Should I up my dose?

[Mervetheswerve]

On Wednesday I’m starting a four day bike ride called the King Alfred’s Way - a 350km off road ride in Wessex. I’m currently relatively symptom free but wonder if I should up my current 6mg of pred to, say, 8 to provide extra protection. Any advice appreciated. Thanks M

[PMRpro Ambassador]

"I’m currently relatively symptom free" - raises red flags to me. Are you really in the right dose for you?

Pred isn't a "protection" - I'm not really clear why you feel it is needed?

[Mervetheswerve in reply to PMRpro]

Do you mean “Red flag” in terms of I may be on too much pred? There was a discussion on here a few days ago about increasing doses ahead of big events-daughter’s marriage was one I think. So it made me wonder if increasing my dose would help to protect against the risk of a flare which on the ride. The current 6mg dosage seems to be working fine so perhaps I should just stay with that. Thanks.

[PMRpro Ambassador in reply to Mervetheswerve]

No - that you are not on enough to properly manage your symptoms. When someone says "relatively symptom-free" it usually turns out that they DO have symptoms but aren't willing to admit the fact.

I think the extra for the wedding was probably more on the grounds that there may not be the adrenal reserves to cope with the excitement of your daughter's wedding, for example, and was for a single day. The same of course may apply to you for the bike-ride - especially if it is part of a competition. If, on the other hand, you are setting off for a daunder along a defined cycle route with a friend, that is a bot different.

It is a rather grey area - if you start increasing your dose to be able to do something, where do you set the limits? And of course - that takes us back to my initial comment about red flags. Are you on the right dose for YOUR PMR at this point in time or have you overshot the dose you really need?

[Mervetheswerve in reply to PMRpro]

I suppose I was being understated; I don’t have PMR symptoms at all but the matter is complicated by a rotator cuff injury which I’m having looked at by a specialist in a week or so. That is painful when I lift my arm but it’s a different sensation. I’ve tapered very slowly this time around. During my first PMR taper cycle I religiously reduced by a mg every four weeks. This time I’m taking it much more slowly, e.g. I was on 7mg for about 8 weeks before I came down to 6.

[PMRpro Ambassador in reply to Mervetheswerve]

That's a different matter altogether - but what will 4 days cycling do to a rotator cuff injury?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I dread to think... having a rotator cuff issue🤦‍♀️...

[Mervetheswerve in reply to DorsetLady]

I had surgery on it 22 years ago and suspect it has gone again. A scan will hopefully confirm. In the mean time, the good news is the position on the bike doesn’t interfere with it too much.

[PMRpro Ambassador in reply to Mervetheswerve]

"too much" - so it does have some effect?

[DorsetLady PMRGCAuk volunteer in reply to Mervetheswerve]

ditto to PMRpro comments...

[Sillydogsmum in reply to Mervetheswerve]

Sure as heck will interfere with it if you happen to fall off or take an unexpected tumble !

[DorsetLady PMRGCAuk volunteer in reply to Mervetheswerve]

Because I know much of the area…in fact some of it very well, I’ve just looked at route… and even though you are a very experienced biker, it may not be quite as benign and bucolic as the blurb suggests.

It’s your choice of course, and I wish you well, but I have reservations on the enterprise as a whole, with or without RC and extra Pred .

[PMRpro Ambassador in reply to DorsetLady]

Just had a look too - and this

nigelgbruce.com/magic-rides...

uses the words "quite challenging" and "I rode ‘King Alfred’s Way’ in October 2021, blessed by a spell of mostly dry weather, which was fortunate as after rain some sections can get boggy (Surrey heathlands) or slippery (South Downs chalky trails). "

A rider also in his 60s - but NOT one suspects with PMR or a dodgy rotator cuff!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

My thoughts exactly - and the western part of the route across Salisbury Plain could be very uncomfortable… and inhospitable. It’s not an reknowned military training area because it’s soft and cuddly …

[PMRpro Ambassador in reply to DorsetLady]

How's the weather forecast? We are in the middle of the Icy Saints days - Wednesday is the last but they tend to be cold and wet and leave their mark on off-road surfaces! They arrived in disguise on Saturday here - lovely day, 24C, but Sunday the thunder arrived here and there and yesterday it chucked it down, thick cloud and no sun to dry anything up today and to chuck it down tomorrow ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I think the meteorologists would say “unsettled” … which usually means rainy.😊

[Pixix in reply to DorsetLady]

Still boggy here in Wiktshire. We are 12 miles from Salisbury, but still walking through water & mud! I doubt if conditions are much different on Salisbury plain, except that that is usually churned up bt tanks, not donkeys!!

