My Story

[A77bruin]

Hi all…..

I was diagnosed with PMR in June 2021 - I live in California by the way. My regular Dr. put me on Prednisone and it took nearly 5 months to find a Rheumatologist - I do not live in a big city and they are not easy to find.

I know that Prednisone wrecks havoc on tendons and such. In August 2021 I was having pain in my right shoulder. By December I was having pain in my left shoulder. Turns out both rotator cuffs were torn. Here is where the Catch 22 starts. My orthopedic surgeon wouldn’t operate on me because I was at 20 mg of Prednisone, and Prednisone inhibits healing, and my rheumatologist wouldn’t lower my Prednisone because of my inflammation makers.

Let’s fast forward to March. I was finally down to 5 mg of Prednisone so my right rotator cuff was surgically repaired. Unfortunately I had waited so long that the surgery failed - the tear was too big. Well the surgeon knew the left tear was bigger so rotator cuff surgery was out of the question for that side. On June 29, 2022, I had complete shoulder replacement on my left shoulder. On November 29, 2022 I will have complete shoulder replacement on my right shoulder. Thank you PMR and Prednisone!

Side note: while recovering from left shoulder replacement, my dr. inadvertently prescribed a large dosage of the antibiotic Clindamycin. About 6 weeks later I was in the emergency room with the most severe abdominal pains I have ever had. Turns out I had C. Diff, Colitis. Look it up. Horrible.

So, in 3 weeks I am going to Portugal and Spain for 2 1/2 weeks. My Prednisone will be down to 5 mg (recently raised due to inflammation markers but tapering down). I do not want to raise my Prednisone because I don’t want to put off the surgery for right shoulder replacement a week after my return. In your opinions, what do I do when traveling? AND, I normally take the medication between 8-9:00 A.M. Should I stick to that schedule meaning I take it between 4-5:00 P.M. or s I still take it around breakfast time?

Phew! Long story….but thank you if you read it to the end!

Bobbie

[DorsetLady PMRGCAuk volunteer]

hi,

Sorry to hear about shoulder issues, and results from replacement….

This is mytake on flights/meds….have a read through and then amend according - won’t be as complicated as, but would suggest you do a bit of juggling to remain taking Pred in morning -

Long haul flights  -meds

 Long before GCA, my son always said put your watch (and mind) on local time in country of arrival -and work to that.

Depending on which way you are going… forwards in time or back you need to think about medication times.

Sometimes it would be good to travel with Dr Who in the Tardis!

On my first trip to NZ when still on Pred, I took usual morning dose in UK (taking an early evening flight)with stopover in Singapore. 

Took another dose with last meal on plane before landing at Singapore-local time 17.30 next day (UK time 7hrs behind).

Left Singapore evening around 3-4 hrs later -arrived Christchurch mid morning following day (another few hours ahead) so again took dose with breakfast on plane.

Back to morning (local time) next day.So actually took 3 doses over 27hours rather than 2 -but no issues, and probably helped with travelling hassle…

On return flight -left NZ their noon -so usual dose in morning -either take half a dose in Singapore airport or on UK flight plane with supper (flight left evening local time) and then usual dose with breakfast on plane just before landing 6am UK time.

Just sit down with times of flights and work out..always better to take an extra dose or half dose than not enough .

Most of all enjoy…and make sure all meds in original boxes and copy of prescription in your hand luggage -and book assistance-always a long walk at airport.

Worked for me.

[A77bruin in reply to DorsetLady]

Thank you so very much. That does help me and although it sounds confusing I’m going to do my very best to adhere to it.

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

Well yours shouldn’t be as confusing -only one long haul flight - US to Europe is relatively easy -take as usual morning of departure. Then next day take European morning.

Return journey -you may need to add in an extra dose (say half) because there will be more than 24hrs between the doses if you take 8am European time, then next one at 8am US time.

Just sit down with a a piece of paper and work it out….😊…

[A77bruin in reply to DorsetLady]

Makes complete sense! Thank you!

[PMRpro Ambassador]

Your juggling with the pred will be as you return home - that long day travelling. I add an extra part-dose to cover that: I take a dose in the morning in Europe and about 1/3 of the total dose 24 hours later to take me to next morning and back to normal timing.

Travelling from the US to Europe I just take the normal dose in the morning and the next dose the next morning - a bit early in the 24 hours but the extra bit helps compensate for the travel stress.

[A77bruin in reply to PMRpro]

thank you very much for your advice. But when traveling from the US to Europe, if I take my normal dose in the morning, and then start taking all the rest of them in the morning while I’m in Europe, I will always be eight hours ahead of when I usually take it. Does that make sense?

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

That doesn’t matter -you will still be taking it every 24hrs -which is more important. You and your body will be on European time whilst you’re there…

I had GCA when NZ where there is a much bigger time difference…never proved a problem.

[A77bruin in reply to DorsetLady]

You're the best! Thank you!

[PMRpro Ambassador in reply to A77bruin]

DL has explained - you need the pred relative to when you wake up, not the time back home.

[piglette]

What a story. My orthopaedic surgeon would not operate because of steroids and wanted me on zero. After some negotiation he agreed in 5mg! I must admit my doctor does not go on inflammation marker results but how I feel. My markers are always exorbitantly high, but my doctor just shrugs. Do you up your steroids even if you feel OK if you have raised markers?

[A77bruin in reply to piglette]

I completely trust my rheumatologist and always listen to her advice, I don’t increase or decrease on my own. When my inflammation markers were very high after my C. Diff. Colitis, she did not increase me because she knew it was because of that.

[piglette in reply to A77bruin]

You are very lucky to have a good rheumatologist. They seem to be few and far between based on feedback from this forum.

[A77bruin in reply to piglette]

I do consider myself very fortunate…..and I tell her that every visit!

[MiloCollie]

when you say your pred will be down to 5mg - instead why don’t you wait until after your holiday to drop to 5mg. I presume you’re on 6mg or 5.5mg at the moment. If you feel well I would stay there. I’m doing the same. I paused for my daughters wedding and stayed there til after a weeks holiday. Around 5mg the tiniest changes in pred can be very noticeable and personally I’m not prepared to feel rubbish on a holiday! Good luck

[A77bruin]

Wow….you certainly gave me food for thought. I have a call into my rheumatologist asking her opinion if I should stay on 10 - my current status - or even 7.5 for my trip and drop to 5 when I get home. I definitely need to be on 5 because the week following my return, I am having my 2nd shoulder replacement and my orthopedic surgeon won’t operate if I am over 5 ….. I have waited SO long….. I don’t want to mess it up!

Thanks so much for your comments!

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

if you go up to 10mg to cover your holiday and then drop back down to 5mg for operation that may cause issues….would be better if you could manage on 7.5mg whilst away.

[A77bruin in reply to DorsetLady]

I was thinking the exact same thing!! 2 great minds……

[DorsetLady PMRGCAuk volunteer in reply to A77bruin]

👍

[PMRpro Ambassador in reply to A77bruin]

How long is the trip? You can go to a higher dose for up to 10-14 days and drop straight back to the dose you were at before without tapering.

[A77bruin]

The trip is a total of 23 days.

[PMRpro Ambassador in reply to A77bruin]

You could do 10mg for some days, 7.5mg for some days and back to 5mg.

[A77bruin in reply to PMRpro]

I think that is exactly what I will do! Thank you so much for your advice!