What should I do now please?

[Elispeth]

Hi all I am wondering if you would be able to help me please?

I have been stabilised on 7mg of prednisolone since last month June 2022.

Unfortunately three weeks ago both my husband and myself picked up a nasty respiratory virus that was reported to be circulating around this area of Spain. I immediately followed sick day rules of taking an extra 5mg for five days followed by a further four days of reducing by another 1mg back to 7mg by 14th July. I never really recovered as well as my husband and since that time have still felt that I am in recovery.

Just three days ago I tested positive for covid (followed by my husband one day later). I felt very unwell during the night with a bad headache, muscles aching, a high temperature and I couldn't walk unaided. I was relieved to be testing positive as I knew what I was dealing with. I immediately followed sick day rules for covid taking 10mg morning and night and it has made a remarkable difference.

My dilemma now is that the leaflet says after 5 days follow your doctor's advice for reducing safely. I am unable to leave the house or go into the medical center within the next few days to ask forhelp . I can book a telephone appointment but it is very difficult as this will need to take place via an interpreter andwill need to be arranged. Does anyone have any idea please on when and how I should reduce safely? Thank you so much if you do.

[PMRpro Ambassador]

After only 5 days you can actually simply stop taking the extra pred and go back to the 7mg. If you don't want to just do that, you could start to reduce in smaller steps over the following week or two to get back to 7mg. Up to 110-14 days it isn't long enough to make much difference and at 7mg you probably don't have much adrenal function anyway, need to get to below 5mg before much recovery starts.

Do you not have any access to a doctor who speaks English? Google translate does actually work very well for asking questions if you keep the statements simple. Have you lived in Spain for long?

[Elispeth in reply to PMRpro]

Hi PMRpro. Thank you so much for your quick response. I will follow those guidelines after five days and start to reduce again. I wasn’t sure what to do because it seemed a much higher dose at 10mg twice daily than just adding 5mg daily to my normal dose. I have to say that it made a remarkable difference when I took them.

Yes we have lived in Spain for over four years now. Unfortunately when it comes to medical situations my basic Spanish is less than useless - and our regular friend/interpreter is away on holiday for a month visiting family!

A few doctors do speak a little English at our medical centre - the receptionist does not converse in English at all! It can sometimes be difficult to follow the conversation when some words seem unfathomable in the conversation.

The medical centre used to have a team of interpreters who attended voluntarily each day to help out but since covid that has all stopped. It is such a shame! We can use an interpreter on the phone when we attend but very often the doctor is running late and the person on the other end of the phone is no longer available. It can sometimes be very frustrating but we are always grateful just to be entitled to the medical care here.

[PMRpro Ambassador in reply to Elispeth]

Covid won't have helped your language progess either, Is Spanish TV as rubbish as Italian TV? In Germany I watched loads of TV and did language classes at evening school and within a year was fine for most things and after all these years my German is as good a lots of locals here, even the grammar! But my Italian is very wobbly for more than basics and TV is awful so I won't watch it to even try to improve my Italian. It only occasionally matters as it is my right to have a German speaker if the doctor doesn't - even though they should speak both German and Italian to be employed. But at my last rheumy appointment it was an Italian guy who had worked in Germany for a year and spoke really good English - we had a great time, though what his colleagues may say at the notes I'm not sure, he wrote them in English! My usual rheumy used to work in the UK so his English is also excellent - and of course both need it for international meetings and publications.

[Elispeth in reply to PMRpro]

We don't bother with Spanish television much but use two Apps that are available to download via a digital box. One is called Filmon the other is Pzaz. Both are payable monthly. I can recommend either of them.

We were both avid learners doing language classes and we really were doing well, and then covid......! We are now doing Duolingo but have found that the words are very different from mainland Spain. Our teacher told us that it is teaching us South American Spanish? We have yet to get onto anything medical 🙄!

I am so pleased that you have found some health professionals to help that can speak English. It is a huge bonus. We had one English speaking doctor in the Canary Islands and my consultant at the Department of Internal Medicine spoke English too. I now regret leaving there after my experiences here. We do live and learn! We are thinking of moving back there at the end of our rental period here.

