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New to site and need help with my Dad’s results Email 1 of 3

Lindsayf profile image
95 Replies

Hi all

My dad is 72 and still works at a computer for 8 hours a day in a stressful job. He doesn’t get up and move about during working hours! About 4 weeks ago, he started to get very sore in his arm muscles, arm joints and his thighs.

The pain was worse in the morning and he wasn't able to cross his arms in front of his chest as they were so tight and sore. He went to his GP and they took some bloods and then told him he has Polymyalgia Rheumatica.

In the last few days the pain has eased. He is getting up and moving more and also using heat to smooth the muscles. He is also going to see a physio.

Do these results look like he has PR? I have no confidence in his GP, but that is another long story!

Any help would be appreciated

There are 3 sheets and not able to add them all to this one.

95 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

HI,

I'm sorry but I cannot read anything - can you have a look and see if there are any results for following and then tell us what they are - they are most usual for diagnosing PMR -

C-Reactive Protein (CRP)

Erythrocyte Sedimentation Rate (ESR)

The symptoms you describe do sound very PMR-like , but are you saying they have resolved of their own accord without any medication (steroids/ Prednisolone)

You might like to read this which explains more about the illness -

healthunlocked.com/pmrgcauk...

But you do need to discuss with GP... if you don't have confidence with current one. can you speak to another in the practice?

Lindsayf profile image
Lindsayf in reply to DorsetLady

Hi

Not sure how to post the blood results without them being small :(

Serum C reactive protein level 43 mg/L range is (0.00 - 5.00mg/L)

Erythrocyte Sedimentation rate 42 mm/h range is (0.00 - 30.00mm/h)

The GP didn’t see him and left a voice mail. He said that he should take 3 x 5mcg of Steroids for a few weeks and then been weaned off them. My Dad is nervous of going on steroids and wanted to see if there were other options available like physio or supplements to help, however, the GP is rude and doesn’t like being questioned. He is the only GP in the practice as he owns it. I left many years ago but my Dad hasn’t.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

CRP is certainly too high, ESR is high, but not quite so much…

…and taking steroids for a few weeks (if it is PMR) is not going to work…it’s a long term situation - anything from 2years upward - but he wouldn’t be on 15mg all the time, that’s just the starting dose.

But if pains have receded then it may be something else, both CRP and ESR just show inflammation is higher than expected - but not what’s causing it.

Lindsayf profile image
Lindsayf in reply to DorsetLady

His arm pains have reduced in the last few days. The only other abnormal results are his Liver function test where the serum globulin is slight higher.

If he waits and doesn’t take the steroids, would the delay in starting them have any negative effect on his condition, if it is PR?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

If it is PMR then the inflammation will continue to accumulate (without Pred) -and you’re never sure how much damage that is causing to the body.

Lindsayf profile image
Lindsayf in reply to DorsetLady

it’s so difficult because how do you know it is PMR

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Well mainly symptoms (although those can be attributed to other diseases), for most people an increase in inflammation markers (although not everyone has them) and ruling out other things like rheumatoid arthritis, age (over 50) and how the patient reacts to the steroids.

It’s not easy..,which is why it takes lots of patients a long time to get a diagnosis.

Lindsayf profile image
Lindsayf in reply to DorsetLady

Okay, I see. This has been so helpful to talk to people. It’s weird that the stiffness in his arm muscles have now almost gone

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

See you said that ibuprofen has helped his arms -well it will help reduce inflammation on a short term basis, But it’s not recommended to use long term, and IF the inflammation is caused by PMR then in time it won’t continue to control it.

I know it took a long time to diagnose my GCA so I tried all sorts of painkillers/NSAIDs etc

Lindsayf profile image
Lindsayf in reply to DorsetLady

I suppose if he tried the steroids and the pain went then it may point to PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Doctors don’t like steroids, which is why his probably suggested 3 weeks -almost as a trial.

