PMR since July 2018 and down to 1mg. Enter GCA

[pata63]

My Bio is pretty well up to date, until a week ago. Quick summary of things is: I'm ok, vision ok, diagnosed with GCA, and I've gone from 1mg (nearly done...or so I thought) to 60mg. Now on my third day of 60mg and waiting on new bloods I did today and a call from the consultant tomorrow to discuss where to from here.

Thanks to the information I've learned on here 🙏, I thought I knew what was going on and didn't panic. Just got myself an urgent referral from my GP to the Emergency Department at Auckland Hospital. Lots of waiting. It took an hour and 15 minutes of standing in a queue to get to the window where you start! But as soon as they saw the urgent referral I was moved through to an area for assessment and sat for a time before a bed came up and we could begin properly. In at 6.30 pm and and given the first dose of Pred at maybe 3 AM. Sent home at 8 AM the next day. Not much sleep that night. The ED did well considering they were at 140% capacity. And all the people I interacted with were caring and professional.

No PMR symptoms before the GCA arrived on the scene. I had been watching carefully because I was thinking of starting my next taper. I finished the 5 week taper from 1.25g to 1mg on 7-May. The only thing which I was wondering about is that I had a horrible May with more headaches than usual (left side Migraine without aura, left side Trigeminal Neuralgia). 22 days out of 31. 😕 My GP had me slowly increase my Amitriptyline from 30mg to 60mg during May to see if that helped. I didn't have inflammatory markers done as part of my blood tests because I had zero PMR symptoms and I seemed to be doing fine. So I don't know if CRP and ESR would have been rising.

I had always wondered how I would spot GCA given the frequency and severity of headaches I have. Now I know. I wasn't too good on the evening of the 7th, and on the morning of the 8th the headache was bilateral, I had jaw claudication. I noted that my head hurt at the temples. So much so that wearing my reading glasses was a problem because the ear pieces were pressing on my swollen temples. Worst headache ever.

What I don't know is if I was slow recognizing that something else was going on with all those headaches in May.

Is this the typical onset pattern for GCA in long term PMR patients? It seems like it came on so quickly (4 days to get real serious) and with no apparent PMR symptoms. Was my PMR finished (as I had hoped) and I was just serving my time finishing my nice slow taper? Just curious. I have to confess that I haven't yet gone and reread all the detailed posts on GCA. I'm feeling better now so I can have a look, but I loo forward to hearing your experiences if you have had that transition from PMR to GCA.

Thanks to all the quality info I got from this community, I was in much better shape to understand and maybe guide the discussion a little in ED. 😉 They did CRP (32) and ESR (42) which don't look particularly high but I was able to give the context that my personal normal CRP is 1 or maybe 2. Above 4 means something is going on. When I was first diagnosed in 2019 my CRP was only 23. But for me that is a big spike. I was so well controlled on prednisone that my CRP wasn't out of the "normal range" when I had last been in ED with acute bacterial prostatitis and sepsis. They could check that because the records of previous ED visits are part of my record.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you have GCA -as you say just as you thought the finishing line for PMR was in sight.

Agree that yes the warning signs were there in May, and although you do suffer from headaches, a significant increase in occurrence and strength should have been red flags to GP.. and maybe blood tests should have been carried out as a precautionary measure. But it is what it is…

On that subject, mine were only CRP 26.5/ESR 58 at time of diagnosis and sight loss.

Please do have a look at the GCA info in the FAQs - if you haven’t found them already, but guess you have, as see you have read my saga.

healthunlocked.com/pmrgcauk....

Hopefully if all okay, you will be able to drop down to a slightly less ‘manic’ dose soon - good luck, and keep us updated please - and always around for chat despite the time difference!