[PMRpro Ambassador in reply to Elispeth]

It isn't a problem really - I was a medical translator for many years! I get all the German side of things - and usually manage to remember the relevant term in German. It is quite funny, I can have been translating a German medical term to English automatically for the last 2 hours but if you ask me what the German is for the English term I have to think!

South American Spanish is VERY different from Spanish Spanish, I understand even native speakers sometimes struggle. It is bound to be a bit like north German, south German and Austrian German - or Scots speaking English to Londoners!

I did Italian at classes in the UK - useless for everyday use! I don't wish to discuss politics or culture thank you! It is living and shopping that teaches you the necessary.

My husband was very keen on Film-On, we were on a site at Venice and the guy on the next pitch told us about it. I wasn't that bothered originally but enjoy documentaties so I continued the subscription when I realised how much German TV has deteriorated in quality - like everywhere else I suspect. I have the choice of German, Austrian and Swiss German TV - brilliant for winter sport though!

How easy will it be to return to the Canary Islands? I love living here - weather is better than the UK even if I am restricted a bit with travelling now. Not even keen on a trip to the UK at present - I might get stuck there! I have had this flat 15 years, and the village is perfect, has everything I need.

[Elispeth in reply to PMRpro]

So sorry I missed this post completely! Although we enjoy learning the language I don’t think that we could ever converse on our own without our interpreter in a medical situation. Linguistics is a a fascinating but complex subject. When we use our Google translate it really does come up with some bizzare things - like our decorator was asking if he could call at our house to collect the escalator which was his step ladders! Literally speaking it does make complete sense but it always takes some working out,

Your job sounds fascinating. It is a far cry from our humble offerings to learn the language. I think that we can converse better in Greek and Welsh more than we can in Spanish at the moment.

Yes you are right about Duolingo I sometimes think that it is more of a hindrance than a help as most people don't understand some of the words that we use - coupled with the pronunciations it does leave a lot to be desired. We can but continue to try and most people are so happy to help once we speak to them in Spanish. We have spent many an hour sitting in the queue at the police station (for identity cards etc) overhearing other people's conversations at the desk. The staff don't speak English at all and then when it is our turn to be seen we speak Spanish and they are only too willing to converse with us in English. One nice officer that we spoke to was very very tired he said dealing with endless queues and angry people!

So glad to hear that you know about the TV Apps. I thought that you must as you have lived away from the UK for so long.

We should be able to return relatively easily to the Canaries with all our paperwork and we know people who have accommodation. It is only the 36 hour ferry ride that we have to negotiate 🤢 🤮! We really miss the beaches and temperament climate out there although they have just has another climate again which brought rain with it. It has brought about an awful lot of mess with it thus time. Usually it was just the wind that drove the sand into the house. We had one here at the end of last year and it has caused havoc in Andalusia! The whole town is needing to be whitewashed again - hence the decorator urgently needing to collect the escalator from our house 😆!

[PMRpro Ambassador in reply to Elispeth]

Hehe - similar happens when I use terms from Germany that aren't quite the same here! Lateral thinking is a very useful trick. And knowing that the first word in the dictionary is mostly NOT the right one.

I rarely translate now - just the menus for a hotel in the village. And I think you would be surprised about managing medical stuff without an interpreter. I did have a baptism of fire in Germany - suddenly 4 weeks in hospital because the baby wasn't growing! But it improves - and makes life easier as you age, Even the French respond favourably when you start by apologising in French that your French isn't better!

Where are you? My friend has just sold her former family home in Torrveija - think Covid persuaded them that the Brexit changes made it not worth keeping, They had got there to tart it up to sell it - all clean and lovely, and the Sahara dust arrived! All to be brushed off ...

[Elispeth in reply to PMRpro]

I think someone should write a book about the funny little things that emerge out of Google translate and also people sometimes getting it wrong - the famous one being Polio and Polia! You might have heard it before but it really happened to our older friend in the supermarket. He was proud of his Spanish and he proudly stood there one day saying to the supermarket assistant 'I would like a very large chicken please! ' The girls were in hoots!

