Just Discovered PMR and I Hate It: Live in... - PMRGCAuk

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Just Discovered PMR and I Hate It

OldGolfer
OldGolfer

Live in Spotsylvania Virginia USA. Age 76. Love to golf - obviously! I’ve been hurting all over for quite a while and felt very weak, no stamina. Mostly quit golf several months ago. Don’t think my GP believed my story so I went to Physical Therapist to see if I could regain some strength and stamina. After three sessions which got more painful by the day I told him something must be broken and I had to quit.

He thought he might have accidentally done something which caused the great increase in pain so he referred me to an orthopedist. Pain was mostly in the hip at that time so he took an X-ray, no breaks. He didn’t see anything wrong so he sent me for an MRI which showed severe inflammation at the hip/quadricep connection and a large bursa in the muscle and recommended an injection in the hip. At my followup there was very little improvement. He then suspected Lyme Disease, prescribed Prednisone 40 mg for 4 days, 20 mg for 4 days etc down to 10 then 5 then 1 down to 1/2 mg and referred me to a Rheumatologist. When I saw her she asked a few questions, looked at the blood work and said PMR.

I had no idea what that was but when she explained it all the pieces fell into place. She put me on 10mg but that didn’t do much. When I was on 40mg for 4 days from the orthopedist the pain completely disappeared. I felt better than I had in years so I don’t like the pain returning. On 10mg it continued to hurt so I switched to 15mg. That helped for two days but this morning it was terrible.

I have a lot to learn so I love this forum. Promise my next post won’t be this lengthy!

53 Replies
oldestnewest

Welcome!

I know Spotsylvania, we lived in Northern Virginia for a long time. I live in North Carolina near Raleigh now. So glad you found this site, it makes all the difference.

Best/fm

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

It sound as if 15mg may not be enough, perhaps you should consider upping to 20mg for a few days and see if that helps.

Have a look at this - it might help you understand your illness a bit better -healthunlocked.com/pmrgcauk...

OldGolfer
OldGolfer in reply to DorsetLady

Thank you so much for the link. I am a retired dentist so I like all the information I can get and your post quickly cleared up a lot of questions. I wanted to increase the dose to 20 but worried I might mess something up my doctor was looking for. Really interesting also that it can change so much in one day.

I’ll probably be on this site for the rest of my life now! Thank you again.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to OldGolfer

Please come back as much and as often as you like, or need to. There’s always someone about.

OldGolfer
OldGolfer in reply to DorsetLady

One thing I noticed in your post is that some think it could be brought on by stress. I didn’t notice any symptoms until a few months after the biggest stressful event in my life. We lived in Paradise CA until Nov 8, 2018, the day the entire town burned to the ground my wife and I and our dog and cat were some of the 58,000 who barely escaped by driving through literally black smoke and flames. We then lived in hotels for 6 weeks while we cleared up the insurance issues and decided to move to Virginia to be near our oldest son and his family. I think that counts as both physical and mental stress for sure!

I’ll be looking for more verification because the fire was caused by our utility company PG&E and a multi billion dollar lawsuits is in progress. We are supposed to document any “pain and suffering” issues in the next few weeks. I certainly hadn’t consider the possibility that PMR onset might be a possible factor.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to OldGolfer

That most definitely sounds like it could be the tipping point to your illness.

Stress certainly was a factor in my GCA.

SnazzyD
SnazzyD in reply to OldGolfer

Often the after effects of trauma have a delay and this forum is awash with tales of illness, high stress and trauma preceding PMR/GCA.

Most definitely - that will do it. What a horrible experience. So glad you are safe,

Thelmarina
Thelmarina in reply to OldGolfer

Terrifying. A car went into the back of mine and although I wasn’t hurt the resulting stress exacerbated my PMR symptoms and definitely counted in my insurance claim. I hope it’s the same for you. 🌺

Richnroo
Richnroo in reply to OldGolfer

Small world! I live just north of Paradise and we had the Carr fire here. Hope you get back to golfing!

Sounds like you need a higher dose in the PMR range as DL said, but not at GCA level (40mg) which is not needed and may confuse the picture.

PMRpro
PMRproAmbassador

And just to add - don't go back to normal activity just because you felt better!!! Pred manages - it doesn't cure anything!

ann55carol
ann55carol in reply to PMRpro

Will you please expand on the don’t go back to normal just because you feel better statement. I always try to do that and Then spend a day or more recovering. Not good but I so dislike not being able to do the things I like.

PMRpro
PMRproAmbassador in reply to ann55carol

Sounds as if you have answered it for yourself!