Think you need to try and persuade him to try them -but give it a week or two if he’s reticent. If the pains return, he might be pleased to try.

Lindsayf profile image
Lindsayf in reply to DorsetLady

yes, I’m going to sit him down tomorrow and have a chat with her. Also inform him of this risk of leaving it and it getting worse. Would he take all 3 tablets first thing in the morning?

Honestly, this website and people on here are a life saver. It feels so good to be able to discuss concerns

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Yes, that’s usual recommendation-with/after breakfast.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

It is a clinical (based on symptoms) diagnosis of exclusion (other possible things ruled out) - and from what I can see the GP has done the right sort of tests to rule most other things out. A prompt response to a moderate dose of pred is also significant.

From what I can tell it is a perfectly reasonable assumption.

PMRpro profile image
PMRproAmbassador

I'm sorry but I can't read the screen shot - when I increase the font size on my computer it is far too blurred to read.

PMR is not the disease - it is the name given to a set of symptoms and there are several different potential causes. About the only thing that is usually raised in the PMR we talk about here is the ESR/sed rate and the CRP, a protein produced in response to inflammation in the body.

Has the GP given him any medication?

You can't add images to the original post but you can add them in the replies - but unless you have some way of making them clearer there probably isn't much point.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Well at least you have a fighting chance to read them -me? - need a miracle 🧐

Lindsayf profile image
Lindsayf in reply to PMRpro

My Dad is worried about going on steroids unless he really needs them. He wanted to know if there were any other alternatives before steroids. He is nervous that he will never come off them and doesn’t know what this condition is. He is really upset and worried so I’m trying to get as much info to help him. I’ve just read about a good Vit D and K2 and Omega 3. I’ll find some vegan ones as I thought that was direct from the source as stronger then fish oil.

He was told to take 3 x 5mcg of steroids a day and then wean off them

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

If he has PMR then there is no alternative no. And supplements won't work - half the people on the forum have tried that. They may help mitigate the side effects of pred, they won't manage the PMR.

But a quick response to 15mg of pred taken as a single dose 1x daily would help clarify if it is the PMR we talk about here. I was able to move almost normally 6 hours after I took my first dose. How long he will need them is a how long is a piece of string question - but it is unlikely to be weeks - that weaning off pred business can take a long time because it doesn't cure the PMR, it manages the symptoms until the autoimmune part of the disorder burns out and he goes into remission.

Lindsayf profile image
Lindsayf in reply to PMRpro

okay thanks… I think it’s just not knowing if this is PMR or something else. His pain has reduced in the last few days compared to what is was

piglette profile image
piglette

The symptoms do sound like PMR, although there are other things it could be too. Polymyalgia does not really have a way to diagnose it. It is more discounting everything else. However normally a blood test of ESR and CRP inflammatory markers is done. I cannot read your image very well, are either of these items on there? The trouble is about 20% do not have increased markers which makes PMR even more difficult to diagnose. Did your dad’s doctor give him steroids to see if they helped the pain? They normally work like magic.

Lindsayf profile image
Lindsayf in reply to piglette

Serum C reactive protein level 43 mg/L range is (0.00 - 5.00mg/L)

Erythrocyte Sedimentation rate 42 mm/h range is (0.00 - 30.00mm/h)

Yes offered steroids at 3 x 5mcg daily then reducing them. He hasn’t started them but the pains have reduced over the last few days

piglette profile image
piglette in reply to Lindsayf

I could not wait to start the steroids, they really are a wonder drug. It will be interesting to see if they help. It is one way of checking for PMR. PMR tends not to be helped by any painkiller apart from steroids. Have painkillers helped your dad?