I also went into the DIY store for some whire spirits as we were painting the window and I proudly asked 'Is the Holy Spirit in this bottle? I just couldn't understand why the young man found this to be hilarious! I could go on but I mustn't as this site is for PMR related conversations!

We are on the Costa Tropical not too far from Malaga. Yes a lot of Brits are now selling up and moving back to the UK as you know after Brexit we have now become a third country.

Thank you for taking my mind off covid and for cheering me up no end 😆!

[Elispeth in reply to Elispeth]

Please feel free to PM me at any time x

[tangocharlie in reply to Elispeth]

I did the pollo/polla confusion once when I lived in Spain, pollo is chicken, polla is a cock, and not the male chicken type one! I also once confused 'no me molesta' and 'no molesta me' when trying to tell a viejo verde (dirty old man) to stop touching my leg on a bus. One means 'don't mollest me' and the other means 'that doesn't bother me' Yes you need to know what you're saying sometimes. Another time a GP told me I had a 'hongo' which is a mushroom. I gathered eventually he meant a fungal infection. This was before the days of Google translate which is amazing, I've seen people have whole conversations using their phone

[Elispeth in reply to tangocharlie]

Yes 😆 🤣 😂! Our friend was so embarrassed especially when everyone heard about it from his wife! Hope you are feeling a bit better now yourself! Your post really helped me when I was low 😊 ! Thank you

[tangocharlie in reply to Elispeth]

Yes thanks, I'm bouncing around again now, though some days like today hit by random fatigue for no reason I can think of, guess it's a post Covid thing

[Elispeth in reply to tangocharlie]

Glad you are feeling more buoyant again tangocharlie smile 😊! The fact that no one day is the same used to astound me when I first got PMR. I used to feel as if it was the end of the world at first when I was low and feeling unwell. As time went on I realised (as you have rightly said) that although I might be feeling unwell today I can actually feel quite good again tomorrow so I just wait it out. But it still astounds me as there seems to be no logic to it at all as far as I can tell to adequately account for the vast difference in feeling - unless it is the magic of resting! Maybe Netflix or the soaps or the audio books or anything else that I now use to distract myself! Take care of yourself.

[PMRpro Ambassador in reply to Elispeth]

"unless it is the magic of resting!"

Well yes - keep a diary of activities and weather and how you feel. Bad days will come after you did too much the day or two before. Then you HAVE to rest and you get a good day. SO you do too much ...

And weather is a big player too

[Elispeth in reply to PMRpro]

That happens to me all the time. Sometimes I feel as if the PMR has gone and then I do too much all the time - only walking in town etc. I'm excited to be out of the house. Next day I am flat on my back. Other times it happens for no apparent reason at all. I am finding that the weather is a huge factor at the moment. Like most people, and yourself, we have 35 degrees heat here. It's 42 degrees on our patio. It's hard to get up early to walk before 8am and after 9pm at present as the heat is very draining. Not so healthy I don't think.

[PMRpro Ambassador in reply to tangocharlie]

The German version is heiss, hot. If you want to say you feel hot in the sense of the temperature is hot you use the dative (I think) and say "mir ist heiss", "it feels hot to me". It is something mentioned fairly early on in German for foreigners which I did. OH had private lessons and wasn't au fait with the fact that saying "ich bin heiss", "I am hot", was a rather different concept! Cue great laughter

[Elispeth in reply to PMRpro]

Oh that is so funny 🤣! My husband was very proud of his stock phrase when someone helped him at maybe the doctors or chemist etc. He thought he was saying something like 'I think that you have been very considerate person thank you!' Our interpreter was with us one day and she said that maybe he might like to want to find a different phrase than the stock one that he had found for himself. Basically he was going around saying to people, very usually women, 'I like you 😍 !' I howled laughing for days!

[Sharitone in reply to Elispeth]

We watch a lot of German thrillers; my husband doesn't speak German so puts them through Google Translate and there are lots of howlers. One of the worst was when a victim was piteously pleading 'bitte,bitte' with her would-be rapist, and the translation said 'you're welcome, you're welcome!'

[PMRpro Ambassador in reply to Sharitone]

Oh dear!!!!!!

[Elispeth in reply to Sharitone]

Oh no!

