What time of day do you take your preds

I think if I were you I'd try first of all to alter the time of day taking pred, and see if that works for you, before trying a split dose.  Just easier if the single dose works.

Absolutely - I'm one of the people who can manage fine on a higher dose but on alternate days, i.e. stopalternate days nothing! It would help of course if doctors understood that everyone really can be that different!

just few days ago I had a "project" that took me 6+ hours of hard labour. That night I was so exhosted that I forgot my late nihgt dose ( 2.5mg). In the morning it felt stiffness and muscle pain. I took 5mg ( 2.5 that I missed + 2.5 for morning) and by late afternoon I was back to normal. Everyone is different.

I presumably am a 36-hour reduced inflammation person and you are a 12-hour one!

The other factor is that I may absorb 90% of my dose - and you only absorb 50%. This is a pharmaceutical measure, the "bioavailabilty" and applies for various medications including warfarin and pred amongst a lot of others. That is why there is no real fixed dose to recommend, you either take plenty (as in short courses of pred) or you start with an average sort of dose that works and then "titrate" the dose to get the desired result. 

I don't think there is anything that will rule GCA out or in that a GP could do with a stethoscope. Even high standard ultrasound is still relatively uncommon - though it does work.

Something that often is found in an inflamed artery is a lack of pulse and tht would be easier to identify with a stethoscope - but it isn't that specific or easy to say one way or the other. If only there were!

Can you not go to bed and wake? Or have you tried earlier than 2am, before you got to bed? But lack of sleep catches up with everybody sooner or later. If you don't go to bed until 2am - you will need a REALLY long afernoon siesta!

Thank you Eileen, I didn't mean rule out, but whatever MOC is, it is the least my husband can do so as to put my mind at ease!

If it's just a matter of getting enough sleep, I'm fine with going to bed at 2am, and waking at 9 and taking a siesta. But maybe I will try turning in earlier and taking my dose when I wake up for a trip to the bathroom, like suggested on this thread. Yesterday,I remembered I had an acquaintance that had been diagnosed around four years ago with PMR. I called her to ask what dose of pred. she started on. When she answered "100 mgs", I was so grateful that I found and read everything on this site, you can't imagine. What is wrong with these doctors???

I know what you mean about doctors.  I've just met a woman with PMR (diagnosed April '16).  She told me she was put on 50 mg to start.  I checked back with her later to make sure I was right, that the dose was only for PMR, not GCA.  She told me her doctor put her on that high dose so she "wouldn't get" GCA.  She is currently at 30 mg, having tried unsuccessfully to reduce, in 10 mg steps, to to 20 mg.  I feel so bad for her.  And the thing is, she trusts and really likes her doctor.  He is, she said, from Hungary.  Perhaps this is the protocal there? 

As far as I know, there is one international protocol that is proven to be the most successful business and if you and I found titles, and why can't a doctor. Beats me! Here in Spain a lot of ignorance is due to their lack of English. Not even the president of Spain speaks English! They are working on it and the younger docs are better and read in English but are still taught all the old school concepts. My acquaintance was not diagnosed with GCA, and only PMR. They are either really afraid of prednisone or overly aggressive with it. But my main complaint is that they don't want to learn anything new. I love having my perception changed, the Spanish docs I know do not.

You crack me up...I hate to break it to you, but they speak Spanish in Spain . "lot of ignorance is due to their lack of English" should be "lot of ignorance is due to my lack of Spanish".

I think that is a bit patronising nick. In case you missed it - Mimi lives in Spain and has done for a very long time. Her husband is a Spanish medic (who DOES speak English) and I imagine many of their friends are colleagues in the medical field. I also imagine mimi speaks Spanish - just as I am a native English speaker who speaks the local language, German. What mimi says is perfectly true.

I hate to break it to you - but any scientist/technologist or medical scientist who cannot at least READ in English remains very ignorant of what is going on in the world of science/technology and medical science. Almost all research work is published in English - all the major journals are in English and if you go into a science or medical science lab in most non-native-English-speaking countries you will find that the working language both there and at international meetings is ENGLISH. Not because the native English speakers impose it but because it is the lingua franca - the one language they all speak, whatever country they originate from. The most common language in the world is English spoken as a second language. I regularly attend meetings with people from all over the world - and we all speak English together. Those whose English is not good enough sit there with the presentations and discussion sailing way above their heads. And bring work to the meeting that is replicating what others have done before - because they are unable to read and understand previous work. 

