both work and play and probably you to I’m guessing.

Happy New Year and cheers to our health.

2 likes
Reply

I SO hear you! I'm consider myself a young 63 and was diagnosed in early December with PMR & GCA... the headaches and body aches were unbearable, but the continued fatigue is unrelenting. Just when I think it's safe to "go back in the water," and go a little out of my comfort zone of activities, I am back on the couch staring at the ceiling! I totally get that there are MANY other diseases that are far more serious and life debilitating; but for me, personally, I find this one particularly hideous! I don't look sick, there are times when I don't feel sick, friends and family see the same ol me and their expectations are set accordingly. It so sucks! I say LISTEN TO YOUR BODY. If you are not ready, you are not ready. Or perhaps you could go back part time and ease your way back into it. The important thing is to keep reading this Forum, as you will find it invaluable! The people here are warm, genuine and very informed... you'll feel better just knowing that there are lots of people who KNOW exactly what you are going through. Hang in there

3 likes
Reply

Mamaici1 please stare at a pretty picture instead of the ceiling! I pet my soft dog to reduce “stare time”.

I’m in NY, it’s freezing, a little snow. I forced myself to take a walk and then back to my apartment for a rest before my date. The ultra soft blanket helps! No, I don’t suck my thumb even though PMR may require that for comfort!

2 likes
Reply

Yeah.... what's up with the staring off into space???? I just totally space out... like I'm high, but not as much fun!

Reply

Maybe it’s your way to regroup. It’s such a shock to process this illness, staring may be all you can do for a period of time before engaging in other activities.

Sorry it’s not fun. I am enjoying my unproductive time. PMR has given me permission to stop being a whirling dervish! Happy and Healthy New Year.

1 like
Reply

Sounds meditative

Reply

Thanks mamaici1. What you say is so true and comforting. Friends mean well when they suggest cross country skiing or snowshoeing to help lift my spirits but the body says no right now plus it’s -29 C with the windchill feeling like -38C here in Northern Ontario, brrrrr.

So glad I found this site as people here understand and their advice is more reasonable as they get it.

Happy New Year!

Reply

Omg I am frozen thinking about that. 😨😨😨😨

Reply

Lol. Me too. Even my lab/golden retriever mix doesn’t want to go outside

1 like
Reply

I understand that in this rare event the entire country is frozen by a polar vortex!

1 like
Reply

Where in Ontario are you? I'm in Belleville--between Toronto and Kingston. I was diagnosed in July 2017, started Prednisone at 15 mg, and currently at 7 mg. I seem to be battling UTIs, weight loss (even on Pred!--it has always been a problem for me to gain weight), as well as fatigue. But fortunately on the pred I don't experience much pain--at this point anyway. I hope you have a good year in 2018!

Reply

Hi RheaV. I’m in Sudbury about 4 hours north of Toronto. Do you have a rheumatologist in Belleville or do you have to go to Toronto or Kingston? You seem to be doing well in your control of symptoms. That is so great.

Thanks for sharing and happy new year😊

Reply

I don't go to a rheumatologist. My nurse practitioner diagnosed me and she is letting me taper down the Prednisone as I see fit and as my monthly blood tests go, so I really appreciate what I read on this site. I have visited an internist who confirmed the diagnosis, but I this point I don't feel I need to see anyone else. He also believes in slow tapers, and told me when I get to 5 mg to stay there for 3 months. It's too bad you live so far away, else we could meet! Hope you experience a better 2018!

Reply

It sounds like you have a good fit with your nurse practitioner. I like your autonomy with your tapering program. I think that comes with experience and trial and error.

Too bad our province is so darn big. I use to go your way when one of my kids went to Queen’s university in Kingston but she’s now graduated and no longer in Kingston.

As I gain knowledge I actually look forward to 2018 as I start to understand pmr better and hopefully work with my body towards a better quality of life.

Happy New Year😊

1 like
Reply

Hi RheaV, my daughter lives in Belleville. She's a dietitian with Hastings Prince Edward Public Health. We visited shortly after Thanksgiving, and I walked in the lovely park along the river to keep up my 10,000 steps a day! There was a terrific windstorm one night though, broke branches.

Reply

The waterfront trail is a lovely trail to walk! And Belleville is a lovely city! Where do you live?

Reply

I live in Dartmouth, NS, a block from a much less lavish harbourfront trail!

Reply
1 like
Reply

Living there, you don't get to see your daughter often, I'm sure !

:-( All the best in the new Year!

Reply

Well, she's one of the many who had to leave to find work which made use of her education. Ironically my younger son spent two years driving a truck in Toronto, with his engineering degree fading in his pocket, and came back to NS to a good job, so I keep hoping the girl will come back someday. They've bought a house so I don't know.... Nice thing is the train goes through Belleville so although it takes a while (a day) the travel is very relaxing. No fussing with air.

1 like
Reply

I believe some of the fatigue is from the steroids alone. It causes a certain degree of muscle wasting. I asked my internest why is my BUN, always 24 (normal 10 - 20) & my creatinine always normal. I said, "Am I always dehydrated?" He said, "No, your catabolic."

Reply

Interesting. I will have to look into that. For me my ESR was normal but my CRP was and still is high but coming down.

Reply

The BUN test is done to see how well your kidneys are working. If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher.

Creatinine is a chemical waste molecule that is generated from muscle metabolism. I've been told that this is more specific to kidney impairment than the BUN. And fortunately that's been fine.

My internist checks these things about every 6 months.

Reply

Recently I read that the CRP was more sensitive for GCA than ESR.

emedicine.medscape.com/arti...

"The CRP is of hepatic origin, usually rises before ESR in most disease states, and is often elevated in GCA. It has higher sensitivity and specificity than ESR (98.6% and 75.7%, respectively) and is relatively unaffected by age, gender, and other hematologic parameters."

My ESR really lagged behind the CRP when I had a flair over the summer. I'm keeping the link to tell my Rheum to do the CRP if he's going to test the ESR.

Reply

Thank you Nanjean for both entries. I will read the link you gave me. Didn’t realize about the sensitivity and specificity of CRP compared to ESR and its link with GCA. GCA is always in the back of my mind. Migraines have been a part of my life since puberty and I have had pulmonary emboli. Intense headaches have been present every time I taper down on the pred and I plan to raise this with my rheumatologist.

Actually just checked my blood work. The ESR was also elevated initially but good now. For me creatinine was good. Don’t think BUN was checked.

Thanks for the information and the link.

Happy New Year. Cheers

1 like
Reply

It is a general thing - but there are still people for whom the ESR is the main indicator - and up to 20% of patients with GCA don't have raised ESR or CRP.

1 like
Reply

You may also like...