[Sharitone in reply to PMRpro]

'Ich bin kalt' and 'ich bin warm' are similarly unfortunate!

[Elispeth in reply to PMRpro]

I was a fool because I severely underestimated PMR once again!

[SheffieldJane]

I have always gone straight back down without tapering imagining that the extra cortisol has done it’s job and I haven’t become dependent. I have taken the extra 5 mgs for longer than 5 days upon occasion a week to 10 days. I can only speak for myself. I was alright and was following my Endocrinologist’s initial advice about sick day rules. FAQs may have more information.

[Elispeth in reply to SheffieldJane]

Hi Sheffield Jane. Thank you so much for getting back to me so quickly. That is a good way of getting my head around it 'imagining that the extra cortisol has done its job and I haven’t become dependent '. I am going to look through frequently asked questions now. I have saved so many posts over the years but with my head as it is at the moment I completely forgot all about them 🙃! Thank you very much once again 🙏

[PMRpro Ambassador in reply to Elispeth]

Forgot to say before - it is really only a few days of 13mg/day, your baselines is just 7mg not zero. And it takes at least 3 to 4 weeks to get anywhere near dependent

[Elispeth in reply to PMRpro]

Okay thank you for that. So just to clarify, are you saying that I should just take 13mg in total daily and not 20mg because of my baseline being 7mg originally?

[PMRpro Ambassador in reply to Elispeth]

No - not at all. The 20mg is the recommended approach for Covid. But effectively it is like someone NOT on pred taking 13mg a day and relatively easy to stop. - or in your case, drop back to 7mg. It might be worth going to just above 7mg, the Covid MIGHT have poked the PMR into life again

[Elispeth in reply to PMRpro]

Ah I fully understand now. Thank you for taking the time to get back to me again to clarify. I understand that everyone is busy at the moment trying to reorganise FAQ etc! Thank you so much to everyone concerned in taking both the time and huge effort that this must take to run this forum and offer such excellent advice. I have said this before but I really couldn't have managed my condition without the help that I receive from this site. It is truly invaluable! ❤️

[PMRpro Ambassador in reply to Elispeth]

Not me - I just wrote stuff for it that now I can't update until it is done! That is MrsNails baby - she is very good at that sort of techy stuff. So DL and I are still here ...

[Sophiestree in reply to PMRpro]

This is interesting as when I mention at my last rheumatology appt (with the nurse) that I upped my pred by 5mgs for 5 day during covid and continued with TCZ she was not impressed to the point or irritated and trotted off to report me to the consultant. 🤷‍♀️This Friday with the consultant will be an interesting one as I was then threatened with the removal of TCZ as it clearly wasn't working if I was still on 7mg (at that time in April) and had to get to 5mg. I am in the middle of a slow taper which I reduced by a week from 5.5 to 5

Bite me lady....

[Sophiestree in reply to Sophiestree]

By the way, loving the translation conversation...

[PMRpro Ambassador in reply to Sophiestree]

One of my best friends teaches/taught English and translation in Germany - we used to sit in the kitchen and talk language - 'cos she knows all the theory and I don't. Fascinating

[Sophiestree in reply to PMRpro]

How lucky... very envious

[Elispeth in reply to Sophiestree]

Oh yes! You know it raised my spirits for the whole day 😀!

[PMRpro Ambassador in reply to Sophiestree]

Carry a copy of sick days rules! Nurses can be amazingly good - but they also have enormous gaps in their knowledge. Mind you - there are also doctors who qualify on that as well!!

Too many seem to think that TCZ works instantly and are unaware that it works but not 100% for half of patients. They just haven;t even read the summary of the papers about trial results.

[Sophiestree in reply to PMRpro]

I know. I am seeing 'my' consultant on Friday face to face for the first time after being diagnosed in Oct 2020......

[PMRpro Ambassador in reply to Sophiestree]

That's impressive - NOT!

[Sophiestree in reply to PMRpro]

😂

[Elispeth in reply to Sophiestree]

Hi Sophiestree. I am so sorry to hear that this is happening for you. Reading your profile it sounds as if you have already been on a very difficult journey up to this point. I hope that the consultant doesn't withdraw your TCZ if it has been helpful for you. Good luck with the meeting tomorrow!

