PMR symptoms minimal at 3mgpd :-) But... SORE Upper Ribs and Sternum - Ouch! What to do re. Pred dosage - One for the Aunties..? ;-)

[markbenjamin57]

Greetings All

Just a quick 'serious' query for a change (more Mirth to come later...)

First, the Good News: after a long Pred tapering journey I'm now down to 3 mgpd Pred and reducing cautiously with far less PMR Pain, stiffness and DF (Deathly Fatigue) as time goes on. Phew....!

But.... for a few weeks following a bout of the Flu, my main / worst symptoms are now 'sore' upper ribs and sternum - what appears to be Costochondritis symptoms (as PMRpro suggested a while back - thanks). A recent Chest x-ray was 'Normal - no action'.

My 64-Dollar Question(s): is the Costochondritis (inflammation of the Costal Cartilage) more likely to be a legacy of the Flu, or residual PMR inflammation still swirling around (or a bit of both)?

In either case, what would you Aunties / other Polymalingerers here advise in terms of my Pred dosage and tapering? I.e. would 'upping' the Pred a little be likely (or not) to control the rib-area inflammation? Or, given a near absence other PMR and steroid withdrawal symptoms (e.g. very little other muscle stiffness, pain / fatigue etc), just to sit-it out, stay on a plateau at 3mgpd Pred and wait for the Costowhatsit to settle down on its own?

Ideas / similar experiences / answers on a postcard please..?!

Many thanks all - wishing you an enjoyable weekend.

'Uncle' MB

[Hidden]

Hi Mark

It depends how bad the pain is. You could as you say sit-it out at 3mg for a week and see if anything changes. Then reassess the situation. If the pain is in the chest area and worse when you take a deep breath, look up the symptoms of pleurisy. It probably isn't, but worth a mention seeing that you had flu type symptoms.

I am sure your Aunties will be along soon to give good advice

Good luck

Pete

[markbenjamin57 in reply to Hidden]

Thanks 'Uncle' Pete

I hadn't considered pleurisy since the recent chest x-ray was clear and the symptoms seem to fit Costo... exactly. That said, I realise that the two can easily be confused..

Will wait on the Aunties - hope all's well with you in the meantime?

MB

[Hidden in reply to markbenjamin57]

Just an update.

I am still playing about trying to get down to 5mg from 5.5mg. it appears that each time I try the pains in shoulders came back, not as bad as when it all kicked off so I consulted my Dr who agreed to send me to see a Consultant Endocrinologist. Appointment is for 6th December. I will let you know the outcome

Keep smiling

Pete

[markbenjamin57 in reply to Hidden]

Pete, if it's any consolation, I took several months trying to reduce at about the same level 6-5 mgpd) without success. Eventually, things caught-up and I've managed to reduce at a faster rate recently.

As many of us know (from painful experience!), the Pred tapering process is far from reliable or predictable in terms of results (even with DSNS etc).

My rheumy seems not to support the idea of a synacthen test (see response to jinasc). But, hey-ho, they all seem to have differing views about these things!

Keep smiling too

[PMRpro Ambassador in reply to markbenjamin57]

You are feeling fine at a lower dose - so it would probably be a waste of time and resources. If you weren't bouncing around like a 2 year old it would be a different matter.

[markbenjamin57 in reply to PMRpro]

Yep, not bad considering. Last week I did do 3 days' physical work for my poorly sis - lawn raking, building bookcases, pressure washing driveways etc. Actually, didn't feel too wiped out in spite of it - only 'naturally' tired

[Hidden in reply to markbenjamin57]

Mark, yes I remember you saying that. It's tricky to decide weather to dwell for a while and then try again to reduce. It's the not knowing how long to dwell for, even when using the DSNS method. I'm sure you've got the T-shirt etc.....

Pete

[PMRpro Ambassador in reply to Hidden]

If you have ANY return of symptoms you don't reduce any further. Preferably you go back to the previous dose for a few weeks and then try again.

[Hidden in reply to PMRpro]

Got it in one, thanks PMRpro

[markbenjamin57 in reply to Hidden]

I think we all have Pete - a real matter of using judgement in tandem with intuition?!

[PMRpro Ambassador in reply to Hidden]

Shoulder pain is more suggestive of 5.5mg being your holding dose for PMR than your adrenals still being asleep.

[markbenjamin57 in reply to PMRpro]

No / very little shoulder pain at (now) 3 mgpd for a month or so. My intuition tells me that the adrenals are getting their act together, even if not 100% yet

[PMRpro Ambassador in reply to markbenjamin57]

Not you - Pete. Darn this forum and its bizarre nesting pattern...

