When starting Pred do joints improve at different... - PMRGCAuk

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When starting Pred do joints improve at different rates?

Bigbaldgit67 profile image
48 Replies

Early days - I only started first dose of Pred 4 days ago at 15mg (taking at around 2.30am).

I have seen welcome and noticeable improvement in my hips, legs and left shoulder but my right shoulder is being stubbornly painful.

I appreciate it is early in the process for me but is it common for joints to improve at differing rates like this?

I accept there could be a coincidental but different issue with the right shoulder which could confuse the picture but the way my symptoms came about leads me to this this is all PMR.

I have week-1 review with my GP on Thursday. Am I being too impatient or should I maybe push  for a larger dose of Pred?

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Bigbaldgit67 profile image
Bigbaldgit67
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48 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good to hear Pred is generally helping - could right shoulder be anything else -old injury or osteoarthritis maybe?

Maybe give it until you see GP -if rest of you has improved even more then you don’t really want to take more Pred than necessary.

If you think it could be something else then there are other things to help - topical gel or ordinary painkillers -but I wouldn’t be in too much of a rush to jump to conclusions.

PMR isn’t to blame for everything…

Seacat30 profile image
Seacat30

How long did you have PMR before diagnosis? I have a partly torn shoulder tendon which I guess happened while struggling to cope with the stiffness of PMR without pred.

Bigbaldgit67 profile image
Bigbaldgit67 in reply toSeacat30

My hips first started playing up around 3 months ago but I attributed this to my increase in walking after a minor heart issue in the Summer. Only when my upper legs and shoulders started hurting in November did I think there might be a connection and even then did not mention it to the doctors until late December. I felt that if I went to the GP with a collection of aches and pains all over my sorry carcass, they might just see a whinging old man and dismiss me with some patronising advice along the lines of “ stop drinking, get mor exercise and eat well blah blah blah” - oh me of little faith. With the recent pressures on the NHS and doctors being virtually impossible to see in person I suppose I delayed longer than I should.

It still hasn’t be formally diagnosed as my blood test markers don’t support it but the GP has conceded that with nothing else able to touch the pain, we should treat as PMR for the time being and see how the trial of Pred works. I have taken Narproxen, Amitryptiline and tons of co-codamol (30/500), none of which had any affect until Pred which seems to be improving things already.

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

That is a critical point for most doctors -and at least you appear to have one for who QOL is important. Personally I don't care which drug works to relieve my pain - they all have adverse effects so I'll take the one that works.

PMRpro profile image
PMRproAmbassador

Are you right handed? If so - bear in mind that using that joint will have an effect. But yes - it does depend on the amount of inflammation that needs to be cleared out and although they will chorus "PMR is bilateral" - it can be worse in one joint than its buddy on the other side and it will often have started in one place before it affected the other side. And it COULD be an add-on - some of the painful bits for me took a few months before I'd have said they were pain-free.

Bigbaldgit67 profile image
Bigbaldgit67 in reply toPMRpro

Thank you. This particular shoulder has been the most painful all along and I probably sleep on it without meaning to so it could be more inflamed. In my last post I signed off saying “slowly slowly catchy monkey” and hear I am whining after only 4 days. I suspect it will settle down. Although the other affected areas are undoubtedly improved, they are all still tender so I’ll aim to persuade the GP to carry on after the one-week trial is up and keep my fingers crossed.

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

Obviously something is happening with 15mg but it is a fairly low dose in the great scheme of things so is likely to take a bit longer!

piglette profile image
piglette

PMR affects your muscles not your joints, so you may find your shoulder is nothing to do with the PMR. If painkillers work it probably is not part of the PMR illness.

Bigbaldgit67 profile image
Bigbaldgit67

Maybe it is my inept interpretation of joint vs muscle. The type of pain and stiffness is the same on both sides but more severe on the right. I will seek a face to face with the GP if they will countenance such an old fashioned approach and seek his or her input. Painkillers certainly don’t work, nor did 2 bottles of wine 😭😭. Pred seems to be helping but at a slower rate in the right shoulder area.

Blearyeyed profile image
Blearyeyed in reply toBigbaldgit67

Yes, if it's your dominant arm and you sleep on that side as well it will take longer to show results.You will have built up higher inflammation in a joint that is more in use and suffered previous general wear and tear throughout you activity in the years before than one that hasn't . The joints you use most obviously have more damage from that use even if it didn't give you pain or get inflamed before. Just as those joints were more likely to suffer stiffness or pain after a long active day.