Lindsayf profile image
Lindsayf in reply to piglette

My Dad said the stiffness was helped by ibuprofen and the stiffness has reduced over the last few days to almost gone.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Well there is definitely something going on that fits with PMR. And untreated PMR is seven times more likely to turn to GCA, giant cell arteritis, a serious systemic vasculitis which can lead to irreversible loss of vision and strokes if not treated in a timely manner. PMR often responds to 15mg pred and the patient is able to reduce to a lower dose. GCA requires 40mg per day and often up to 60-80mg to avoid the loss of sight that happens in ore than 1 in 5 patients.

Lindsayf profile image
Lindsayf in reply to PMRpro

okay I’ll talk to him about this. I think because the stiffness has almost gone and the ibuprofen was helping, he doesn’t want to start on steroids.

Lindsayf profile image
Lindsayf in reply to PMRpro

how long would you be on 15mg of Pred for?

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Usually a month or so if it is enough to work, some people need 20mg. Then you taper slowly to find the lowest dose that is enough.

Had he had Covid at any point? But don't be lulled into a sense of false security - ibuprofen is really not a good drug for long term use. It can cause gastric bleeds and cardiovascular disorders. It does manage PMR pain for a very few people - but rarely.

Lindsayf profile image
Lindsayf in reply to PMRpro

Okay, I’m going to take to him tomorrow about this and the risks of not taking steroids if it is PMR. It’s overwhelming and he is a typical man who doesn’t want any fuss

piglette profile image
piglette in reply to Lindsayf

Why don’t you suggest he tries steroids for a week, if they don’t work he can just stop after a week only. In that case it probably is not PMR.

Lindsayf profile image
Lindsayf in reply to piglette

after an hours conversation with him tonight, he is starting his Pred tomorrow. He is also going to come over so I can show him this forum and go through some more things with him. His GP is going to call him in 2 weeks to see how he is getting on.

piglette profile image
piglette in reply to Lindsayf

That sounds great. Let us know how he gets on with the steroids.

Lindsayf profile image
Lindsayf in reply to PMRpro

no he hasn’t had covid

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Just wondered - post Covid can be very like PMR.

Is he also the typical man who's now saying he's recovered because he's scared of the treatment?

Lindsayf profile image
Lindsayf in reply to PMRpro

I’ve just spoken to him and explained what I have learnt tonight and the risk of not taking steroids if this is PMR. He is now going to start his Pred tomorrow morning. He is scared he will get fat and have high blood pressure but I said I would rather have a cubby face then have a stroke or blindness

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

If he cuts out refined carbs as much as he can then he may not put on weight, or even get the chubby face.…..as you say better than sight loss.

Although BP may rise on higher doses of Pred, they invariably return to normal levels as you reduce the steroids.

Lindsayf profile image
Lindsayf in reply to DorsetLady

He has a blood pressure machine at home so I’ve told him to check daily as they were worried about his BP a few months ago. I feel so much better now and more able to help support him through this.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Good….and remember there’s always someone on here to help -maybe also have a look through the FAQS on forum.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

It is even possible the raised BP could be due to PMR - not everybody gets the side effects with pred and most of them can be mitigated or avoided when you know how. I gained weight with PMR - didn't gain any more with pred and later lost it while still on pred by cutting carbs.

Lindsayf profile image
Lindsayf in reply to PMRpro

thanks you all so much… I appreciate everyone who has answered tonight. 😇

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Always someone about - maybe your dad will have a look? We do have a few men on the forum

Lindsayf profile image
Lindsayf in reply to PMRpro

I’ve printed out the information from Dorset Lady to show him and I’m going to show him this forum tomorrow. I feel really able to support him and help him because of help :)

yorkieme profile image
yorkieme in reply to Lindsayf

I could bore you to tears with my ups and downs over the last four years,the lessons learned,the valuable advice received etc' but I won't. What I will do is encourage you to get your father to spend time on this forum and learn for himself as to what PMR is,what it can do,how it can affect the life of those suffering with it and how to avoid some of the mistakes that I and others have made by taking the wrong route.

You have experienced the help and advice that is available on here but he needs to experience it for himself.

