Starting again?

[Claremont2023]

I have PMR diagnosed Jan 2023. My dosage started at 15 mg reducing so far to 12.5mg. Have just been on a holiday & managed to get E.coli quite badly. Was on a drip + lots of medication so (stupidly?) stopped the Prednisolone for 3 days. Have been back on 12.5 mg as usual so far, but with red face, which had worn off, plus face more puffy again. Sure Doctor won’t be pleased but thought I was doing right thing. Any thoughts?

[SnazzyD]

Presumably if you were on a drip you were in hospital? The doctors really should not have allowed the Pred to have been missed out without some sort of corticosteroid backup, perhaps IV. You could have had an adrenal crisis which can be life threatening and is more likely if you are ill. The puffy red face often comes with steroids but does wear off as the dose drops.

[PMRpro Ambassador]

As Snazzy has explained - you really shouldn't have stopped the pred, in fact you possibly needed more under the Sick Day Rules. However - what's done is done, If you are now feeling back to "normal" or what passes as normal when you have PMR, then I'd stay at 12.5mg until you feel recovered from the E.coli and then aim for your next taper if that is what you are supposed to do.

You do know to be more careful in the sun when you are on pred don't you? You can burn more easily and that contributes to the redness.

[Claremont2023 in reply to PMRpro]

Thanks for your replies. I should have said - I was in a Nile Cruise. I had a Saline drip + Antibiotic drip. The Doctor had very limited English even though I explained fully my meds. So hospital not involved. I’m nearly back to normal so hopefully a few more days will help. Lesson learnt! Thank you all for your support.

[SnazzyD in reply to Claremont2023]

Glad you got through it! Even if you did carry on with the oral Pred yourself it is likely your absorption wasn’t great. Language difficulties or not, he should have known as it is basic medicine. A bit worrying!

We were on a cruise ship and I had a tour of med bay because I was a fellow health professional at the time. There was much pride in the fact that the staff were super experienced in trauma, aesthetics etc and the doctor had spent time in a war zone. My husband got an outer ear infection and all he got was Paracetmol for his throat and chest (?!) and a decongestant. You could see the flippin problem from the back of the room. Next country we went to a pharmacy and with a bit of charades and no common language got exactly the right stuff which saved the cruise for us.

[HeronNS in reply to SnazzyD]

My husband seems to make a habit of coupling travel with illness. We were on a cruise in the Eastern Mediterranean a few years ago and he developed his usual lung problems. Good and prompt treatment from the on board doctor. Also a massive bill for one apppointment and one antibiotic prescription. When we got home insurance company told us to get what we could from NS health system and then apply to them for the balance. Our provincial system covered $18 (this was back in 2011, no doubt more now) and the bill was $800.

[SnazzyD in reply to HeronNS]

So my husband’s Paracetamol with decongestant was a bargain at $100 then!

[HeronNS in reply to SnazzyD]

Indeed! It appears the pharmacy had common sense if not common language.

Incidently this meant a cancellation of day trip to Rome, substituted with a half day in Tuscany region, and I was wondering what the other passengers on the bus thought about the fellow who was coughing all the time. So here we are, standing in a country area where there are ancient remains, like underground chapels or something, and the tour guide reached down and plucked a herb from the ground, giving it to us to smell. I think it was marjoram or oregano. I picked a bit, and carried it with me, and my husband's coughing stopped. I made him keep taking whiffs of it all the way back to the ship.

[Sophiestree in reply to HeronNS]

Quite possibly Oregano

[PMRpro Ambassador in reply to HeronNS]

greenprints.dlshsi.edu.ph/g...

to back up Sophiestree 's comment

[HeronNS in reply to PMRpro]

The theme of the paper, which I can't download, does back up my experience. Hubby denied the herb was helping, but it really did stop his very irritating cough. Must look into why this herb seems to help.

[PMRpro Ambassador in reply to HeronNS]

I just googled oregano for cough - several references appeared. I've never looked here - herbal medicine is very much part of the culture.

[HeronNS in reply to PMRpro]

On a separate trip, this time with two of my kids and no husband, to Egypt, one of our experiences was learning about Egyptian origins of aromatherapy. It was fascinating. I had for many years wanted to get hold of some lotus essential oil, ever since a lecturer (Mr. Delsham-Denshaw) at the British Museum wafted an enormous hankerchief loaded with it before our faces and it was heavenly.

[Sophiestree in reply to HeronNS]

I have bad sinusitis and use a neti pot with oregano oil. It's quite strong but helps. Not a huge fan of oregano but prepared to put up with it if it works. Also fine himalayan salt has helped me for anyone interested in the sinus side of things.

[HeronNS in reply to Sophiestree]

I've tried several times to interest my husband in a neti pot, or other similar devices but he's uninterested.