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

... and bloomin' cold with it...

[Mervetheswerve in reply to Pixix]

Yes, that is a concern. I’m looking at road way detours if it gets too bad. Thx

[DorsetLady PMRGCAuk volunteer in reply to Mervetheswerve]

Well don't go off the track on Salisbury Plain! 💥💣- friendly advice from the widow of ex-artillery man [widowed 20 years after end of HM service I hasten to add!] - and long term employee of MoD..

[Pixix in reply to Mervetheswerve]

I don’t know the tracks across the Plain well, I’m afraid, we are in the NewForest so walk there…more peaceful than the tanks! As DorsetLady says no going off track on the Plain…you could get shot some days, it’s a very lively tank practice area. We can hear ammunition being used 15 miles away!!! Good luck, S x

[Mervetheswerve in reply to Pixix]

Yes, according to the MoD website it’s fairly quiet at the moment but others have read the same recently and it’s been far from it! A new cycling dimension.

[DorsetLady PMRGCAuk volunteer in reply to Mervetheswerve]

Hmm!

[Pixix in reply to Mervetheswerve]

Ha ha…a dimension you could do without, maybe? Here in the New Forest we had a road cycling race on Saturday & watched a cyclist go too near a 2 day old goal who jumped out into the road & was so nearly hit by the next 3 cyclists. We have different hazards here. Oh, & if I hadn’t stopped as I could see what was coming, I would have hit the 3 cyclists!

[SnazzyD]

Looking at it with my logic (?) it isn’t an easy answer.

Damage - Pred won’t help you with physical damage done which can be more likely from long term Pred and PMR. A dicky shoulder won’t be protected or overuse of joints, ligaments or muscles. If any bit of you gives out on the day, what are the options to stop and get home?

Flare - If you have a flare because of over exertion causing an increase in autoimmune activity, it isn’t obvious how much you would need. Also, the flare might not happen on the day but a week or 3 later. If it is a whopper, you might need 10mg or more; 2mg extra on the day could be useless.

Adrenal insufficiency - If it is a concern about not having enough cortisol to pedal for the day, that too isn’t obvious and may need to be treated IF you need it because you feel faint, sick and wobbly and sugar doesn’t help within half an hour. This can come on at any point and very quickly but may not happen. Take supplies!

To increase or not increase, what is the occasion? It’s a slippery slope a personal choice and assessment as to whether a Pred increase is legitimate. A rare occasion where there are options to bail out and there isn’t much jeopardy is one thing. Doing an activity that is sustained and strenuous is another. It might be a once in a lifetime not likely to be repeated any time soon then possibly. Avoiding repeated dosing up because one always finds a reason that this time it is important is advisable.

[Ridge in reply to SnazzyD]

Very good advice!

[123-go]

Mmm! A flare last year after a long bike ride? A bike ride coming up shortly AND with rotator cuff injury? I’d give that a swerve Merve! Whatever you decide- good luck.

[Mervetheswerve in reply to 123-go]

But I finished Pred all together by then as I tapered too quickly

[123-go in reply to Mervetheswerve]

Yes, I read that. Perhaps I’m being over cautious on your behalf but I do feel that four days off-road biking at this stage of your PMR journey plus RC issues is a big ask. Who knows what effect this will have, 2mg extra pred or not? Your decision, of course and as I said previously, I wish you well.

[PMRCanada]

I think many of us are faced with such decisions throughout our PMR/GCA journeys.

I chose to add 1mg the night before and day of my son’s wedding as I was hosting the rehearsal dinner (homemade food for 15 people), and was running around with my grandsons and dancing at the reception. I justified my decision by acknowledging that this was a one-time event (hopefully).