If it is PMR then one of the major issues to avoid is stress,there are others but to begin with he needs to get his head in the right place and you and this forum will help him achieve that. It will help him to see the reality of PMR, not the version that some of the medical professionals would have him believe.

I am a "typical," male by the way,but one who saw the light thanks to quite a few very kind females on here.😘

Lindsayf profile image
Lindsayf in reply to yorkieme

it’s lovely to hear this from a male’s view. My Dad is 72 and is stressed by his job that he is now looking to retire from. I’m seeing him tomorrow to show him this forum and how it works. I think he has taken a huge step as from tomorrow morning he is going to start his 15mg Pred. :) it’s lovely to know that people on here understand how it feels and can give some advice on the road ahead.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Tell him to be patient with the pred - 15mg is the bottom of the starting scale and he may either need a bit more or a bit longer than some doctors think. And we look forward to "meeting" him :)

Lindsayf profile image
Lindsayf in reply to PMRpro

yes he know this is a long and steady treatment and not a race. Does he need anymore blood tests done if he stays on the Pred?

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

His inflammatory markers may be useful - but symptoms are more reliable. He needs to be monitored at least 6 monthly with the basics but many of us have survived without! It is essential to keep an eye on Hba1c to see if steroid induced diabetes is rearing its head.

Lindsayf profile image
Lindsayf in reply to PMRpro

okay thank you. If he continues on the Preds then I’ll ask form his basic and Hba1c to be checked

HeronNS profile image
HeronNS in reply to Lindsayf

The doctor is the best person to ask about that as in my experience different physicians have different opinions about what is adequate monitoring. Personally I think it's a good idea to be checked every few months during the first year, and less often after that if all seems well. With my diagnosing doctor I started with every three months, eventually down to annually, but my current GP has suggested every six months, and that for a more complete panel, not just inflammation markers and any other thing that might need monitoring (in my case it was iron and blood sugar). Of course he may monitor all his older patients that closely if they have a chronic condition and I am significantly older than when I began this journey!

Alebeau profile image
Alebeau in reply to Lindsayf

Hi, I read all the replies and wanted to add mine, I am male also and love this forum.

I got PMR at 70 with both ESR and CRP in the 70's.

My initial pains never diminished until I took the prednisone and was reborn overnight.

Four years later the prednisone has not really had serious side effects for me.

PMR is nasty tho and you can't rush it out the door by reducing prednisone too quickly, if in fact your Dad has it.

Good luck.

Lindsayf profile image
Lindsayf in reply to Alebeau

thank you so much for you me comments. I feel of this is PMR then we will have help from this forum :) so pleased to hear you are pain free

yorkieme profile image
yorkieme in reply to Lindsayf

Two more things that I would add is that, a,) I went from being extremely active to someone who couldn't quite figure out why I couldn't carry on in the same fashion even on steroids. Yet again the message often repeated on here was that of being cautious but being a "typical male," I didn't do caution ................ until I really had to.

b,) I continued with my then diet and before I realised I had put on three stone,I have lost just over two of those but it would almost certainly have made more sense and caused less heartache for me if I had observed the dietary advice on here.

Honestly,if there was a mistake to be made then this typical male made it but it needn't be like that for your dad.Good luck to Dad,I am 71 yrs old by the way.

Lindsayf profile image
Lindsayf in reply to yorkieme

thank you for that…. I’ve told him to not push himself and if he feels tired then take a nap or rest. Go for gentle walks and listen to how your body is feeling. I have Hashimotos which is an autoimmune condition so now the importance of sleep and listening to how you feel. My dad probably doesn’t eat as much as he should so hopefully he will be okay. I know his body is run down as he currently has a cold sore and he gets them when he is tired.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Not just that - his immune system is in turmoil!

It isn't so much how MUCH you eat as WHAT you eat.