[markbenjamin57 in reply to PMRpro]

Agree...

[markbenjamin57 in reply to PMRpro]

Ah, sorry, you were responding to Pete...! ;-/

[Hidden in reply to PMRpro]

Hi PMRpro, looks as though it best to state who we are replying to. So yes I am inclined to agree. If only we really knew !? 🤔

Pete 😉

[PMRpro Ambassador in reply to Hidden]

I know about it - just keep forgetting... Pred brain??????

As for the pred - experiment?????

[Hidden in reply to PMRpro]

To PMRpro - The strange thing is that sometimes the answer to someone ends up in the correct place, but often disappears a long way down the nest!

[markbenjamin57 in reply to Hidden]

To Whom it may Concern

Whatever you said, wherever you said it, and to whom you intended to address it (or otherwise): could you please just repeat your comments during the past 12 months so that I can keep up?

[Hidden in reply to markbenjamin57]

Ha Mark,

So you can keep up what?

I'm Pastit, so l can't keep up with anything.

Keep smiling 😄

[markbenjamin57 in reply to Hidden]

You too Pete

[HeronNS in reply to markbenjamin57]

🤣

[markbenjamin57 in reply to HeronNS]

Thanks Heron. Unfortunately, my PC / ancient Ms programme doesn't recognise your reply symbol - but I'm sure it's funny!

[HeronNS in reply to markbenjamin57]

A little emoticon rolling on its side laughing. I'm sure there's a string of letters for it, on the order of lol, but I don't know what it is.

[markbenjamin57 in reply to HeronNS]

Ah, thanks Heron!

[PMRpro Ambassador in reply to HeronNS]

ROFL??????

Though I doubt that is the code to create it...

emojipedia.org/rolling-on-t...

[HeronNS in reply to markbenjamin57]

LMFAO

[PMRpro Ambassador in reply to Hidden]

Which is why I called it bizarre. Drives me nuts - if I weren't already

[Hidden in reply to PMRpro]

ahha!!!! guilty but not charged!

only kidding

[DorsetLady PMRGCAuk volunteer]

Hi,

Is this the piccie for book cover?

Never had Costawhatsits, but would suggest that an increase for a few days, maybe a week wouldn’t do any harm, but might help. Alternatively if you don’t want to upset the Pred applecart you could try paracetamol they might help, and they’re fine to take with Pred first.

Lovely day here, off to see son & family in their holiday place for early ”Christmas lunch” as I shan’t be with them in frozen north this year!

[markbenjamin57 in reply to DorsetLady]

Hi DL. Maybe... (piccie, although it's a few years old!).

Thanks for the advice - as you say, I'd prefer not to go backwards on the Preds as it's been good progress recently (apart from the sore ribs). We'll see...

Enjoy your lunch!

[jinasc]

Mark

How long on Pred and what you on now...................?

Then look at Synacthen Test. Remember your adrenals were knocked out when on long-term pred and you also have to carry your blue steroid alert card for one year once you have stopped taking pred.

Depending on age and length of time (yes you do age whilst taking your pred) and also the length of time varies. Those glands can take a while to wake up and become fully functional.

Now whether this means, whilst they are 'waking up' (because they are an essential part of the TRIO (pituitary, hippocampus and adrenals) who control so many things, you feel not quite OK and are unable to distinguish miscellaneous aches and pains. Does that process of 'waking up' cause or not. It is sometimes a question of elimination.

I, with GCA, was 5 years older and on higher doses.........so when I was down to 3mg........I was referred to an Endocrinologist and had that test. It showed, much to my surprise that they were not only working but were fully functional which enabled me to come off the last 3mg quite quickly. I had seen my GP and then my Consultant because I thought I was fine, but everyone was reluctant to take those last steps. In fact it turned out that whilst I was waiting for the Endo appt, my local hospital managed to take part in the Tabul study, and my Consultant, being pro-active talked them into doing a US as an 'end' the study was to determine a use at the beginning for aid in diagnosis. It worked, GCA had gone into remission. But the Consultantn and GP still insisted I keep the Endo appt.

I then discovered, through talking with PMRpro and other people I respected, that the ACTH test is extremely useful when you are down to 7.5mg or below.

I now know three people who had either both (GCA&PMR ) or one of them and they had the test and are now on pred for life.

Worth thinking about?