I also take an extra 1mg of pred when travelling (on travel days). I’ve done this likely 5 or 6 times during post-COVID travel.

There are factors to take into consideration with each scenario and in the end it’s your decision. Do you have a doctor to consult with? I’m assuming you’ve slowly increased your physical activity to prepare for such a physically taxing event. Good for you to be able to even consider participating….likely not an opportunity others on this forum could imagine doing. Here’s hoping that if you do indeed participate it doesn’t further damage your rotator cuff problems. Let us know how you make out if you take decide to participate.

[Mervetheswerve in reply to PMRCanada]

Hi PMRCanada! I do a lot of bike riding so, yes, I am physically and mentally prepared for the ride. I do have a doctor and we have agreed that I should taper much more slowly this time around. If I was tapering at my previous rate I’d be on about 3 or 4 mg today but I’m still at 6 with no PMR symptoms-just need to make sure I don’t tweek the rotator cuff. I know where this hurts well enough and am able to mostly avoid those movements. I’ll let you know how the ride goes! M

[Bcol in reply to Mervetheswerve]

Just a thought, your doctor has, sensibly, agreed with your slower taper which I assume means that he/she? is happy that will help with keeping the PMR inflammation under control. Have you spoken and discussed with your doctor the pros and cons of this ride, particularly with the additional rotator cuff injury you have? Looking at this from a health point of view I would be looking at a risk rating scenario/matrix, being totally honest in my decisions, and deciding if I was in the green, amber or red sector.

Link below.

safetyculture.com/topics/ri...

Obviously it's a personal decision in the end but a full consideration of everything involved is always worthwhile.

[Mervetheswerve]

Thanks for all the advice. I’ll let you know how it goes.

[Knowingstillness]

No. Just enjoy the ride ….& we’ll done for keeping active. Hope you get the rotator cuff sorted 😊

[Daffodilia]

I only add 5 mg of pred for a week if I try to reduce from 6 and find I can’t shake the pain and stiffness when I return to 6. Are you sure you should be doing this long bike ride?

[Louisa1840]

It seems to me, Mervethe Swerve, that you are a risk taker and despite comments advising you against doing this ride you won't like yourself very much if you DONT?

Go for it and deal with the consequences should they arise.......

[PMRpro Ambassador in reply to Louisa1840]

Bearing in mind that a possible tumble with an already dodgy rotator cuff COULD result in no more biking at all????

[Louisa1840 in reply to PMRpro]

True, Pro but that is something he has to weigh up. It's tricky isn't it trying to balance the mental health factor with the physical...? As I said he seems like a risk-taker........

[PMRpro Ambassador in reply to Louisa1840]

He does, and I have little doubt he will go. I just hope he doesn't regret it. I have spent far too much time in the NHS and know the "joys" of retrieving casualties from off-road cycle tracks that ambos can't reach but most of them are in regions where mountain rescue operate. Not sure MR are too common around the Winchester area. So it is likely to come down to HEMS and possibly the coastguard ... Or a tank ...

[Mervetheswerve in reply to Louisa1840]

Thanks. I’m not reckless but I feel good within myself and believe life is for living. Carpe diem.

[Dinahmite]

Blimey just the thought of that bike ride has me cowering under the duvet. But good luck. My husband had to have surgery to his rotator cuff after a fall. Out of action for ages afterwards.

[Mervetheswerve in reply to Dinahmite]

Thanks. I do lots of this stuff: three weeks ago I did a 4 day, 400km ride around the Norfolk coast, a week ago I did the 100+k Randonnee ride around the Isle of Wight ( 4 hours), last w/e I did an 85k road ride around Oxford. Keep going everyone!

[Dinahmite in reply to Mervetheswerve]

Wow! What is your secret? Are you a Neanderthal? Respect!

[ChinaWuntoo]

Am I allowed to ask "Should you be aware of the consequences for others if you get unwell on the ride?"

I have reason to be aware of this issue due to a member of my family who has terminal cancer and is determined to travel for a week within a projected life span of a couple of months.