Lindsayf profile image
Lindsayf in reply to PMRpro

He is a vegetarian who never eats ready meals and always eats fresh. Doesn’t have a sweat tooth, hates chocolate etc. he eats lots of vegetables too

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

That is a good start at least.

Lindsayf profile image
Lindsayf in reply to PMRpro

he isn’t had his eyes tested for years. Should I book him and eye test or wait for few months?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Always good to get them tested, and free at his age. The eye test can pick up a lot of health issues...and with PMR, there is always a chance of GCA being involved.

Lindsayf profile image
Lindsayf in reply to DorsetLady

thank you I’ll get that booked. I’ll also tell them he may have PMR and is Pred. Would you then say annual if all okay

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Well I have mine checked every year -but I only have sight in left eye (lost right through late diagnosed GCA-long story!)

Pred can cause steroid induced cataracts so I imagine optometrist may suggest that anyway -but it is sensible to do.

Lindsayf profile image
Lindsayf in reply to DorsetLady

sorry to read that. I’ll get him booked in and see what they say

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Long time ago - when you're bored might like to read this - but don't scare you dad...I was very unlucky...

healthunlocked.com/pmrgcauk...

Lindsayf profile image
Lindsayf in reply to DorsetLady

thanks for that.. my dad has read your helpful booklet. He asked will the adrenals ever work again after being on Pred

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Yes-they will -might take a little while. I’ve been off Pred for over 6 years -and mine are absolutely fine…

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

It used to be advised that patients on pred should have their eyes checked once a year and it was free - then some years ago they stopped it and made free checks every 2 years. Now I think it depends on your optician in the UK. Pressures need to be checked as a baseline and then monitored as pred can increase the intraoccular pressure and that can lead to glaucoma if not managed. Really good idea to have a baseline pre or early pred to know if things are changing.

Lindsayf profile image
Lindsayf in reply to DorsetLady

so Dad has had his eyes tested and the optician was amazing. They knew and understood PMR and Dad is now on an emergency list which means that at any time he is worried or has any blurring, he can go straight to them without an appointment. They also said if they were shut to go straight to an and e.

Once question dad has asked is, do steroids weaken the immune system? Also, he said he has noticed such a difference since the steroids. He can even put his socks on easier.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Good news on optician/optometrist-they do understand the dangers of sight issues with PMR/GCA. Well done them.

Yes Pred does affect immune system - it “dampens it down” - that’s what’s gone awry in PMR -so your dad may find he’s likely to suffer from minor infections more than usual.. just part of it all unfortunately.

Good to hear meds are helping-but don’t let him get too ambitious 😂🤣..underlyingillness is still there.

Hope he’s feeling better about the future.

Lindsayf profile image
Lindsayf in reply to DorsetLady

thanks for that. He has got some vegan Omega and Vit D and K2 supplements. Is there anything he can do to help support his immune system. Would a supplement like L-lysine help him?

Yes, I’ve told him to take it easy and listen to his body.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Why L-lysine?

mountsinai.org/health-libra....

But a good diet is always preferable to any supplements - the body likes the natural stuff better.

Lindsayf profile image
Lindsayf in reply to PMRpro

I thought I read that it may help fight off viruses.

He has had his 2 first jabs but not sure about the others

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

The cold sore virus, not so much others. If he's really worried - get him some FFP2 masks and encourage him to wear them to reduce the risk of infection and also to try to avoid crowded situations. I have not had Covid yet - as far as I know at least, nothing bad enough to cause recognisable symptoms. I didn't have the backup of lockdown living here - no online shopping for food at all - so had to go out and mix and had I caught it and brought it home, my husband would probably have died much sooner. I have consistently worn an FFP2 mask and still do on trains and in most shops - and I have had all 5 of the jabs I am entitled to here so far,

Lindsayf profile image
Lindsayf in reply to PMRpro

he gets lip cold sores when he is run down and has one now. I’ll get him so of those masks to wear to protect him when he goes out shopping.