Pred only combats the inflammation and reduces the symptoms that result from it. It has no effect on the actual underlying autoimmune disorder that causes the inflammation and that chugs along in the background, attacking the body tissues of various sorts and making you feel as if you have flu. It leaves the muscles and other tissues intolerant of acute exercise and causing excessive post-exercise effects. You are not cured - you are still ill. If you reduce the amount you do at any one time and rest you will have a better quality of life overall.

Whether you dislike not being able to do what you have done in the past is immaterial - you can do it and permanently feel awful or you can learn to pace and have a far better quality of life:

healthunlocked.com/pmrgcauk......

In some ways I'm afraid it is a practice for getting older - one paper about PMR is called "I'd suddenly felt I'd aged"

core.ac.uk/download/pdf/302...

People always fight against resting - but well planned rest and recuperation will probably allow you far more hours of useful activity in the day. For example, an hour's rest at midday/early afternoon, taken before you crash, may well allow almost normal activities until late evening. And acceptance that there are things that aren't practicable at present will make you happier in the long run.

I bet 20 mgs does the trick for you. Sorry you’ve been lumbered with PMR especially as you are so fit and active. Welcome to the forum, we will try and help and support you, so the stages are as easy as possible. Just fire away as many questions as you need to.

Thank you all. I took another 5 mg this afternoon and feel better already. Straight to 20 on the morning.

It boggles the mind to think a forum of caring people presents so much more useful information than armies of experts. Guess we have more time to spend.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to OldGolfer

More time, yes ...but more importantly, experience at the sharp end definitely!😳

In my new experiences of this awful disease (diagnosed March 2019 and tried to come off pred too fast because of Covid. Then dreadful flair - tried 10mg,15, 17, 20 but still having some pain) The doctor put me on 30mg for 4days and that fixed it! I am now going to go sooooo slowly down. Maybe try 30 mg or even 40mg for 4 days?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Loyd

If 30mg cleared it, no need to go any higher- just means it will take longer to come down again. Maybe 30mg for another couple of days just to make sure - and then back down to, say 10mg or even 15mg if you feel a bit wobbly. then slow taper.

What dose were you on when you flared?

Loyd
Loyd in reply to DorsetLady

Thanks Dorset Lady. I won’t go any higher I just thought that Old Golfer might need to. The 4 days on 30mg really did the trick. I am on 26mg for a week then try 25mg. All good except legs don’t feel like there mine - is that a common side effect of Pred? I got down to 3mg but was flaring at 8mg - stupidly kept coming down because of fear of Covid.

Thanks for your reply.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Loyd

Sorry...misread last sentence! Thought it was a rhetorical question..duh.

Somebody else’s legs? - yes quite normal.

You might be able to taper a bit quicker down to 15mg, but do what you feel happy with.

Loyd
Loyd in reply to DorsetLady

I’m just a bit neurotic about getting another bad flair! I’m hoping to make it to 10mg and sit on that for a few months then try again. 🤞🤞🤞🤞

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Loyd

Good plan. Listen to your body rather than look at the calendar. Your body knows best!

Thrilled you have found this Forum and don’t lose hope! You will live to golf again I’m sure. You’ll get great advice here, especially about getting the starting dose to deal with your symptoms and then a nice long slow taper to get to a lower dosage that will still deal with the pain. It sounds as if you may need 20mg to start with before slowly tapering at 10% reduction at a time. Others will no doubt advise more fully. Good luck - you are most definitely not on your own! 🌺

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Thelmarina

Think you meant NOT in your own! 🤣😂🤣 least I hope so.

Yes spotted it! So much for messages of comfort and good cheer 😂👍

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Thelmarina

Well I KNEW what you meant.. case of brain and fingers not coordinated! I’m an expert at that 🤦🏻‍♀️

Expect a couple of years of dealing with PMR (Hopefully not more!). If you can be regularly scanned to see if inflammation is there or not, that would help. In my own experience, coming off Pred after 18 months, the pain continued but the inflammation went away after another 5 months.

The issue now is the muscles are ruined and need working on to get them back to normal. I could think I still have PMR, but I believe it is gone because I do get better at night now rather than worse. Now 26 months on from getting PMR.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Bignorhill

“I could think I still have PMR, but I believe it is gone because I do get better at night now rather than worse” - may suggest it’s still lurking. If it’s in remission there shouldn’t be any difference whatever time of day.

However, “the difference” (whatever that is?) could be your Adrenals still adjusting to life without Pred.

PMRpro
PMRproAmbassador in reply to Bignorhill

Prof Mackie has just shown a slide showing only half of HER patients are off pred in 2 years - 1 in 5 are still on pred at 5 years. Which is definitely in line with what we see on the forums ...

OldGolfer
OldGolfer in reply to PMRpro

Thank all of you for your encouragement. Going to try 20mg for a week. Next appointment with rheumatologist is in 10 days, should have pretty good feel for it by then.

