Waking up with a ten tonne head!?

Hi Sheila. Thanks for sharing. Before PMR diagnosis I did get the jaw pain quite often, up to the ear, but since steroids it's stopped. I didn't even realise GCA existed until I googled PMR, my doc didn't mention it or give me any info, so I'm assuming the jaw/ ear pain was linked.

The banging head does clear, I drink plenty & use cocodamol 30/500 which was originally prescribed for migraine & the morning back pain, it still works as only have a couple a day.

Thanks for the advice re diabetes too!

How much pred & what pain relief works for you?

This is a "lordy" moment - someone on another forum says they know it means I'm not amused 

ALL patients with PMR should be told the symptoms of GCA - because 1 in 6 patients with PMR go on at some point to develop GCA.sometimes it is soon, sometimes it is much later. But it happens. And whatever ANY doctor tries to tell you - no, a PMR dose of pred does NOT protect you from developing GCA.

I, too, had jaw pain for a while - and scalp tenderness. But it actually went away on its own - and has never returned since I've been on pred. But it is there, lurking. Never forget or ignore it if it happens.

My doctor didn't mention GCA either.  When I showed her the tapering plan sent to me by pmrgcauk she started to ask me what the gca meant, then caught herself and said giant cell arteritis.  Perhaps had never seen a case of it, maybe your doctor the same?  My ophthalmologist, whom I saw on my own initiative, gave me a far more detailed outline of pred and GCA than GP ever had.

I wonder how many doctors do actually tell the patient about GCA when they diagnose PMR. I learnt about it on this forum. How many people have lost their sight as a result of a lack of knowledge? 

Good question.  I looked up PMR on the internet and that of course enlightened me anbout GCA.  Up to this point I have to say my doctor has given me very good care for PMR but she has proven a dud for every other issue I've raised with her.  At last appointment I gave her a copy of the new book, a collection of research papers, edited by Dasgupta and someone else I forget who.  She seemed very pleased!

It's good that your doctor is open to gaining more knowledge from a patient. There are so many who can be quite arrogant. I think some of the younger, newer GPs see it as more of a partnership which can only be progress.

I am tactful.  I went to her with the slow taper plan to ask her opionion and she agreed it would be fine to use.  She's not so responsive when I bring up things like erratic heartbeat, painful legs, bad shoulder, etc. Perhaps if she treads the book she'll find out that PMR patients are vulnerable to issues like this and the next patient will get more than "I'm not worried about that" when they ask.

typo: "reads" not "treads"

 

I am not always happy with my Rheumy, but she did discuss GCA with me and goes over the symptoms on each visit. So I can not complain about that!

My Rheumy would not even discuss DSNS Anhaga. It was her way or the highway. She knows it all! I guess I just dumb, but I learning a little more each day. Keep smiling! 🙂

Dasgupta and Christian Dejaco - who is the new regional head of rheumatology at my local hospital, he is from about 10km down the road! Haven't met him though - must take the book to get it signed 

Hi Anhaga.

I shall take a leaf out of your book & take some info into my doc next time re tapering methods & advise them I've had the GCA symptoms that no one's told me about.

It took them 10 years to diagnose PMR after they realised I hadn't had blood tests in all that time & those results bought back vit D deficiency, Diabetes, high inflammation markers...

Thank God for finding this site! God bless you all!

Erratic heartbeat? I get this in the evening which I put down to steroids wearing off. Is this normal?

Did you have the arrythmia before starting on pred too? I have atrial fibrillation which was almost certainly caused by the autoimmune part of the PMR damaging the electrical cells in the heart that govern heart rate. It wasn't found until a few years ago - but had definitely been there in the early years of PMR so wasn't due to pred which CAN also cause palpitations.

I certainly don't think it's normal.  It was very disturbing to me for a while, which is why I asked my doctor and got the don't care response.  I have ended up consuming a lot more salt and I seem better, but perhaps she'd like to check my blood pressure next time I go in?  She never does, only time was when I complained about the skippy heart and she listened for about ten seconds.