I, too, have a similar problem with some of the medics here - the rheumy and medical specialist here both speak excellent English and go to meetings and read the English language publications. My GP speaks school-girl English - I discuss medical stuff with her in German, and tell her about research in PMR that she is not able to read.  I've offered her copies of the papers, she admits they are no use to her. She is a rheumatologist.

Many universtities now ask their PhD students to write their theses in English - because they know that if it isn't in English it will be put on a shelf, never read again and never cited in future work - no impact factor. Fifty years ago my husband was told to study German so he could read the physics research he needed to know about. Thirty-five years ago he went to work in Germany - and had to fight to be able tolearn German, everyone wanted to practise their English. Ten years ago he starting working with a group in Austria - the working language for Austrians, Germans, Czechs, Chinese, Slovanians, Americans and British is English. It couldn't be any other way.

You are right, I be lived in Spain for 44 years, and raised five children here, yet the older I get, the worse my Spanish gets. I once spoke such good Spanish that people couldn't tell I want a native, and we'll not anymore! I have a recurring, Oliver Sachs type of nightmare :I wake up after a stroke or something and I don't understand the language people around me are speaking. I actually speak two languages, English and Spanish, and neither of which are my native or mother tongues. I was born with Japan, and ("GI Baby)

Sorry, somehow " I pressed send" before I was ready. Have lost a lot of visual acuity in the past few days and my 6"inch screen is no longer sufficient.

As I was saying, I was a GI baby that grew up the first 8 years only speaking Japanese and Russian.I can still speak Russian with the vocabulary of the 8 year old and Japanese is completely foreign to me now... Like not a word.

Funny saying in Spanish that describes my particular situatiin: "En casa del herrero, y cuchillo de palo. " ( in the ironsmith's house, they use wooden knives.

Have you had that vision problem checked out? It's important - it COULD be the pred, but then again, it might not be.

Thanks, Eileen, I didn't feel patronized as I understand where Nick is coming from and I have compassion for Spanish speakers who, due to the structure of their language have a very difficult time learning English. But it sure is causing a huge cultural shock in me these days to have to communicate in Spanish such things as physical sensations, describing pain, and etc... This site is a godsend!

I had it checked but going in again, the Ophthalmologist that saw me did so thru the ER, I told my husband that a regular ophthalmologist won't be able to see if my vision change is due to GCA no matter how thorough the eye exam, right? I must say I'm still worried it may be GCA because I can say that the Classic PMR symptoms are at about 70% but still having headaches, foggy vision and a tender spot on right temple. Tomorrow I'm scheduled for a full monty blood test.. See what that reveals. One thing I've learned to do from here is to be really vigilant at the expense of feeling paranoia but I think I'm on top of it as much as possible. The Bristol paper has been a great help.

Yes I do see where nick is coming from and on reflection "patronising" was the wrong word. But your and my abilities linguistically are actually nothing to do with it. I've translated medical German to English for the last 30 years and more, the language absolutely isn't a problem for me, apart from the fact there aren't always words to convey the English word but that is something else we have to come to terms with.

However, in terms of specialist knowledge about an illness being concerned, the problem is on the side of the doctor who doesn't know enough English to learn about the most recent advances and recommendations. And THAT has been the case for a good 30 years. The status quo is that papers are published in English - and one of the requirements is that scientists and anyone in medicine who wishes to fully participate in their field needs to fulfil is to be at least able to read it. I don't ask my doctor to be able to speak English as well as I do, I do expect them to be able to keep up to date.

Something that always makes me wonder though: for years it was claimed that Spanish was the easiest of the Romance languages to learn. If you could speak Spanish you could then easily transfer to French and Italian. Is it? Spanish is a closed book to me - French and Italian I can read fairly well.

Ophthalmologist - if there is chronic reduced flow of blood supplying the optic nerve it may cause a condition called Anterior Ischemic Optic Neuropathy (AION). This can lead to the optic disc appearing pale and swollen - it can be identified by examining the back of the eye thoroughly with the right equipment. Eye specialists have it, GPs don't. In the UK the optometrists are trained and have the equipment - here in Italy  and Austria I must go to the eye specialist. Probably the same in Spain?