He has been on Pred 6 days now and just told me that his arms are still a tiny bit tight in the morning when he wakes up. Once he moves about the stiffness goes. I’ve told him to keep an eye on that. But all others tight and stiffness has done.

I also need to ask the GP for a red card as he hasn’t been given one.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

You can download a red card from the internet - the GP may well disclaim all knowledge! The link may be in the FAQs under the adrenal link.

Go to the chemist and ask for acyclovir cold sore cream. That will speed up the healing of the cold sore and I keep a tube in my bag (it is tiny!) and apply some at the first sign of tingling and a sore lip which usually prevents it going full blown. The generic is very cheap - some of the brands are a rip off!

Lindsayf profile image
Lindsayf in reply to PMRpro

thank you I’ll do that now.

Is there a recommended dose for the calcium?

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

1200mg/day in 2 divided doses - AdCal comes as tablets with 600mg calcium and 400 IU vit D. If you want to take an extra supplement, more vit D would be most useful. I take 4000 IU a day - 2000 IU is probably OK. There is a range of products, but the GP SHOULD offer it on prescription so always worth the try. They won't provide more vit D unless he is severely depleted but it isn't very expensive from H&B

Lindsayf profile image
Lindsayf in reply to PMRpro

thank you. He is going to call the GP on Tuesday and he has his private VIT D test to do so I’ll know what his levels are. Would he be on that dose for Adcal always or does it change?

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

No, it is standard. Some take less if their diet has a lot of calcium in it and some develop bladder problems if there is too much calcium - it can form grit which can cause the same sort of symptoms as urinary tract infections

Lindsayf profile image
Lindsayf in reply to PMRpro

okay thank you. I didn’t know if when reducing on Pred the calcium would also reduce

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Steroid card - see this from charity's webpage - and whilst you're on there, it might be an idea to join - either your dad or you on his behalf - it's only £15 a year - and good value... and they send you a steroid card each year...

(notice the sales pitch there😊)...

pmrgca.org.uk/steroid-emerg...

Lindsayf profile image
Lindsayf in reply to DorsetLady

I’ve signed him up and paid the members fee :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

Good girl... on lots of fronts..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Lindsayf

GP should have prescribed a VitD/Calcium supplement when he prescribed Pred -remind him next time your dad speaks to surgery.

PMRpro has addressed other questions ..

But do make sure he’s up to speed with covid vaccines. He’s not more likely to contract covid, but it could be more difficult for him to recover if he does.

Lindsayf profile image
Lindsayf in reply to DorsetLady

no, they didn’t give him anything else. I’ve ordered him a vit D test so we can get his base levels. I’ll also ask them for his calcium tablets!

Yes I’ll remind him if he hasn’t already had them.

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Pred suppresses immune system activity - so it suppresses the unwanted activities of the immune system but can also suppress the wanted activity. Personally I can't say I have had more colds or other infections while on pred though I have had problems with urinary tract infections though they were a problem pre-pred too.

Lindsayf profile image
Lindsayf in reply to PMRpro

okay thanks for that. He is a little worried about Covid but I’ve tried to tell him that it appears more like a cold now rather then the horrid strain in 2020 / 2021

PMRpro profile image
PMRproAmbassador in reply to Lindsayf

Only really if you have had your jabs - that is the biggest difference between then and now. That is why the Chinese are so concerned - their population isn't as well vaccinated as most western countries,

squashie profile image
squashie

I'm now 82, having had PMR for nearly 4 years. I managed to get Pred down to zero last year, but Covid kicked it back to life and I' m now very slowly coming down from 2mg and in no rush this time around. Pred took me from acting like an old man to getting back on the squash court (recently competed in the World Masters in Poland). In my case, I had no side effects, only complete relief.

Lindsayf profile image
Lindsayf in reply to squashie

I am very pleased to hear that you had no side effects and are pain free, may that continue :) very impressed with your squash abilities. It’s very nice to hear people good experience with Pred and how much this drug has helped them.