Anhaga, I may over do things, but when I check my blood sugar I also check blood pressure and oxygen level. They always do when I go to the doctor so I do, record the readings and have them for the doctor. Last week she asked me what was my lowest reading and I showed her.

My 2 cents worth. Keep that smile on my face! 🙂!

Well not all of us have the wherewhithall to check things.  i can't quite imagine myself owning a bp machine!

Anhaga, at one point I had a unit like in the doctor's office, it is in a drawer somewhere. I now use a unit that I put on my wrist very small and cheap, my doctor wanted readings for another problem. The wrist unit is just as accurate.

Still smiling 🙂

Ah Michdonn..coincidentally I checked my bp today on my mums machine..it was much higher than usual & pulse was a low 50. I checked online to discover steroids cause BP to rise. A few hours later, when pred wearing off presumably, it was back to normal. Is this something to expect? Many thanks smiley 😆

Oh same as you, I get a rushed 7 mins as it takes 3 to print the prescription...I read today that steroid users should have BP taken regularly?

Probably, since pred can raise BP - and it doesn't matter what the cause is, raised BP should be at least monitored and probably managed.

Hi Eileen. Yes had the arrythmia for years & never got to the bottom of it after much testing so just learned to relax & try to ignore. But has been much worse since starting pred & always the same time every day.

I had no idea PMR could affect this. It could explain alot as been going to the doc with same symptoms for years, although I'm told PMR is for over 50s? I've had symptoms since 35.

Sars77, BP reading change quite a bit over the course of a day, mine are normally the highest first thing in the morning, lowest after a hard exercise. My doctor does not seem to be concerned with my readings, she is concerned with my BS reading, which we hope will improve as I reduce the Predinisone, they were a little better Monday. Still smiling hoping for the best! 🙂

There are a lot of people who realise they have had symptoms for a long time! But pred does tend to make things worse in some people. It needs keeping an eye on - so it doesn't get worse without being noticed. 

EileenH, once again you are 100% correct. I am surprised to find the some of the medical medical field is not relating to their patients. I have two doctors, one I think walks on water. I will say no more!

Still smiling on my journey, hoping your husband's journey is a smooth one! 🙂

I've always had rather low bp, which may be why my current doctor hasn't paid any attention.  But given my increasing age, nevermind pred, I think it should be taken at least once a year if not every (quarterly) visit.  

Sounds like you need it.  I am really bad at even weighing myself, which is why it was such a shock when I discovered how much weight I'd lost pre-pred.  I had thought for years that sizes were getting bigger!  Turns out I was gradually losing weight, and it was a comment by a friend that I looked like a refugee from a famine (by then I was well into the undiagnosed PMR journey) which made me think perhaps I should stand on the bathroom scales.  A few weeks after that it was apparent even to my oblivious self that I was into a catastrophic weight loss and I was able finally to get a doctor and a diagnosis.

Anhaga, when I was younger, one time I went to give blood, my pressure was Soo they would not take it. Shortly after I bumped into my doctor, told him, he accompanied me to moble Blood Wagon and told them to take 2 pints I had more than enough! I had stopped in after a bike ride and my pressure was too low!

Smile on my face. 🙂

Anhaga, gained about 20 lbs on Pred, lost about 10 and do not seem to be able to lose anymore. Figure that as the Pred comes down so will the weight! Hope so! Still smiling 🙂

At the moment I am down to 20mg of Pred, Pain relief is mostly Tramadol 50mg twice a day although I can have two at times it is written up for 50mg four x a day but can only take 100mg twice a day.I have also been given Acupan but it's not a great contender.. I have Morphine for my kidney pain bujt it does not help at all with GCA. I am not allowed Co codamol 30/500 or paracetamol as when they found that I had GCA they also found that after a blood test my LFT's were deranged and the on call doc rang me and said he was sending an ambulance to my house to rush me into our local hospital 17 miles away. As you can imagine by the time the paramedics arrived my BP was through the roof. Such a shock so now I have an enlarged liver, I wonder what else can go wrong!!!!!