You live in Spotsylvania and moved from Paradise.....?! I love American place names! Seriously tho’ you’re experience in the onset of this disease is not that uncommon - nor, sadly the time it took to get a correct diagnosis and on the right medication and treatment. I would definitely agree that your experience was stressful enough to bring on PMR. For a bit of context, I went straight to a rheumatologist as my GP was not experienced enough to recognise PMR. Initial 15mg/day proved not enough - 20mg did the trick. Go fo a VERY slow taper and do a lot less!

Best wishes for the ‘journey’!

OldGolfer
OldGolfer in reply to Rokerman

Just looked at your photo. We likely do have a lot in common. I fixed up a Miata with track suspension and other stuff. In California we did track days at Laguna Seca and Thunder Hill. Can’t do that again, can barely golf with PMR

Rokerman
Rokerman in reply to OldGolfer

Haha - maybe! I’ve tried my hand at golf - couldn’t hit a ball to save my life. (The only affinity I have with golf is that there’s a short course within the horse-racing course - Sandown Park - opposite me; since opening up after COVID lockdown, I’ve had all three cars plus my house roof damaged by golf balls..😡😡)

After PMR onset in 2016, I was seriously worried that I couldn’t drive properly again - felt I was sitting on my bones after 10mins, couldn’t turn my head properly etc. Fortunately, after a month on Pred that situation rectified itself - altho’ a 200mile drive without stopping is not as easy as it was; as Dorset Lady has pointed out tho’ - I’m 4yrs older!

My son lives near San Diego - he takes his car on track days - not (yet) Laguna Seca! My photo was taken by the very kind owner of the CanAm BRM - formerly driven by my all-time racing hero Pedro Rodriguez, when I visited Goodwood.

It appears that there is good advice below. I am convinced that doctors & others not aware of enough of the symptoms, as not only did my optometrist miss signs (late referral to opthamologist) but so did my GP. And he had diagnosed PMR the year before! So as a result, I am not blind in one eye. My rheumy says that she is planning to educate the medical field at some point, as too many mis-diagnoses. Anyway, as much as I loathe the drug, it is the only one apparently that can clear the inflammation. In my case, it will take much longer but with the addition of TCZ injections, perhaps it will move along. Yes, read responses you recd and don't think increasing to 20mg will be bad. I was on such HIGH doses, that it didn't like my body. :-) Have never been on any meds in my 78yrs, so perhaps that's why I was so affected.

Sorry.........mis-typed: I AM blind in one eye!!

Constance13
Constance13 in reply to jarn

We all got it! 💐

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to jarn

Sorry ....can’t use that excuse on here....quite a few of us in same situation 😉😂🤣😂

Welcome to Virginia OldGolfer and welcome to this site. I live in Virginia and our daughter and family live in Spotsylvania. My PMR journey began in October 2019. I too was very active. I'm a 67 yo woman. While on prednisone, I have taken up golf and pickle ball for the first time and have had very little difficulty but that was not the case when I was first diagnosed. It took a few months to get the inflammation down and not have pain (DOMS, delayed onset muscle symptoms), but that really has subsided for me. I wasn't very good about listening to my body's aches and pains and continued to taper when I shouldn't have. As a result I had to go back to almost my starting dose and begin my monthly taper all over again. I am sure with time you too will be able to get back to golf but don't try to taper too quickly. I am just so grateful that prednisone takes care of my pains and allows me to have a normal, active life. I hope the same holds true for you! I would also suggest a diet rich in protein and fresh vegetables.

OldGolfer
OldGolfer in reply to Whitner

Nice to find another Virginian! Thanks for the encouragement and advice. I am wondering why the main goal is to get off the medicine that lets me feel better than I have in years. Sure I’ll get some of those bad side effects eventually.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to OldGolfer

Because many doctors have this hate/hate relationship with Pred...not sure why really- all medication has side effects, and Pred is no worse than many others.

Plus, in general practice it’s more often used as a short term treatment - a couple of weeks only for things like asthma and COPD. They get in a panic when it needs to be prescribed long term!

PMRpro
PMRproAmbassador in reply to OldGolfer

It is the doctor's goal, because they have been indoctrinated that pred - at any dose and whatever the circumstances - is bad. In the early days they were so excited at the things it could do and "cure" that they threw it at everything and at the dose that they thought it needed. When I first worked in the NHS we used to say "if in doubt try steroids" - that was the 1970s, 20+ years in, the shine hadn't worn off yet.