[markbenjamin57 in reply to jinasc]

Hi jinasc, that's interesting, thanks

Dx PMR April 2015, GP started me on 30 mgpd(!). Reduced to 3mgpd 'snakes and ladders' style as of now. Recent GP / Rheumy consultation suggests synacthen test for adrenal suppression unlikely to be positive since I'm ok on small Pred dose.

Also, Rheumy says that (q.) 'interpreting the results of a short synacthen test would not be easy given that Mr B. has been on Preds for a long time'. Nor does he advise steroid sparing agents due to (q.) 'their significant side-effects including myelosuppression and a possible risk of cancer (with azathioprine)'. He goes on to say that (q). up to 5% of PMR patients remain on the Preds for up to 5 years, and Mr B. might be one of those who requires a longer course of treatment. So, a gentler reduction plan might be advisable.. etc'. Oh well..!

I agree with you about the various symptoms of PMR and Pred withdrawal can be similar - and confusing!

[PMRpro Ambassador in reply to markbenjamin57]

Obviously your rheumy isn't too up on endocrinology... That's exactly WHY you would do it.

OTOH - otherwise I'll let him have 10/10 for paying attention!!!!!

[markbenjamin57 in reply to PMRpro]

That's what I thought too (having learned so much here)!

[RheaV in reply to jinasc]

I'm from Canada, and I've never heard of the "Blue steroid alert card" that people seem to be carrying. May I ask what it is? And why do you need it? Maybe we have them here, but I've not heard of it. Thank you!

[jinasc in reply to RheaV]

It is a card, blue in colour although that is obvious. Which we are given (sometimes when they remember - but then we ask, which records your current dose..........then it you have an accident etc the paramedics/hospital know you are on pred and act accordingly. We have to carry it for one year after we stop using long term pred. This is a precaution and lets any medic know the who, how, why and how long.

That is the best way I can describe it.

We did design an alternative, take a look: pmr-gca-northeast.org.uk/in...

as the Blue one is not really fit for purpose, as you are nearly all some different medication at the same time, so we extended it so it contains all meds, date taken and who ordered it.

[RheaV in reply to jinasc]

Thanks for the quick reply. It makes sense. I've often wondered how the medics would know about my PMR if I wasn't conscious enough to tell them! I'll have to ask the pharmacist.

[PMRpro Ambassador in reply to RheaV]

I carry a card in my handbag, along with my phone with a list of my medications and a brief outline of my medical history. Not that it would do me the slightest good here - I doubt the ambulance drivers (and they ARE drivers with very minimal training) could read it. Hope the emergency doctor could...

[Soraya_PMR]

Was going to suggest paracetamol as an aid to diagnosis (prob won’t help if it’s PMR but might if summat else?) But DL beat me too it.

What about voltarol gel?

Or a hottle bottle or microwave warm thingy? They help a little for PMR pains for me, might also help you distinguish what the pain is.

Or my very favourite (small) glass of red wine? For vasodilator effects of course!

Good luck, hope you can clear this out without having to ascend the pred ladder again.

[markbenjamin57 in reply to Soraya_PMR]

Thanks Soraya, all good ideas!

[Routy in reply to Soraya_PMR]

Love your reply,hahaha..great sense of humour on this sight!!!!xxx

[bunnymom]

I struggled with ribcage pain when first diagnosed and after many Drs was finally determined to be arthritis issues with my back which were resolved with cortisone shots. Now rib pain is usually a tell tale sign of steroid withdrawal and will come and go. Heat packs do help. Have one on right now. This disease is one mystery after another isn't it?

[markbenjamin57 in reply to bunnymom]

Thanks bunnymom - couldn't agree more..

[PMRpro Ambassador]

One cause is overactivty with the arms - what have you been up to now you feel so much better? I don't want the sordid details though.

Did you know the peak age for the condition is 12-14? Doesn't say if that is mental or real age though.

webmd.com/pain-management/c...

But you really should get checked for cardiac stuff just in case - don't assume it is "just" because costochondritis isn't really that common in adults.

There are suggestions in the link for managing the pain - and they suggest you might have to pull out of the autumn internationals since that involves a contact sport...

[markbenjamin57 in reply to PMRpro]

Ha! Over-activity with the arms? - better not go there! ;-/

Ok, hands-up (see other reply re. recent physical work). My sis reckons that even at 60 and with PMR I'm fitter and stronger than the average 40 year-old. But then she would.... I pay her well

[PMRpro Ambassador in reply to markbenjamin57]

Yes - when I saw that I thought "ahha!!!!"

