Went though 111 ( probably should have used 999 ). The 111 triage trafic warden put by blood pressure through the roof.
Managed after about and hour to get an urgent appointment at local hospital becasue of headache and feeling in temperal artery on LHS sligtly enlarged.
Kind of red flag for CGA I have had headaches but nothing specific until now.
I was on 10mg I took another 10mgs while on the 111 help as they were as much help at the time as taking to a chiken that had learnt to be a parrot .
Asked me if I had problems talking at one point when it was very clear I dint not have any such problem !
No vision loss, Now on 40mgs. Blood tests taken will see GP when they are back and will stay on 40mgs until then.
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survivalist
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I hope it isn’t GCA - you did the right thing getting help. I’ve never had much luck with 111 either. If you get any visual disturbance go straight to A & E - you can take additional 10mg until you get checked out. You can come straight back down if it’s not needed but don’t take any chances.
Were your PMR symptoms under control when on 10mg? It can go into GCA if you’re not on enough pred to stem the inflammation. Do you have a Rheumatologist? Let us know how you get on.
Update for interested and hopefully useful for others that might get it in the same way
PMR under control on 10mg was totally fine for 10mg for my PMR, but I started getting these headaches and thought maybe its the prednisolone because I had raised it from 8 through 9 to 10 to limit any inflammation to zero for my PMR .
The headaches started when I started increasing the Pred dose. This I feel was just a lucky coincidence as having a bit more pred for GCA starting is no bad thing but I though it was not GCA at the time I though it was just more pred effect
These headaches were over 3-4 days not in any specific area definitive for GCA headache just a light headache and not that bad no pain killers needed at all not pulsating. Then the last night of these headaches I began to feel something like a very light bruise area on the route of the temporal artery to temple and on the way out of the temple. I keep looking to see if it was getting bigger but its wasn't really doing this.
I didn't quite feel it was bad enough, it wasn't anything much at all.
Next day first thing no headache. But in the afternoon I could feel the temporal arteries.
and then I could see the LHS it was getting larger . I checked the picture on the internet for GCA temples this was the clincher like a game of snap only I didn't actually want to win this game.
Decided this was enough self diagnosis! Time to press the panic button I now felt there was nobody crying wolf here but a real one waiting to come in.
I go out my prednisolone and though of taking another 10mg ie go to 20mg for this day but I started on the phone to 111 first because I didn't know if they would give me intravenous steroids and I held off to see how long it would all take to get a response to treatment.
Why did I do this ?
I Know oral steroids take about 2 hours and frankly without being alarmist the situation was from the onset of the arteries becoming noticeable to me things were developing very very fast indeed. I now had pain in the LHS and I did not know if I had 2 hours before something nasty happened my left eye had a twitch / tremor under it ! Not visual in the eye just like a slight nerviness twitch under
it. ( postscript writing this to day at 6 :30pm I now know I did not have any time to lose at all it was urgent. I can feel my temporal arteries now on 40mgs today I know for its 100% GCA).
I decided if they were not going to see me ASAP ie no emergency appointment I was going to go to 40mg but I did not want to mess up the possibility of an even better course of action ie intravenous so I took the 10mgs eventually as I had planned to do while on the phone.
At this point I'm on 20mg for the day I get a call from the local hospital they say we have an appointment in 20min can you get there that fast. I said yes
Got there a doctor called Mr somebody ie probably consultant of some kind but not rheumatoid as this was emergency out of hours had a look at me . Immediately said this is suspicious of GCA everything fits, no vision issues, not sever, but very GCA we need to go up to 40mg now ie another 20mg and produced a prescription on the spot for a lot more prednsiolone . We got this at the supermarket on the way back.
The sedimentation and CRP blood tests will not be back until Tuesday ( two working days to get it turned round ) and I will be seeing GP and Tuesday and I would reasonably expect to be referred then to a rheumatologist.
I asked is there any point in a biopsy the emergency doctor thought probably not as if could skip and I have been on pred for 2 month with 40mg for a while too he thought a rheumatologist should decide but he didn't think they was a lot to be gained from a biopsy
Sort of it looks like a duck. it quacks like a duck, its a ruddy duck.
I think I caught it early, its definitely there today. I feel it is under control until Tuesday the 40mg is not as high as it could be but then the syptoms are not very sever at all its just definitely there. Anything like taking the dose up to 60mg can be dealt with I hope on Tuesday .
I'm not in anything you would call pain no pain killers at all not even a headache to talk about just a feeling in my arteries . No vision issues at all . I just know it there. I can feel it and you can see something is there.
I can just detect a little something in my jaw . Hardly much at all but again its there no doubt about it.
"Mr" denotes someone who is a surgeon - they study for 7 years to be called DR and then another 6 or 7 years to dispense with Dr and get very huffy if you get it wrong... You were lucky - it sounds as if it may have been a surgeon who has done TABs and knows the lowdown.
If you have no visual symptoms you are probably fine with 40mg - which is, when all is said and done, a good start for the reduction!!
I know, at the meeting, you felt it could be beaten, but this is a b*****d and comes to bite us. It has no respect for our past lives, or our vision for our future.
The advice I was given was to look at 60% being my new 100%!
Very good advice as you know I'm kind of way OTT when it comes to life . I have decided to reduced to 25% for a while as it happens!
