I have had PMR and initially GCA since 2013, remain on 5 mg prednisolone still despite numerous attempts to reduce. However over last four weeks have had on and off severe headaches , often waking me at night and this weekend felt the strange scalp sensation plus swelling on left side of temple. Filled in the dreaded online consult form this morning, submitted it and five minutes after GP opened got a phone call to go in this morning.
Has anything changed in the years since I was first diagnosed re treatment for GCA that I should know. I never had a artery biopsy first time round as I had been on pred for two weeks at that stage and was told it would give a false negative so assume after 12 years it might not be needed again. Last time I was immediately put on increased dose 60 mg prednisolone with a taper .
I am pretty shocked this has happened again, if indeed it is GCA, initially I thought it was flu or a strange virus as I had shooting pains up my neck which seemed to resolve. Still hey ho, life goes on.
But would appreciate any inputs on updates especially from my old mentors PMR pro and Dorset Lady .
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Dovelady
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Not a lot has changed to be honest… Pred still first line of defence, you may be considered for Tocilzumab [TCZ] - but unlikely unless you have a lot of issues…. Likewise you may be offered a scan rather than biopsy
Ditto to what DL has said - same old same old, though apparently doctors are a bit more aware if yours is anything to go by!! Difficult to say what might happen - how quickly your area sees ?GCA, there is now evidence that the left-overs of the inflammation remain longer even if the giant cells have disappeared. There is also ultrasound - same applies. If you struggle to taper, you may be offered Actemra/tocilizumab for a year in the UK - hoping for change there - but it doesn't cure either, it is just a very expensive steroid sparer which works 100% for half of patients and reduces the pred dose a lot for the half.
Afternoon, just back from GP, he has taken the usual bloods and fast tracked them, he is speaking to ? haematologists/rheumy re biopsy , will get results later today or early tomorrow and will call me back. Also considering a viral cause. To be further discussed later once results are in.
Haematologists? Wouldn't have thought so - surgeons, preferably vascular to get the sample. Unless he is discussing it with histopathologists about whether it is worth doing - they are the lab that plays with dyes and looks down microscopes to identify the changes in the cells.
Another early call from GP. 0803! I understood every word, he's just a softly spoken Scot.
Short story, he spoke to Rheumys at Hospital to get urgent referral for review and they will discuss a new PMR medication as I have struggled to taper, exactly as you said. Bloods showed elevated inflamm but nothing too concerning. Bp was very high systolic 154, normally I linger around 110 or lower.
Very best of luck to you D,am going through my 3 rd flare at present,2 years in.Like you,funny scalp sensations plus the other stuff.I never had a biopsy,just a positive TAUS.Was offered TCZ at 7 mg but turned it down as I was so low on Pred ,after listening to good advice from people.Also Grammy 80thought she was out of the woods and BANG,got it back again.Cruel disease isnt it?xx💐
Thanks for your reply, it is awful though, I never imagined 12 years ago I would be back here. I added a wee note to PMRPro answers re latest update this morning.
Morning D,yes it is awful.thinking you are out of the woods and then back!Must be much worse for you after SO long.Nothing we can do about it though can we,just soldier on and let the damn thing play havoc with us when it wants to!I had normal range bloods early Dec,but still had all the niggles on 5 tapering to 4 1/2 then within 2 weeks new sensations that worried me.Thank god that PRO and DL were to hand,there was me putting it down to skeletal issues.Within a couple of hours I started to feel relief from the suggested 10 mg ,second day in now but still got pressure in my head and slight neck pain.Hoping THAT will go now.Will try and find your post to PRO when I have done necessary jobs around the house and sit down for a cuppa.Wishing you well D.xxxx💐💐😜
Cheers PMRpro,just read it.Sounds as if she is being looked after and hoping she gets Rheumy appt soon.A funny thing……..jumping onto Doveladys post.Took the increased dose of 10 mg,at 10 pm that night such relief from most of the stuff that was going on,then last night was hoping that I could revert back to my normal time of 2 am,well that didn’t happen.By 930,it all started again so hung it out until about 10 30 and had to take the 10 mg.Do you reckon this will even itself out after a few days or should I split the dose?SORRY Dove lady jumping onto your post!xx💐😜
Difficult to say often it does go back to full 24 hours once you have had a clear out. If you wanted to get back to 2am you could try taking a couple of mg about 7pm to take you that extra few hours and see how that changes things.
Excuse me being thick!!By clear out ,you mean the accumulated inflammation?Is it better to take it at 2 am as we have all been told or do a lot of people take it at night?Would make for a less disturbed sleep but will do what is best for me.SORRY!xx😫
Yes. Unless there is no inflammation you have no buffer zone.
Depends on the dose a bit. For getting adrenal function back, you need as little pred in the bloodstream as possible at midnight. Taking pred at 2am or in the morning ensures that, taking it at 10,30pm will probably mean it is at its peak at midnight. What time do you go to bed?
An alternative is splitting the dose. Take about 2/3 with breakfast and the rest late enough to make sure the effect lasts to the next morning - the benefits of the 2am dose without having to wake up.
Understand it all a bit more nowIGo to bed at 9,settle down at about 10 pm.Got into the habit of taking it at 2 am,,just wished I had waited that first night instead of taking it at 10,just wanted to get it into me asap!Xxx😫💐💐💐😜
Just to let you know that have decided to do the 2mg at 7 pm and go back to taking the rest at 2am.Got into the early hour wake up and going back to sleep, so won’t upset the apple cart by change.Hopefully everything will settle shortly and can go back to normal routine.How glad we have you PRO.Just leaving the hospital with a carrier bag of drugs and not knowing about all these things is quite daunting.Xxxx🏅🏅🏅💐😜
Hi Pro,bit of misunderstanding I guess.But think I will try taking a couple of extra at 7 pm and 10 mg at 2 am just to settle things down a bit.Didnt realise that you meant a couple of mg extra.,….Have a good day,sun is shining,Tesco was quiet and the tea was lovely FULL FAT not decaf!Made a nice change…Many thanks,xx💐😜
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