"Anterior ischemic optic neuropathy (AION) is the most common cause of acute optic neuropathy in older age groups. It can be nonarteritic (nonarteritic anterior ischemic optic neuropathy [NAION]) or arteritic, the latter being associated with giant cell arteritis (GCA; often termed temporal arteritis). AION is characterized by visual loss associated with optic disc swelling of a pallid nature, sometimes with flame hemorrhages on the swollen disc or nearby neuroretinal layer, and sometimes with nearby cotton-wool exudates. Visual loss is usually sudden or develops over a few days at most and is commonly unilateral, although second eye involvement may occur later. The visual loss is usually permanent, with some recovery possibly occurring within the first weeks or months. Optic atrophy of varying degrees ensues within the next few week as a result of the hypoxic episode and is usually generalized but may be sectorial in NAION."

If there is acute stoppage of the blood supply to the optic nerve you would have visual symptoms including partial or total loss of vision - then it MUST be a medical emergency and you go to A&E and insist on being seen/taken seriously. Amaurausis fugax (as it is called) can also be the sign of a stroke - which is also a medical emergency - and they shouldn't waste any time. High dose pred immediately may still save the vision - but it must be high dose and used quickly, preferably i.v.

Eileen,

I am not native English speaker, as you can tell probably in my posts. However, after living ( not visiting) in 4 countries, I don't expect locals to speak my language, quite the oposite.  I do speak several languages and yes, you can get by with English in most places, but I would not trust important topics to someone's elses English knowledge.

While English may be a languages of choice for conferences and scientific (or engineering) corespondence, it does not prevail in everyday communication.  If I am talking to a doctor, I will not gamble if he/she knows English "good enough" to communicate subtile symptoms with me, I will bring professional translator along.

Ironically, Spanish  is more widely spoken language in the world then English. Neither is #1,  Chinese is.

Mimi, I happen to live at the moment in Japan. When I have routine exam, I use English/Japanese, hands motions, etc. but when I went to Doctors for PMR diagnosis, I made sure I had professional translator with me.  Don't gamble your health and diagnosis on someone else's high school English knowledge - it is too risky.

Actually - no, I wouldn't necessarily identify you as a non-native English speaker from your posts, your English is excellent, better possibly than some who claim to be native English speakers.

But that wasn't the question - the comment about many Spanish not speaking English was NOT for the benefit of the face to face patient contact. Of course if you choose to live in a country you should be able to communicate at a reasonable level in the local language when you go to the doctor - that's why I live where I do and not in Tuscany. This is an autonomous region of Italy where the legally recognised official languages used are German and Italian. I speak German as well as and better than some locals. And I have explained to locals what someone was saying to them in Italian!

I,too have LIVED in 2 different countries besides the UK. I spoke/speak the local language, I wouldn't have it any other way. Even when we visit other countries we try to make sure we know how to at least say please and thank you in the local language - and in my husband's case, "One beer please"    But having visited dozens of countries over the years I don't think anyone would expect us to speak every language. 

But in order for doctors to keep up to date in their field the research information is available in ENGLISH. There will be local language textbooks for the fundamentals - but the expert level publications and books come in English. If you cannot read English you will be left behind. And there has been resistance to that in Spain. That's what what we were talking about.

Thank you, Eileen, for yet another master class. I had a bone density test done today, and. The technician that did the test asked me who was treating me for the PMR, she said she hoped they knew what they were doing with the steroids as today's reading was considerably worse in my hips and spine compared to the test done less than a year ago.When I told her the name of the rheumatologist, and she immediately changed to a whisper and said to get anothee rheumatologist ASAP. He must be notoriously rude or something... He is also the head of the department which makes it futile to remain in the same department with another rheumatologist. I have an appointment with the GP on Friday and hopefully she will give me a quick referral to a new rheumatologist.

Ah ha. Well you have it on good authority I think! Possibly not so much rude as lacking in clinical skills - but they can't say that. Why I don't know, it puts patients at risk. That has been a problem in the UK as well in the past.

In the meantime - are you already on calcium and vit D tablets? Have you had a vit D level checked - yes I know you live in Spain. That has NOTHING to do with it. Get it done asap - if your bone density has deteriorated that fast there is maybe a reason for it. Very low vit D can add to PMR symptoms and is easy to rectify - with high dose supplements, not with sunshine!