Hi again,I had contacted you all last week to ask you advice about a possible PMR attack. The pain was addressed at 15mg, but I started having those dreadful headaches in my temples/jaw/neck, etc and had been icing my head to get relief. I moved up to 20mg to try to address this as I suspected that this is a full on flare. I took an additional 10mg last night to take my total to 30mg. (My new doctor put me on a week's works of 20mg as I am booked into see her on the 12th May. (Not quick enough to treat what us going on) I spoke to my doctor this morning to ask if I could be prescribed 40mg to treat this flare, and she says she has given me enough (20mg) to treat what I have going on, and I have now have now been sent to the absolutely packed A&E by the doctor. She says I need a CT scan on my head...which won't show anything as I am on 30mg and I should have been sent for a PET scan earlier, in my opinion. I am in a bit hampster wheel and going around in circles. I don't think they'll help me here. They're going to think I'm highly disturbed by the time I get to explain what's going on.
Is there any advice how I should tackle this? I will probably be here for around 20 hours at the very least and feel so poorly
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Feathercraft
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Sounds like it could be GCA from your description and should be considered. A CT scan is usually done and is sensible to rule out other issues and Pred won’t affect all of these. Have you been triaged yet? If so, what did you say and how do you think they have categorised you?
I understand what you're telling me, it's just when they last gave me the CT scan results, for the same senario the doctor was very rude to me, inferring that I was wasting their time. I suppose I am being defensive, and I'll have to calm down a bit. I won't get anywhere with this attitude.I will just have to wait to see how everything unfolds.
Sounds like the fault of the doctor not the CT. It is really difficult when one is scared and feeling like you are not being listened to; I know from personal experience a number of times. Trying not to come over like you’re deranged is really hard when one is so het up. I’ll be controversial here, but being female doesn’t help. Rather than focussing all your energy on trying to get a GCA diagnosis after you’ve mentioned it, concentrate on asking why they think this or that and get them to explain their logic for any course of action or inaction.
Yes, you are right. I'll try not to overstate why I think I'm experiencing such awful symptoms, I'll let them attempt to ascertain for themselves what is wrong. I know that this will hopefully go towards sorting the whole thing out. I no expert, but it seems very much like it. I need bringing back down to earth as I do tend to take the reigns if I think nobody is in charge or has no idea about the situation. Sometimes this can be a good thing, but not in the medical realm. Thanks.
He obviously hadn't learnt that our generation rarely over eggs the cake and will do anything to stay out of the ED! I hope he never meets farmers - they'll say their pain is a 3 out of 10 when half their ribs are smashed!
Hear, hear! My dad was a farmer and all his life never went near a doctor unless he was pushed! Farmers are much too busy to be "wasting" their time sitting for hours in A&E. He used to blame all his aches and pains on the weather.....God rest his soul.
I have been released today with my questions as to what I actually dealing with here. I was told by the consultant that I was on way too much pred for such long time, that he suspected this has stopped my adrenals from working. I am horrified but I am assured that I will be seeing an endocrinologist to see if further down the line I can replace pred complely with a steroid helper. (Can't remember the name of this, but I had never heard of it). He also said that they way this has gone has been very detrimental toy overall health and he had some dire warnings too about using them again if possible. They will have a chance to establish a proper diagnosis this way. I'm on 30mg for two weeks, then dropping to 10mg each weak until I reach 10mg. Then to stick. (Or the nearest I can come down to). I was truly stunned today and I thought it was a stark warning for everyone else too, as well as myself. Steroids and not to be messed around with or extend high doses are to be avoided at all costs. I will come back to all of you lovely people to update you all.Thank you all so much for your support and sorry for the lack of clarity here. I have been awake for over 2 days now.
If you're in the UK, please enjoy the coronation and the long weekend!
Consultant in what? Scaremongering? Of course your adrenal have stopped working [temporarily] - anyone over 7.5mg for more than a couple week do - but that doesn’t mean they will never work again…
I was on very high does initially for GCA and in total for over 4 years … mine are absolutely fine now - nearly 7 years on from stopping Pred.
We all know steroids aren’t to be messed with, but sometimes we don’t have a choice not to take them… and his comments are OTT - have a good rest - and come back to us when you feel able…
I agree with DL and Snazzy - not the brightest of info for a patient with potential GCA, And I really wouldn't listen to a endo about management of GCA - the only "steroid sparer" that will replace pred in GCA is Actemra, neither leflunomide nor methotrexate replace pred, They MAY allow patients with PMR to get to a lower dose, for a few they may get them off pred but that isn't common. but there is no indication for the use in GCA,
The CT scan is not only to look for GCA but also to rule out other causes of severe headache, Your history is rather confused and it has been ruled in the past it ISN'T GCA so they probably do need to start from scratch. CT scans for most things aren't affected by pred.
Has the GP sent you with a referral letter? The triage will only be interested in the severe headache and what the GP has referred you for so if you are lucky you will be moved up the queue of severity as severe headache can be a sign of a bleed or a stroke. Hope you took a good book!
No, the nurse who booked me in said they hadn't received anything from my doctor yet, as its not in their system. I was never formally diagnosed two years ago, but my doctor suspected that it was GCA right away just from all of the symptoms. He put me on 40mg of pred right away and didn't arrange any testing to confirm this. I think this is the single biggest factor that has caused a lot of confusion. I had no idea then what I was dealing with. I call it the Catch 22 illness.I have told them that these steroids will only last a few hours, so I will become really poorly fairly soon and will haveto lie down.
I did bring a book with me as the last time it was a 20 hour wait, and the queues are extremely long.
The Welsh government has closed all of the A&E hospitals around the area and consolidated them into one hospital...for many thousands of people. We are all in the same boat.
Stupidity embodied that - she should have called or written you a letter to take with you. There are ways and ways of dealing with things. And your original doctor should have referred you as an emergency - if it is ?GCA it ranks alongside a heart attack or stroke.
Nothing to add to other comments, except to say, hope they get round to you sooner ...and have you got someone who can bring in anything you may need if required..
How are you getting on? Is there anyone that can come to you in the hospital and bring food and drink and / or your medication? I’ve been in that situation of being in A& E for 13 hours or more, as time goes on I know I got quite annoyed and anxious that no one was taking me seriously.Of course as you say that doesn’t help the situation. Try to remain calmer and adopt Snazzy’s strategy.💐
Let us know how you get on. I went through a similar thing with A&E myself in December. If you want to amuse yourself (and your phone battery lasts long enough) give the thread a read. I'll post a link when I can find it. When I was first diagnosed my GP referred me to the Urgent Assessment Centre. It took all day, but I came away with GCA diagnosis even though it was just based on blood tests and my symptoms as none of their equipment was working to test my eyes. So yes, I agree a referral from your GP would have been useful.
I hope you have been seen by now by someone more sympathetic than last time. Even though my diplopia had cleared by the time I saw a consultant, she said I had done the right thing by coming in.
Went to ER here in Nova Scotia on May 3. Low back and pain left side. I also have PMR. I told them it was possible cauda equina (which is very emergent) and since I'd lost control of my bladder (with no sensation to go) the day and night before, it was a possibility - not a lie. I do have PMR and I had a GCA scare in January. That got me a complete work-up. I spent 8 hours in the ER on May 3rd, but got a complete work-up including CT of abdomen and back. Turns out I have diverticulosis, not infected. Doctor had maniuplated my legs and now I am in wore shape and can barely move. The pain continues and is worse this morning. I may have to go back. Please - get the tests you need. All the best to you.
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