[pata63]

Labs just in

CRP down to 14

good early response I guess improves my chances of a taper sooner, although I'm following symptoms not just lab tests given what I've learned here. 👍

HbA1c mmol/mol 38 30-Apr-24 now at 43 (ref range < 41)

might need to get more strict with my low carb diet again

Liver function panel all good

Renal function panel still looking good (eGFR > 90)

If you read my Bio you will see that my kidney function took a hit some years back after my episode of acute bacterial prostatitis and sepsis. eGRF dropped to 72 which is ok for my age, but the drop was worrying because it was unexplained. Ironically my GP referred me back to the kidney guy recently because he wanted a second opinion on my albumin and creatinine levels. I'm still avoiding things which might damage my kidneys. In addition to the 60mg Pred I was given Zopiclone in case I have trouble sleeping. I checked the warnings and they are problematic for kidneys so I'm not taking them until my appointment with the kidney guy on Tuesday. As I pointed out in ED the 60mg Amitriptyline I take in the evening might see me avoid sleepless nights.

[SnazzyD]

oh that’s rough. Hindsight is there to torment as well as inform. It is so easy to explain away symptoms and I think a smoke screen was set up by the fact that PMR was seemingly gone and you were on 1mg. Research and imaging has shown that you can have symptomless larger vessel inflammation. Some people get to the end of their days not knowing and some get an early calling card. It might have been brewing for a while but who knows. As DL says, a GP’s warning bells should have gone off but they went off down a different track, possibly also fooled by the same smokescreen. Inflammatory markers checking would not have come amiss at that stage but who knows if they would have been exciting enough earlier on. However, you got the right treatment in time.

It is good you had educated yourself so you are starting knowing where to look to get up to speed. Welcome to the club again, sorry.

[PMRpro Ambassador]

Hard luck - and a cautionary tale. I, too, think the GP was a bit remiss in not checking markers, they really should be part of ANY standard check. Why not while you are at it? But that is water under the bridge and you recognised the textbook signs of GCA. And the ED DID check the markers and they ARE pretty raised in the context of your history.

The ED did pretty well in the end - but I suspect every ED around the world has a similar overload and that is what they do - get on with it.

[Manihiki]

I have had a similar experience at the ED at Auckland Hospital. I have GCA and when first diagnosed was also sent across to Green Lane Hospital in the night and they checked my eyes to ensure that they were okay. I have monthly blood tests to check CRPs etc. That works well because any raised level my rheumatologist messages me. I am under Dr Ravi Suppiah if you want a good rheumatologist.

[pata63 in reply to Manihiki]

Thanks for this. Did you end up being offered a steroid sparer like MTX? Just curious because a steroid sparer has been mentioned but I don't know which ones are in use in NZ.

Things are moving along at pace. I have been given an appointment with Dr Julia Martin on Thursday the 27 at Green Lane. I've had my follow up call from Dr Peter Storey and we both agreed I should say on 60mg until another blood test Wed the 19th and a call from him the next day to see how things are going. I have apparently been accepted for a temporal artery biopsy at Auckland by the Surgical team but have not been contacted yet. As far as checking my eyes I am to make an appointment at my usual optometrists Mortimer Hirst for an eye examination. They have previous records for me with retina photo and such, so that seemed sensible. I have actually been to Green Lane Eye Clinic before to be checked for GCA in the early days of my PMR (2019) after some visual blurring in my left eye. That included an Ultrasound Vascular - Carotid at Auckland which was negative. I can't find my discharge letter which had the Dx to remember the correct term for what it was. One of several pieces of paper I need to track down in my records or in my GP portal. The hospital record systems are good, but I've discovered that it pays to bring your own copies just in case. I'll be showing up to Julia Martin with my two DEXA scan results (all good) and notes from the Rheumatologist Kristine Ng who I saw privately in 2019. Since then my GP Olivier Caunes has been looking after my PMR with no Rhumatologist involvement.

Other than this slight hiccup with not having a CRP done recently things have gone well. Searching my data spreadsheet I found that my last CRP was 4 and that was 2-Sep-23. I haven't gone back to see what was happening then, but at 4 something will have been going on. Searching my diary for the month of May and first week of June I can pick up a few hints which might have suggested GCA, but nothing definitive. I've got over 10 years of detailed diary entries but it is a fairly manual system in terms of data retrieval. I have done some work on the distribution of days with bad headaches in the past, but I've never bit the bullet and put the data into R to do some proper statistical modelling. I use the year planner diary pages for an overview and pink highlight the headache days. I do know that I've had really bad months in past years.