HeronNS profile image
HeronNS

This is a useful article. If you scroll down about halfway you'll find a subheading "differential diagnosis" which outlines some conditions which can cause PMR symptoms and should be ruled out before PMR is diagnosed - PMR is what's left after everything else is ruled out!

uptodate.com/contents/clini...

I, too, was concerned about steroids, but then I learned there was an enormous difference between the kind athletes illegally use to pump up their muscles and corticosteroids (like pred) which work to reduce inflammation in the body. The doses used for PMR are generally not harmful although there are some, usually very manageable, side effects particularly when starting out. The much lower maintenance dose we taper to has far fewer adverse effects while still working to control the pain caused by PMR inflammation. I agree that a trial of pred would be very useful, and most useful if it's found that the initial 15 mg works that he taper very slowly, starting after no less than a month at 15 mg, and not "off" asap as the doctor implies. The least amount of time he should anticipate being on pred would be about two years, although the median time of treatment is closer to six years.

Has your father had any other illness within the past few months, e.g. covid? Some people have developed PMR as a long covid symptom, and other viral infections can do the same. Some of these cases seem to resolve more quickly than the average, judging from comments I've seen in this forum.

Lindsayf profile image
Lindsayf in reply to HeronNS

He had lots of bloods done, including a full blood count, Thyriod, Ferritin, Folate, B12 and he is having a Vit D test next week. The only other abnormal marker was under his liver test.

He hasn’t had Covid and has been healthy. The only thing that came up was slightly high blood pressure a few months ago but that’s gone back to normal. These stiffness issues came only a few weeks ago and was very sudden. Hopefully the start of Pred will tell us if they have helped ease the stiffness completely so would point even more to PMR.

Judyliz profile image
Judyliz

Hello Lindsayf, I think your dad's best asset is you. Your research, love for him, and the great concern you have shown will help him through the confusion of PMR.It might turn out not to be that, but I hope he and you stay on the forum at least until you are both sure of his progress.

Best wishes to you both.

Lindsayf profile image
Lindsayf in reply to Judyliz

agh thank you very much. I have always thought power is knowledge and by getting as much info as possible you can help ease worry. Yes we will be keeping on this forum :)

Telian profile image
Telian in reply to Lindsayf

I like the summary of Judylitz. Plus of course all of the advice from others.

No need to repeat. 🌺

Oaks6 profile image
Oaks6

I’m wondering if he takes statins ? I was affected quite badly after taking them for 5 years. I was getting sore arm and leg muscles and weakness.

Lindsayf profile image
Lindsayf in reply to Oaks6

Hi

No, he has never taken any medication including statins

HeartMe profile image
HeartMe

My PCP referred me to the Rheumatologist. I didn't have any of the classic blood markers for PMR but I did have the symptoms on both sides of my body which is typical. I suffered for over year because another PCP said it was just age. I already had arthritis. The Rheumatologist gave me a steroid injection plus RX for Prednisone. Within 24 hours I had immediate relief and 48 hours later my pain was gone. It's part of the diagnostic tool for PMR due to the quick relief response. Just want to make sure that you know how to reduce your Prednisone when it's time. Your adrenal glands stop producing after being on Prednisone for awhile. I am just finishing my dose reduction over a year's period. It takes awhile for your adrenals to function again, I've taken Prednisone a few different times with different side affects. I had no choice but to take it due to a flare of inflammation of my lungs for another unrelated condition. I do know if you have PMR you are at risk for GCA, which affects the eyes. You can look up the symptoms. My ophthalmologist said to call him if this ever occurs as it is an emergency situation. It should be treated in emergency and to tell them you have PMR. GCA is not always diagnosed properly at onset. Not trying to scare you but be your own advocate. GCA can cause blindness if not treated right away. Good luck and hope your Dad recovers soon.

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