[Claremont2023 in reply to HeronNS]

My final bill was £190 which was for 2 drips + antibiotics & 2 other pills for gut. Doctor visited 6 times in 2 days, so not bad. I thought it would be much more.

[HeronNS in reply to Claremont2023]

Sounds like you got a lot more for your money! I think, comparing currencies, it was less than half our amount.

[Mansplainer101 in reply to HeronNS]

At 84, I have given up on travel because of problems like this. You simply never know what is going to happen, what level of care will be available, and if there will be any chance of reimbursement when you return home. The same problem with dental problems. I have crappy teeth, have had a number of root canals, and would not relish having one done by anything other than a root canal specialist. I don't know how it is in the UK, but in the Washington DC metro area where I live, it seems that every dental procedure has it's own specialist. Had to go to a guy who specialized in extractions to have a tooth taken out and, of course, to a specialist for the root canals. The beauty of this is that the specialist really knows what they are about and the procedures were basically painless, but a but uncomfortable.

[HeronNS in reply to Mansplainer101]

I decided during the pandemic for a number of reasons that I would never travel by air again. Primary reason was climate change. I also felt I'd done quite a lot of travelling in my lifetime, and although we would probably have gone on a couple more trips in the past few years it began to seem to me that I'd probably way overspent my allotment of travel. Decided that I would travel by train to visit my daughter, and that would be it. Most of my travel has been to see family, nearly always combined with sightseeing, but we've taken a handful of purely touristy journeys, so I've been very fortunate.

As for the health thing, quite apart from the risks of illness associated with travel, and not just SARS-CoV-2, you are quite right, Best to stay nearer home where we know what to expect!

[Mansplainer101 in reply to HeronNS]

Also, for me, I had the wonderful opportunity to reside abroad, with my family, for 21 years in Taiwan, Japan, Australia, Hong Kong, China, and Belgium. My travel "bucket" is 100% full.

[PMRpro Ambassador in reply to Mansplainer101]

Only really works where there is a large population seeking the services - man cannot live by extractions alone ...

[Mayadill in reply to Claremont2023]

An Egyptian/Libyan/Algerian doctor, anywhere in North Africa would almost certainly speak French. Sub-Sahara depends but if not English then probably French The French for corticosteroids is.....corticosteroides, so not much of an excuse there. The French for PMR, i have just looked up, is pseudo-polyarthrite rhizomélique, so yes, could be difficulties there.

I think as a linguist my basic advice to anyone in such a situation who's able to is before leaving home identify the Websites that describe your condition and treatment and have them noted on your phone, then simply open Google Translate - translate.google.com - paste in the Website, select the language you want it translated into (huge choice), click and the miracle happens, thus for PMRPro auf Deutsch the Versus Arthritis PMR page. You can also translate documents if you have scanned letters etc.

Versus Arthritis PMR page in German courtesy of Google.

[Claremont2023 in reply to Mayadill]

Thanks fir this. Maybe before I go next time I’ll have a few things translated so I’m ready.

[TheMoaningViolet in reply to Claremont2023]

I love so much that you are planning your next trip. 👍I want to have as much energy as you when I reach your age. My mother is 79 and it's difficult to persuade her to visit us in London from another European country.

Glad to hear you are better. My brother picked up a gut infection from Egypt on his honeymoon. It took him weeks to recover.

[Claremont2023 in reply to TheMoaningViolet]

I refuse to get old, that’s my excuse!

[Stills in reply to Mayadill]

brilliant! I have chronic Adult Onset Stills Disease diagnosed over 40 years ago and although mainly med free an attack will leave me Immobile and unable to take care of my own basic needs to drink water and go to the bathroom . I have always carried a list of previous meds that have worked for me during flares and these days a link on my phone to info about Stills and treatment with the intention to use translate if needed. Luckily I’ve never had to use it. Off to Italian Lakes in a few weeks, Spain in September and planning Thailand next year as long as new tests for malaise and strange weight loss don’t reveal anything that prevents it.

[PMRpro Ambassador in reply to Mayadill]

Just to add - Spanish is easy peasy since many US sites offer info in both English and Spanish so you know exactly what is says and it is correct - which Google translate can not always claim to be!!!

[Mayadill in reply to PMRpro]

Absolutely. Patient information is probably better because it's written more simply, less likely to faze the bot. If like Claremont you're being treated for something completely different, all they need to know is the basics and not to screw them up. Maybe just get a brief letter from your GP. This patient has 1) polymyalgia rheumatica of x years' duration and is currently on y mg Prednisolone. This medication is not to be stopped. 2) type 2 diabetes etc.

[PMRpro Ambassador in reply to Mayadill]

Google is pretty good at legal-speak though!

[sidra1968 in reply to Claremont2023]

Oh a Nile Cruise, that was my favorite of all of my travels! Hope you feel better!

[Claremont2023 in reply to sidra1968]

yes, pretty special.

Thank you.