Thanks to all of you who have replied. I feel well supported.

half year of headaches

[Manihiki in reply to pata63]

After my CRPs went up when prednisone was lowered in the first three months I was put on methotrexate but I was not responding so it was replaced by lefludomide and mycophenolate which made a dramatic difference and my CRPS dropped to below 1 and I managed to slowly decrease prednisone and stop but within three months I developed PMR so the opposite to you! I have had a couple of flares since but only ever need to increase to 10. I had a biopsy at Green Lane but had already been on 80 prednisone for a month and so of course the result was negative. Biopsies are very unreliable as you will read on this forum and my rheumatologist says to focus on symptoms. My rheumatologist is the lead clinician for Auckland, Green Lane and Middlemore and GCA is his specialty field. I see him privately and he monitors those bloods closely.

Hope you respond to the high dose of prednisone quickly as that headache is unbearable. But make sure they check your sugar levels because I got steroid induced diabetes.

[Nextoneplease in reply to pata63]

Thanks for these entries pata63. I have often wondered how or whether I would spot GCA pain as I too have regular bad headaches ( I do have GCA and am now down to 6mg). Love the pink highlighter method and think I’ll adopt it!

All the best 😊

[pata63]

Thanks for the additional info on steroid sparers in use. I know about some of them but haven't paid close attention because it didn't look like I would be needing them.

Good call on the sugar levels. I've been on a no added sugar diet for years (Prof Jim Mann from Otago), and in 2019 was put on an even more restrictive low carb diet when diagnosed with PMR. It is detailed in one of my other posts. In the last month or two I've indulged in a few more apples than I would normally have so I've gone more strict again. I like apples but they don't seem to have kept the Doctor away. 😀

For those who aren't from NZ we have a number of public hospitals in Auckland and they have certain specialties but all have general services. I've never really kept up with all the Government imposed changes in organization over the years, and I used to be a researcher in the Medical School in Public Health and Epidemiology! Too hard. I just did research design and data collection and analysis. Non clinical. Dry stuff not wet stuff, as we say. 😉

[pata63]

Had a great first session with my Rheumatologist. She confirmed GCA by ultrasound and showed me through the images and measurements she was using to do that. My CRP was at 2 yesterday (before the consultation). Current plan

Prednisone taper

40 mg full month (to 20 July)

30 mg 2 weeks

20 mg 2 weeks

15 mg 2 weeks

12.5 mg 2 weeks

10 mg until review

2 weekly bloods

add in Co-trimoxazole for PCP prophylaxis above 20mg. I didn't know Pneumocystis pneumonia was a risk but now I've read up. 😉

add in Omeprazole. I had actually asked her about it before she mentioned it as I was on Omeprozole when I started on 20 mg back in 2019 but stopped when I was below 10 mg or so.

Review at 3 months (or earlier if they spot something in the blood work, or I call them with problems). She asked about the exercise I get, and sounded pleased with my usual regime. Might start back at the gym next week. 😀

[DorsetLady PMRGCAuk volunteer in reply to pata63]

Plan might be a bit ambitious - and remember it is only a ‘plan’.

Personal opinion - 2 weeks at each dose is not quite long enough [it can take that long to know that dose is sufficient before you drop down], 3 weeks would be better. If dose is not enough, or only just enough you might have dropped a few doses before you actually realise you’ve gone too low, and then it’s a bit of a scrabble to get back on track.

You have to see how you go, you might be one of the lucky ones…but listen to your body, not calendar watch… and once you get to 20mg - don’t drop to 15mg in one go…2.5mg at most.

Good luck, and do let us know how you get on.

[pata63]

Update: I've been on 10mg since 15-Sep-24 and have my Rheumatologist follow up appointment in 4 days to review my case. I was doing quite well until 3 days ago when I started to have some temporal pain again. My CRP has been measured every two weeks and it got down to 1 (my usual set point) but two days ago it was back up to 3 which is a sign that something is going on. I'll report back after my review.

[PMRpro Ambassador in reply to pata63]

Experience suggests that 10mg is marginally too low to keep the inflammation under control - but really only marginally since it has taken 6 weeks to build up enough to cause symptoms. 10.5mg would probably be plenty - after a few days burst of a bit more for a springclean!

You have done well though.