Flare up????

[Poll8]

Hi, Hope you are all keeping as well as poss, especially in this heat!l Will try to keep this brief..apologies if it's a bit convoluted. Was on hol in Yorkshire Dales this week. Started with what I thought was a flare 3 days in..headache, stuff neck, slight jaw discomfort, weepy sore eyes, sore joints & retching. Put some of it down to extreme heat. Headache got worse each day (never had headache in life before this) started base of skull moved up to back of head, then top, then forehead. Unbelievable exhaustion, so after 3 days suffering decided to come home. No A&E near site, home was closest. Upped pred from 2.5 mg. ( for last 2 months) to 5mg. as soon as headache started, no relief. 5 hr. journey home, went straight to A&E. 4hr. wait for triage & was told minimum 4 hrs before could see doc. & delays on bloods...I was in tears with exhaustion and decided to come home..big decision I know, but could not sit on plastic chair with no arms for another 4 hrs. at least. I won't go into the trauma of trying to get a telephone consultation with GP..was absolutely refused even though I said it was emergency. Left message with Rheumy Secretary re symptoms. Husband phoned surgery and went mad..finally doc rang at 5pm. Upped my pred to 40mg.immediately and arranged emergency bloods next am. Bloods came back everything normal except raised inflammation markets 60..should be 35. Rheumy phoned & told me I was on right course of treatment and made me appt. to see her in 10 days. Thought it as more likely to be flare and sun stroke more than GCA. Day 3 of 40mg. Felt quite a bit better yesterday but headache came back during night, very very slight jaw ache back, very stiff neck and tiny vein by my right eye seems ever so slightly raised. Got less than 1hr. sleep last night. At last here is my question..how long before I should start to feel better & should I be doing anything different? As usual..thank you so much for listening and just for being there with all your help & experience. Marie

[DorsetLady PMRGCAuk volunteer]

You may need best part of a week at 40mg to see significant improvement if it is GCA….so stick with it. But obviously if you get any sight disturbances then higher dose required…..if you really can’t face A&E then at least ring 111 for advice, but they will undoubtedly say attend A&E, unless you have enough Pred to increase dose yourself (with their approval).

All you can do is rest as much as you can, and try not to worry too much - know that’s not easy, but stress won’t help.

I would hazard a guess it’s was sunstroke initially which then made you flare……but it may well be GCA. Do what you are doing, but monitor things without being paranoid, and if in doubt seek medical advice….

Please keep us in the loop, and fingers crossed

[Poll8 in reply to DorsetLady]

T

[Poll8 in reply to DorsetLady]

Thanks for a quick reply. I guess like most people here GCA is our biggest fear. When I was first diagnosed the pred kicked in immediately, so I suppose I expected the same result in such a big dose this time. Phoned A&E this am. Approx 7hr. wait to be seen..will do as you suggest and just keep an eye on things. Not sure if inflammation markers of 60 is what to expect with flare or high enough for GCA..still not enough experience to guage this yet. Grateful for advice..will try to calm down now..Thanks

[DorsetLady PMRGCAuk volunteer in reply to Poll8]

With my GCA it took about 2 weeks for 80mg to kick in completely to get rid of headaches- but different scenario all round - so don’t take as the normal…but can only tell you what happened to me.But give it a few more days- and you know what to do if necessary. Hopefully it will improve without further intervention.

[Poll8 in reply to DorsetLady]

Can deal with symptoms for as long as it takes, as long as I know it's working....even slowly. Needed that bit of confidence

[PMRpro Ambassador]

There is no "high enough for GCA" - up to 1 in 5 have markers that are "in normal range". In fact, ESR should be under 20 - 35 is a very old-fashioned figure. I honestly don't think heatstroke would result in a raised CRP (or ESR) as CRP being low can be used as a marker for HS.

Where in the Dales were you? Probably your best action would have been to dial 999 - Yorkshire ambulance paramedics are trained to recognise potential GCA and at least York and Scarborough hospitals have fast track set-ups in A&E so I imagine most do.

[Poll8 in reply to PMRpro]

Hi, so new to this I had to look up the abbreviations 🤔 and I see what you mean by the numbers being a bit out of date to use. Because I am still learning & have already made one mistake by pushing to taper my pref a bit too fast, I am trying to listen to the "professionals" and follow their advice, while still trying to rationalise if it's the right decision for how my body feels....this disease is hard work on the brain as well as the body 😊We were near Hawes meeting up with my sister, who by coincidence lives near Filey, if I'd known about Scarborough, I could have stayed at her house to sort this out.

Called 111 who told me nearest A&E was near Leeds & minor injuries only..too far opposite direction to home in Cheshire. You live and learn.Thanks to all for advice today, feeling a little better, but just resting up for a few days.

Enjoy the rest of your w/end everyone

[PMRpro Ambassador in reply to Poll8]

I know about York and Scabs because my daughter works in Scabs A&E and was telling me about the GCA path there. York is better as it has more equipment but Scabs refers to York. Yup - it's all hardwork - and even more so since Covid. My daughter lives in Whitby - she says Scabs has been relentless recently. The other weekend there was a 12 hour wait to see a doctor. If you feel ill it is the last place you want to be!