Day after the hospital incident I was on duty as Range Conducting Officer in-charge of a firing range ( not kidding ). The big noise cancelling ear phones for the muzzle blasts are NOT compatible with GCA if your wearing ballistic eye protection or any glasses for that matter the arms press on just the wrong place behind the ear protection and the shock waves are more noticeable inside your head than ever before.
So I think 60% is perfect for normal people but in my case I have a feeling its going to have to be loads less.
But lets face it - even at 25% it is an improvement on the potential 100% loss you could suffer as the result of a GCA-related stroke or 100% visual loss that would seriously restrict life...
Trouble is for a man like me it takes a ledge hammer on my nut of a brain for me to grow up ... OK to be fair that's never going to happen but I am now at least listening to Nurses, GP's and my Dr Daughter.
Seriously I do think this is a problem with men they don't go to the doctor soon enough on average for something like a headache even if they have something like PMR and I have heard that men with GCA are more likely to suffer eye problems. I do wonder if this is due to behaviour when they get ill.
As for strokes yep I can see that could happen on GCA my blood pressure went up to 168 / 90 for a while when the hospital thing was going on its normally around 130 / 68. Its back down again now.
I think this is due to the underlying stress of the situation, must chill out even more.
I have just come back from a GP appointment to try to move things on a little without being pushy. She had to phone up the lab for the blood test results. Its been two working days and they were still not at the GP's surgery .
The blood tests were not abnormal C-RP of 12 but I did then remind her I had taken another 10mg bringing that days dose to 20mg only 2 hours before the blood tests were taken on that day.
A consultant rheumatologist has been contacted for possible TAB ASAP. I have to go back to GP tomorrow at 4pm for scripts / paperwork from the GP for the rheumatologist.
I am just trying to do get this sorted one way or another as early as possible before the giant cells get more difficult to find due to the steroids. I not pushing for a TAB but if they are going to do it it needs to be ASAP.
My mate just wants to know becasue I have this PMR womans desease thing am I going to grow bumps on my chest from the steriods ? I told him no, and he says I bet you do.
Sorry you had such a bad experience and I hope you find that it isn't GCA or anything else that's serious. Regarding 111, I've heard of less than perfect experiences before, but I must add that on the two occasions when I called, once for my daughter and once for me, they were excellent - including arranging an emergency prescription for my daughter who had a serious UTI.
The call handlers use a protocol which creates an algorithm, they can't see you, they need the information to decide what is most appropriate. If you got to 999 directly they use one too. Not their fault and it is a very difficult task - they were trying to differentiate between a stroke and anything else because that makes a difference as to which hospital and, therefore, which crew. Depending on what you told them in the first few questions they may even already have started an ambo in your direction which they then stood down. Though I fear it is more likely that it would have been that there wasn't one available immediately...
Always worrying when this happens. I know I was concerned about sight ( which turned out to be cataracts which developed very quickly) and I have already have GCA. I went straight to A& E but wasn’t really treated as an emergency ( have since completed complaint form) They didn’t really “get”my concerns and focused just on blood pressure ( like you through the roof because I was concerned) Good that you are now on 40mg and will be followed up by GP. Are you under the care of a Consultant Rheumatologist? If it’s thought to be to GCA it is best to be referred. Let us know how you get on.
So glad you seem to have things under control Survivalist. The constant awareness of GCA lurking behind PMR is haunting. I've been dealing with it for weeks now having developed occasional headaches for the first time in 5 years. One was particularly painful and came with a high fever (I rarely get fevers), chills and all over muscle pain.
I upped my dose from 10 mg to 15 for 5 days, am now holding at 12 mg and have my toes and fingers crossed, but remain worried.
I went for blood tests this week because of a bad headache and all turned out to ok. I think I was having rebound from a night time sleep aid. I am glad I am educated to know how to take care of myself. I waited to get results.
Sounds like I've had the same as you. I contracted PMR in Nov 2017 and my GP diagnosed it quite quickly and got me on Pred I think starting at 25mg and he had me on a very slow taper. After a fee months I got a hospital appointment to see a Rheumatologist and he just confirmed my own GP and set me on a taper that would get me below 3mg by Dec 2018. I couldn't get this low but was down to 4 but taking hours to shed pain in my arms and shoulders in the mornings and even then for the rest of the day i was in some discomfort So really the pred I was taking was not really enough. During Christmas 2018 I started getting eye pain frequently, headaches and aching jaw when I ate or chewed. At first Anadin extra would kill my headaches abut overy a few days the headaches mergeg together and no over the counter pain killers did anything. It was a weekend close to new year when I did 111 call and after 20 mins of questioning the advisor said she would get me into a local out of hours GP at the local hospital that day. The GP quickly diagnosed me as having GCA. She spotted the raised temporal artery was very sensitive and along with right eye sight degradation, severe headaches and slight feverish symptoms she put me straight up to 60mg. I've been trying to get to see my specialist for my eye problem (as I already have an eye occlusion as well as Glaucoma so I'm taking eye drops now daily. My GP has taken back control and he put me on a taper (with advice from the Rheumtlogist)emy. Anyway cut to the quick I'm now down to 50mg per day but Ive got background GCA pain but most other symptoms have gone. The high pred has taken its toll on me as I find it hard to sleep and the doc has me on anandronuc acid and calcium to help prevent bone density rapid loss. I've got to keep having blood tests every 3 weeks now to check my inflammatory markers. Hate ta king this much pred but my vision is not degraded further, I have little muscular pain and can get on with life. Hopefully I'll get back again to 5mg or less but that is going to take months.
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