I have been unwell this last month and think that I have helped myself greatly by adhering to the information that I found on this site regarding sick day rules. Like most people on this site I am always loathe to take more prednisolone than I have to. (It has recently taken me a long time to make the drop from 7.5mg to 7mg. ) but in this case I knew that I had to take more in order for my body to cope with the virus. I am not looking forward to dropping back down again as I know that I will feel very spaced out in the head for a few days - but that is just what happens for me!

I saw a Rheumatologist privately a few years back and she asked me to drop my steroids very quickly in a very small space of time 'to see what happens? ' I was having a lot of difficulty doing this (and stay at work at that time) so I made an appointment at my local surgery to speak to one of the doctors (in the days back then that we could see a doctor). The doctor told me that I should listen to my body and do what is right for me. She told me that as a doctor she had direct experience of working with the numerous difficulties that patients experienced when trying to adjust their steroid dose under direct instruction from a Rheumatologist and she herself struggled with this problem. I didn't go back to the Rheumatologist but found my own way forward once I found the information on this site.

I understand that your condition is very different again to mine and I truly wish you well as you push forward with this and make the right decisions for yourself as to what is best for your own care. Take good care of yourself x

[Sophiestree in reply to Elispeth]

Thank you for your reply. I think you hit the nail on the head there with 'listen to your body'Something I always said to my daughter when she was being dismissed regarding her new baby by every doctor she saw and the hospital where she was born. 'You know your baby, so take her to A&E. She went to a different hospital, was traiged and told she did exactly the right thing, baby seen by a registrar who said she needed to be seen by the consultant that day. I know from personal family experience, just because they qualified as a doctor does not mean that they will be a good one.

[Elispeth in reply to Sophiestree]

Thank goodness that your daughter had you behind her back then! Your sound judgement gave her the confidence to push forward and do what was instinctively right for her baby!

I find it very difficult when I am feeling unwell and feeling vulnerable to be assertive when meeting with any medical professionals. I have no medical knowledge and often worry about not taking their advice - surely they might know better? I have also experienced this many times with family over the years when we have all been involved in discussions about how to move forward to get the best treatment for certain family members. It is never easy!

Good luck with your own appointment. Take all the information that you can glean from the meeting away with you and sit quietly in the days to come and work through it all in terms of what you think is going to be best way forward for your own well-being.

[Sophiestree in reply to Elispeth]

On those occasions when you are feeling vulnerable if you have a friend or family member that will advocate for you, I would take them with you. I took my sister to a lot of my appointments as I basically couldn't walk more than 5 steps by then. She is a dentist, but does have a certain amount of general medical knowledge, so it was helpful as she remembered what they said, whereas I was just feeling too ill to listen half the time.

[Elispeth in reply to Sophiestree]

Absolutely I think that you have hit the nail on the head. When we are feeling unwell we naturally don't remember too much about the conversation. I am so glad that you have your sister to help you. It sounds as if she is a great help to you.

Because I am living in Spain, at the moment they are still very strict in medical buildings over here about not letting anybody inside the building other than the patient and their interpreter. I have left many an appointment at the hospital in tears due to feeling so vulnerable and unsupported. This is usually not like me at all. I hate feeling vulnerable but understand that it has to be that way over here. They have security guards on the doors of all medical buildings and they only let you in if you have the correct documentation to prove that you have a right to enter. They do not under any circumstances take into account that you may need support 😉! It's all very clinical!

[Sophiestree in reply to Elispeth]

Gosh, that must be difficult for you. I am so sorry.

[Elispeth in reply to Sophiestree]

It is what it is really. But I do have to say that the medical care here is second to non. The hospitals, doctor's surgeries and medical centres have all kept going all throughout covid. They are now fully up and running. When you go to the doctors with something here that they are unsure of, they don't try this and that out on you for months and months. You get an appointment within 6 was at the hospital. You get a diagnosis and treatment plan fom a specialist there and then. They are unbelievably efficient and very good at what they do. It would be perfect if only I could speak the language fluently.