[markbenjamin57 in reply to PMRpro]

ok ok ok, so I still aspire to Superman status despite PMR. Must be the 12-year old in me....?

[markbenjamin57 in reply to PMRpro]

p.s. agree about checking the cardiac stuff...

About 15 years ago I had very similar rib pain - as if having been hit with a cricket bat. My GP dismissed it as 'nothing serious'. A week later I was admitted to Intensive Care with an MI (Heart attack). Fortunately, I made a 100% recovery, but without investigations into the cause, only to be confirmed until 6 months later when I had (private) angiography to get to the root of things, given my previous fitness. Cause? 1, possibly 2 MIs due to Viral Myocarditis - but heart (q) Pristine despite the MI (s). I was VERY fortunate to escape with no cardiac damage (or worse still, a sudden exit from this world...).

As for the Autumn Internationals...

[PMRpro Ambassador in reply to markbenjamin57]

What? Not on the team???????

[markbenjamin57 in reply to PMRpro]

You should know by now that I AM A TEAM ON MY OWN!!!

Anyway, I'm not into all the hugging and kissing on pitch (unless it's the Ladies Internationals - then it's ok)

[PMRpro Ambassador in reply to markbenjamin57]

The autumn internationals are rugby...

The difference between rugby and soccer? One is a game of 90 mins with 2 teams of 11 men on the field pretending they are injured. The other is 80 mins of 2 teams of 15 men pretending they AREN'T injured...

[markbenjamin57 in reply to PMRpro]

Ah, nice one! Is it true that Rugby games are played by blokes with funny-shaped b***s..?

[PMRpro Ambassador in reply to markbenjamin57]

Like this you mean?

🏉

[Hidden in reply to PMRpro]

That emojo thing looks like a beef burger on my screen

😵😨🤡

[markbenjamin57 in reply to PMRpro]

Back later...

[PMRpro Ambassador in reply to markbenjamin57]

What - hiding behing the sofa again?

[markbenjamin57 in reply to PMRpro]

No no no, PMRpro! (hey, that rhymed..)

At my ex-wife and mother-in law's place actually MENDING one - seriously.!

[PMRpro Ambassador in reply to markbenjamin57]

Then you wonder why you have sore ribs...

[markbenjamin57 in reply to PMRpro]

Whaadeverr....

[Janll]

Can’t help but think, flu, over activity and muscle weakness from PMR and pred. I think, *rest, a little wine and repeat * for a week. Wouldn’t hurt to have cardio checked. Take care Mark. 😉

[markbenjamin57 in reply to Janll]

Thanks Jan, I can't argue with any of that!

[birdwatcher]

Dam, You Guys, and Gals impress me!! So much information and humor as well.

I love you all.

[markbenjamin57 in reply to birdwatcher]

Ah-ha, Ron! Nice to see you loitering around here (once again)

Hope all's good with you?

MB

[PiersC]

I have had the sternum pain/costalot for about 2 or 3 months - I then went on a weeks leave in Darwin where (for the first time in years) I did not take the laptop - did not do any work (other than simply moving - which in 40 degree heat and ultra high humidity was a task in itself) and the pain went away!! I was very happy with that I can tell you - but I cannot put it down to a particular reason - I was thinking the reduction of 'work stress' - and maybe even being in a large open air sauna and sweating buckets (I do not 'glow' or 'glisten' - I just pour sweat - sorry to the sensitive ones out in PMR land...)

And the follow up - back in Sydney - back to work - and I can feel the costa a' creepin back (damn !!!!)

[markbenjamin57 in reply to PiersC]

Thanks Piers, interesting to know that

On reflection, I might just have aggravated the costa.. inflammation when I did some 'serious' lawn raking last week. 2 hours using a 'sweep-across' style. I agree with you about heat - it seems to do the trick for me too.

And.... like you, I've always been able to get a healthy, dripping sweat on when doing vigorous exercise! As a kid, my parents were so concerned that they took me to the doc, who just said it was natural and nothing to worry about so long as I keep re-hydrated. Maybe that's why I / we (?) stay so slim?! I agree about stress too - it can have some quietly destructive side effects.

Greetings to you in Sydney - could do with some of that lovely heat as Winter settles in here. That said, it's still quite mild here - 15-18 degrees. Not bad for the UK in October!

Keep well, and in touch

[Slosh]

Markbenjamin57 - my daughter 36 suffers from Costochondritis - it is linked to Vit D3 deficiency.

[markbenjamin57 in reply to Slosh]

Thanks Slosh - that's useful to know

[sondya]

Got no answer, Mark. But nice to see you!