[Viveka]

See a good physio to see whether anything can be done to protect shoulder? Enjoy the ride through the fab land of Wessex. Keep in touch.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

See a good physio before tomorrow? Not sure that's achievable..😼

[Viveka in reply to DorsetLady]

Have to be Doc Google then. Keep me on my toes, DL. X

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Thought you might have a hotline to your own personal physio ..😂🤣

[Viveka in reply to DorsetLady]

Ah but I do! A wonderful proper hands-on physio who used to be at Bath Rugby. I started with her for torn supraspinatus a year ago and she has worked on knee, SIs, esophageal alignment and tomorrow will advise on why I now get L hip pain sitting cross-legged. I have told her I am with her for life, like a stalker.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Lucky you...

[Viveka in reply to DorsetLady]

Yes, after many years of bad, harmful or average physios finally found a gem. Had another good one a while ago but he was destined for better things and went to the premier league. I think he was wasted on the likes of me.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Never, all experience, and although not many footballers get PMR...it may come in useful one day...

[Viveka in reply to DorsetLady]

Yes, he'll probably move on to private practice like my rugby woman. I'm a GCA gal. I saw him after a shoulder cartilage repair, following a top physio who misdiagnosed cartilage tear but PLUS subluxation which she strapped up, resulting in frozen shoulder. Got the scars, got the T-shirt.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

I have a similar issue - when shoulder replaced [very successfully in the main] surgeon had to put a few stitches in RC as it was in a bit of a mess. As it was done in mid Feb 2020, I got no follow up appointment nor physio due to C-19 lock down... so any physio was from my experience from previous knee/hip replacements and good old YouTube videos.

Unfortunately at the time, I had nothing on my discharge notes regarding the RC.. all I could recall was surgeon saying post op {and me not fully compos mentis] - "very successful, but I've tweaked your RC."

As I was discharge the following day, no chance for another chat... by the time I did actually see a physio [privately] it was probably too late to address the subluxation successfully... it is better now that it was, but it still catches me out occasionally if I get that arm in a certain position.

I did mange to see surgeon some 18 months after surgery, but all he could offer was exercises and another replacement [reverse] which would give less movement so we decided, no point...

[Viveka in reply to DorsetLady]

Oh dear, that's disappointing. Covid has a lot to answer for. But I suppose if it's only an occasional problem, that's something. (Shame you're a bit too far for my physio, but if you're ever near Frome...)

My shoulder wasn't dislocating, it was a nerve damaged by cartilage tear causing shoulder to give massive jerks. This physio who I had consulted for years and who was once chair of royal society training group diagnosed it as subluxation and, because she strapped it up, it froze within days apart from continuing to jerk. Nothing like subluxation I subsequently realised.

When I came out of anaesthetic it gave a huge jerk and broke the stitches. I went into meltdown and they called the surgeon back. Eventually he confirmed it was a nerve issue, the like of which he had never seen. It was cured in two sessions by acupuncture. The freeze dissipated quickly once that was settled. Shoulders, eh.

[DorsetLady PMRGCAuk volunteer in reply to Viveka]

Shoulders - yes... always had broad ones, literally and metaphorically! So I'll get through, it only really happens on a couple of Pilates exercises... so no great shakes - just a twitch to be honest...😼🤣😂

.. life's too short to get in a stew over it.. and it doesnt stop me on a day to day basis. but as you say got the T-shirt!

[Sillydogsmum]

As ever, great contributions from everyone; food for thought for all.......attitude to risk is so subjective. If only rotator cuff injuries were easily amenable to treatment with reliably good outcome in folks without PMR and on long-term steroid therapy..........

[Stills]

I don’t have PMR, I am not on pred, I don’t have an RC injury.

I do have Stills Disease (joint pain and immobility and afternoon crashes) and a recovering leg muscle injury that went untreated during the pandemic. Throughout 2023 I had cancer investigation which thankfully were all negative.

Every action I take is weighed up against the risk of more pain and immobility and how that may affect things like visiting my aged Mother or a six hour round drive to see my grandchildren but I did take the risk of going to Thailand early this year for three weeks despite feeling under par and didn’t regret it. Only you can assess if it’s a risk or not in your current situation.

I wish you well whatever you decide .