A runner , for example , is more likely to take longer to see a reduction in inflammation in the hips and may get rebound pain in the knees.

A person with RA or osteoarthritis may still have some low level pain even on steroids from the inflammation and other damage in the joints caused by these other conditions.

If you were a physical worker regularly doing repetitive work that intensively used the shoulder like house painting , plastering etc that can mean longer pain to the shoulder of the working arm and rebound or neuro pain in the elbow or wrist.

If you have had a previous injury to a joint , even decades before , the remaining weakness is still there after healing.

That joint will still become more inflamed and take longer to recover.

Bigbaldgit67 profile image
Bigbaldgit67 in reply toBlearyeyed

Thank you your comprehensive reply. It has given me some reassurance that things are broadly on track.

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

Surprised the wine didn't help! In my days pre-pred the only thing that helped at all was a glass or 2 of wine with dinner!

Bigbaldgit67 profile image
Bigbaldgit67 in reply toPMRpro

Happy to try again. Purely for research purposes……..🍷

In seriousness, it was the most stupid thing I have done during this. The wine knocked me out when I went to bed at 11pm, and I woke at 1.30am having slept, I presume, on my worst shoulder and was in more pain than ever. This was before I started on Pred and I’m not messing about now.

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

Mind you - I had 2 GLASSES ...

Bigbaldgit67 profile image
Bigbaldgit67 in reply toPMRpro

So did I. The bottles were both glass! 🤪

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

Oh ha .... ;)

tempusfugi profile image
tempusfugi in reply toPMRpro

You two just don't care do you? Ha!😀

PMRpro profile image
PMRproAmbassador in reply totempusfugi

Depends what you're talking about ;) Some things I care deeply about :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Prosecco, Italian ice cream and chocolate mousse spring to mind…😊… amongst many other things I’m sure.

Bigbaldgit67 profile image
Bigbaldgit67 in reply toDorsetLady

I’ve just had all that for breakfast!! Small world 😁

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

Glad to see you’re on same wavelength….😊

PMRpro profile image
PMRproAmbassador in reply toBigbaldgit67

I had prosecco for a late breakfast yesterday (someone's birthday). And a very creamy gateau amongst a LOT of other food, all homemade. No gelato though :(

Bigbaldgit67 profile image
Bigbaldgit67 in reply toPMRpro

😱😱😱😱

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

…what do mean yesterday? Thought it was your usual brekkie😊

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

If only ...

tempusfugi profile image
tempusfugi in reply toBigbaldgit67

Nice, healthy diet then. Btw, v pleased to hear that you are feeling somewhat better. Good luck with your telephone appt tomorrow.

Thelmarina profile image
Thelmarina in reply toBigbaldgit67

😂

ProcrastiBaker profile image
ProcrastiBaker in reply toBigbaldgit67

You still have a great sense of humor. Keep that going! I love it!!

Jayveedee profile image
Jayveedee in reply toBigbaldgit67

😂😂😂

cribbager profile image
cribbager

I had exactly the same problem. Tried physio with no success. I believe it was the PMR, it just took much longer to settle - everywhere else settled immediately I started on pred

Bigbaldgit67 profile image
Bigbaldgit67 in reply tocribbager

That’s very reassuring, thank you for replying.

MiloCollie profile image
MiloCollie

😂😂 my sorry carcass. 😂😂

Mewy profile image
Mewy

I started 15mg of Pred in Nov. 2022. It took approximately 3 weeks before some muscles around my joints improved. It seemed the large muscles improved the fastest. My NP left me on 15mg for another 4 weeks just to be safe. I am on 12.5mg now. As our experts here remind us, each experience of PNR can be different.

Hope things even out for you soon.

Bigbaldgit67 profile image
Bigbaldgit67 in reply toMewy

Thank you for taking the time to reply. I’m hoping GP will give me a period of stability before further changes start although understand the dose will need to reduce over time. I need some semblance of certainty before returning to work because I won’t get much sympathy if I get signed off a second time. Got my week-one review with the GP on Thursday (by phone 😫).

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

When you return to work, you need to ensure your LM, HR department and union rep (if you have one)are all aware of your diagnosis - it's covered by the Equality Act 2010 and they are required to provide extra assistance if required (don't play the macho card and assume you don't need some help) have a look at link from CAB -

citizensadvice.org.uk/work/...

Bigbaldgit67 profile image
Bigbaldgit67 in reply toDorsetLady

Thank you DL. I’m aware of the Equalities Act and it’s benefits for me as I (1) was a manager for many years and dealt with a lot of other staff’s health issues and (2) Have a long history of spinal problems/suregeries which led to me taking early retirement from HMRC at the age of 52 after 33 years service. The EA meant lots of adjustments were tried before the decision was made and I was actually treated well.