[Poll8 in reply to PMRpro]

My sister's has GIST cancer (lower intestine) very rare, she has her consultations in Hull and her scans & bloods in Scarborough...praises them both highly

[SheffieldJane in reply to PMRpro]

I did that ( called in the exemplary paramedics ) with an oesophageal spasm but treated for a suspected heart attack. I was left on a stretcher in A&E for hours, triaged as low risk I guess. The pain went off and I went home after about 6 hours. The only examinations and aspirin administered by those wonderful women in the ambulance.

[PMRpro Ambassador in reply to SheffieldJane]

Presumably the paramedics had done an ECG that didn't show anything and someone took that as gospel. Did they at least take a blood sample in A&E? Trouble is, it all depends on how many bays they have and how many with equally potentially urgent symptoms. And how many chancers - like the one who attacked my grandson in A&E yesterday ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Hope grandson is okay….life’s difficult enough for staff in A&E without being attacked…

[PMRpro Ambassador in reply to DorsetLady]

Another nurse noticed what was going on and screamed a very unladylike warning so several people jumped to help. No damage done - physically at least. Who knows psychologically - just getting to the end of the second year of a very strange training ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

…enough to put him off! But sure he’s made of sterner stuff - if Grandma's anything to go by 🤣😂

[PMRpro Ambassador in reply to DorsetLady]

Nothing to do with me - step grandson. But heavily influenced by his wicked stepmum

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

ahh...the fairy-tales are true then!😉

[SheffieldJane in reply to PMRpro]

Yes they did an ECG and followed all the cardiac event protocol, including something that made me sick. Nobody said so much as hello in A&E. Not blaming the A&E staff, they can only do what they have the resources for.Good heavens! What happened to your grandson? How shocking!Was the perpetrator a drunk? The chancers should have to pay.

[PMRpro Ambassador in reply to SheffieldJane]

Don't know any more details yet. I have my own views about what should happen in A&E with a lot of the weekend patrons. Like a marquee with campbeds and volunteers for drunks to sleep off their excesses under supervision - for a charge donated to StJ and Red Cross ...

My daughter said the other weekend they didn't stop the entire 12 hour shift and the wait times for a doctor were 12 hours ... The not stopping is standard now, the waits aren't usually quite that long. But it all backs up - no room in the ED means patients are waiting in the corridors, still n the ambos and the ambos can't go back out on the road and a chunk of pre-hospital medicine is missing in terms o transport but also mopping up the shortfall from GPs.

They will have done a troponin, it will have been low and decision made: not cardiac.

[cycli]

Poll8 I'm on 40 mg for PMR and GCA. Have been since 13th June. Only just cleared any slight issues with GCA so don't expect a quick clearance of inflammation. felt like a basket case at first. If it's just GCA don't know, but given PMR responds quicker to pred. and my marker was 176 I expect mine would take longer than yours to suppress. Good luck.

[SheffieldJane]

What a frighteningly stressful time. It is really scary that there seems to be no safety net in some hospitals. If it is GCA it should be treated as a stroke where every moment counts. It is going to be a tough call to make the right decisions, in the winter when so many viruses are around with similar symptoms. I have had a pain in my neck and the back of my skull, in my ear and throat, with a tender scalp only on the left side - utterly exhausted too. Sticky eyes and blocked nose.No jaw pain which my Rheumatologist was previously very interested in - jaw claudication and eyesight disturbance as a defining symptoms. I was diagnosed without those symptoms last yearGCA/LVV. At least you are safe on 40 mgs and may need more if the headache persists. My symptoms are more recognisably, like a cold now. My fear was touch and go - stress of travel - car seats - unfamiliar beds - draft from the window. Who knows? I hope your symptoms settle, you are right to push.

[Poll8 in reply to SheffieldJane]

V@

[Poll8 in reply to SheffieldJane]

Very interesting reads, so many people going through so much angst.My symptoms are persisting, headache starts about 3am with neck pain, gets gradually worse until about lunchtime then starts to go off...so much better sfternoons...is that about right? Tried to go out for some fresh air yesterday, couldn't cope with the drive..our potholes roads are a disgrace! The only good things are that my very swollen ankles have gone right back I normal and the extreme exhaustion has subsidised quite a bit.

How long do you think I should stay on 40mg. Pred? I was advised week then down to 30 or 35 depending how I felt

[DorsetLady PMRGCAuk volunteer in reply to Poll8]

Long enough to feel better - a week is okay if you feel alright, but you obviously don’t. I would suggest at least 2 weeks…and if no better by then - you need medical advice. Then 35mg not 30mg.

[Poll8 in reply to DorsetLady]

That sounds sensible & along the lines I was thinking.. Don't want my body to get too used to steroids. Thanks

[DorsetLady PMRGCAuk volunteer in reply to Poll8]

No, but you need what you need, particularly with GCA!