Then after a few years the patients who had been given high doses for a long time started showing the downsides of this powerful drug. Some may have also been due to the underlying disease it was being used for but it was all mixed up together - and it still is. PMR itself can cause several of the things that doctors so quickly ascribe to pred - I know because I had PMR for 5 years without being on pred and I gained weight, was depressed, my hair went mad. I was inactive because I couldn't move - that is a major risk factor for osteoporosis - and I fell easily because of the disability due to pain and stiffness. Inactivty and weight gain are also risk factors for diabetes - combined with comfort eating on top.

And yes - pred speeds up the aging process in some ways - but then, so does PMR. And a study found that, apart from cataracts, there were no worse incidences of various so-called pred effects in patients on long term low dose pred for PMR than in an age-matched population who hadn't had pred or PMR:

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

Hello I've been on pred for 8 years for PMR up and down can't get the PMR to go away I needed 20mg to control symptoms at the beginning and it took the best part of a week for it to work properly. You need to up your dose. PS I have not had any side effects apart from a rounded face , watch out for weight gain you will need to be careful what you eat. Re golf it definitely makes your swing slower.

OldGolfer
OldGolfer in reply to paulst955

Very well timed response. I’m sticking with 20 until I see my Rheumy next week. This morning shoulders hurt some and legs are weak but not painful. Thanks to all the advice I’m not stressing about it. I’d love to try 25 but this is tolerable for now and I think I need the experience of “listening to my body” as I get into what will be a lifetime of PMR.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to OldGolfer

Best stick to 20mg methinks. You don’t want to go higher than necessary - just makes the tapering longer.

OldGolfer
OldGolfer in reply to DorsetLady

That’s the plan for now. I want to see what 20 feels like for a week or so. Thanks

Rokerman
Rokerman in reply to OldGolfer

O-G : Dorset Lady has a tapering plan - her adapted version of DSNS (Dead Slow Nearly Stop), it has served me well over the last couple of years.

OldGolfer
OldGolfer in reply to paulst955

Slower swing will help me, I transition too quick anyway.

RiverKings
RiverKings in reply to OldGolfer

As an avid golfer in Arizona, I can give you some advice on what worked for me. I’m 72. I was diagnosed in December fo 2018 and initially started on 40 mg Prednisone. (US doctors a bit more aggressive than UK it seems). I have just tapered to zero and hope I’m done for awhile. I have played golf the entire time, but found that I needed more warm up and stretching at a SLOW pace. I think the Prednisone affects balance somewhat, so that affects your swing too. Your handicap may go up, but it is great exercise and if you listen to your body, hopefully you can continue to play if your steroid level is quieting the inflammatory pain.

OldGolfer
OldGolfer in reply to RiverKings

Thanks for the advice. I do need the exercise so going to give it a shot this week. I’ve golfed twice since starting the Pred and really noticed the balance and stamina issues. 9 holes at a time for now.

RiverKings
RiverKings in reply to OldGolfer

Yes, I have played 18 about once a week for the last year. 9 is much easier and I even use a cart in our heat although I still try to walk and carry 9-10 clubs weather permitting. Good luck. I’m sure you’ll do fine and will appreciate golf all the more!

I am new to PMR and started on 15mg, this helped and pain was reduced greatly but my GP was not happy with the speed of reduction of my symptoms and increased my dosage to 20mg after 12 days. Now most of the day I feel good only have have aches for 3 hours in morning just before and after taking meds.

One thing I learned was that when you feel good you will be tempted to return to a normal routine, and be more active. I did this and found that the pain came running back . Rested for 3 day and the pain and stiffness was reduce to the level I had before I pushed my body. Been told to allow my body time to recover and build up slowly.

Update After Seeing Rheumy

She agreed with the 20mg advice and I have been doing fine with it. Still learning by experience what I can and cannot do. Actually slowing down feels pretty good - I am naturally hyperactive (on meds for ADHD). Maybe the Prednisone slowdown will help! My OH likes that idea by the way.

I really like rheumatologist. She is very unusual in that she accepts no insurance. I hesitated to call her but when I did her initial exam fee was reasonable and all future visits are $100. That’s not much more than my insurance copay and she welcomes phone calls for advice about tapering for no fee. Quick and easy access. I keep reading posts about diagnosis and treatment delays with NHS and think maybe free enterprise isn’t such a bad idea after all. Looks like we may be following the single payer model before too long and I’ll see how it goes. Very happy my Rheumy will stay private because it looks like I’ll be in this for quite a while!

Your advice and comments have been wonderful for me. My perspective on what this all means has improved immensely. I’ve reduced my expectations for quick resolution. This will all work out with time and patience. My wife and I are grateful for your help, thank you. I plan to stay with this group for the duration.

By the way the donation to the charity came to less than $20 US. The card worked perfectly and I encourage anyone to help out.

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