I’m now a home delivery driver which is a job I do by choice not obligation but I really enjoy it and hated sitting around at home (as I am doing now 😭). I’m fortunate enough not to have to rush back for money alone so will take as much time as my health needs as I know very well I will become a disciplinary target if I have repeated periods of absence. Ideally I’d like to get it right first time, but this is where the EA might force my employer to be reasonable with my return.

There aren’t really many adjustments that could be made to my current role that might be considered “reasonable”. It’s not possible to predict what I will be delivering until I load the van so impossible to avoid large/heavier items. If they offered me an “easy” job in the office or similar I would simply resign. What I like most about my job is the solitude once I start driving and being in an office full of numbskulls would not be for me (been there, done it, got the t-shirt).

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

Sorry if I'm telling my grandmother(or grandfather) how to suck eggs... but one never knows how much others know...if you see what I mean.

Fully understand your approach to current employment - and previous (employed by MoD for 30 years plus)..🙄

Bigbaldgit67 profile image
Bigbaldgit67 in reply toDorsetLady

All of your advice is much appreciated, thank you

I had PMR for 5 or 6 years before diagnosis, so I think I had lots of pain from compensating for one painful joint by using another that wasn't as painful, if you know what I mean, and putting extra stress on the one that was compensating! I was first put on a 20mg dose.

Pugchick profile image
Pugchick

A few tips that may help:

If you have to lie on your side, an extra pillow under your upper torso (ie leaving a gap to "slot" your shoulder into) will help take some pressure off the shoulder.

Walking your hands up a door frame can help to restore the loss of movement that occurs overnight. If you do it several times you should notice you get a bit higher up each time. If you can reach the top, it can help to do a gentle "hang" (keep feet on the floor but take a little weight through your arms)

A physio will be able to help as the shoulder is intrinsically pretty unstable. Normal muscle tone keeps it stable, but anything painful inhibits the stabilisers and this in turn will increase the pain. It can be hard to get back on track without help.

Might be worth Googling an image of shoulder anatomy. It is probably the bursae (esp subacromial) and tissue around biceps tendon that are most inflamed, and it may help you to picture how when these gum up they inhibit shoulder movement.

Bigbaldgit67 profile image
Bigbaldgit67

I will try the pillow suggestion later. I have no shortage of pillows, having initially attributed my shoulder pain to sleeping awkwardly and buying lots of alternative pillows to no avail!

Just started reading about the bursa and looking at diagrams of the pain effects and they do seem to match my situation.

Will continue reading this afternoon while watching the snooker.

Many thanks for your detailed reply.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

Don't push it too much though, you aren't sure how much is PMR and how much isn't!

Unfortunately I know much too much about shoulder issues...🤷‍♀️

Ruins67 profile image
Ruins67

I had PMR for quite some time before it was diagnosed. It was my osteopath who suggested to me what it was. . Once I googled the symptoms it all made sense. I started on 15 MG and to be honest it was nearly 2 weeks before, I really felt myself again. Whether that’s because I had it for so long or no, I don’t know. Some people simply feel better immediately and with others it takes some time.

christi48 profile image
christi48

Heat and topical analgesics help me. Personally, knowing what I know from reading this forum, I would avoid a higher dose of Pred. until you try every other option.

Bigbaldgit67 profile image
Bigbaldgit67

Thank you. The improvements are still coming and the right shoulder is even yielding to the force of Pred now , so I’m a happy albeit tired, boy. Still a way to go,I know, but very encouraged so far.

Speaking to GP today and hope to agree to maintain this dose for a while and review as and when needed, I certainly don’t feel andy desire or need to increase the dosage as I write this.

Only downside is that I having terrible trouble sleeping which seems so perverse as it’s now not the pain keeping me awake. I’m trying to find some boring podcasts to pummel me to sleep!

I have an electric blanket and when the right shoulder is out of it (ie very cold) it hurts more so may try the heat pad here and there when it is bad as I’m sure you are right about heat.

Thank you for replying 🙏

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

healthunlocked.com/pmrgcauk...

just one if the downsides of Pred…..

Bigbaldgit67 profile image
Bigbaldgit67

Thank you. The Matt Walker sleep podcast did it in the end although a little late. Not sure if it was the content or his voice 🤪. The problem is I forgot where I got to and might have to start them again!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBigbaldgit67

Join the club!

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