Diagnosed GCA one year ago. Tapered steroids to 5mg from 60mg. Recently things gone pear shaped.Joint pain with soar throat and severe toothache.Same symptoms I had in beginning concerned the devil is back.
Contacted rheumatologist assistant two weeks ago no one got back to me. Phoned GP at least five times a day ,automated response no appointments. Don't know whether it's safe to increase dosage? Please help.
Seagu11
To have got fro 60 to 5mg in a year is far far too fast - and yes, I'd suspect you are finding the pred is no longer enough to manage the symptoms (which, after all, is all it is doing).
I personally would say it was safer to increase the dosage than not. Especially if your doctors are too rude and ignorant to return your call and answer the problem.
Where did it start? At 5mg? or sooner? If it were me, I would try 10mg and see how that goes. If not, 15mg.
Majority of people on this forum of the opinion that I have tapered Pred too fast and recommend upping dosage. Finally got in touch with Rheumy
Awaiting bloods result however she was adamant that I should not raise Pred meantime regardless of flare?
Is it possible that advice for GCA (due to added risks) is different from PMR?
In what way? If you have a flare it doesn't matter which it is, you need more pred. And your diagnosis is GCA and that is what you have to assume is flaring.
Once you have sorted this blip out I would be looking for a better doctor who returns patient's calls and takes flares seriously.
It surprises me that you have tapered so quickly, presumably on the advice of your rheumy? I was diagnosed with GCA and PMR on 31st July 2016. I started on 60 mg of pred per day. I've been on 10 mg for two months now and my next rheumy appointment in at the end of February.
It's outrageous that you've been ignored both by the hospital and your GP. They must know the possible outcome of GCA. My advice is to go A&E at the hospital where you see your rheumy. Give your patient number or take your last letter from your rheumy, and insist that you need to see somebody from rheumatology as you might have had a flare up of your condition. I did this twice when I had a flare and I was given blood tests and my eyes were tested. I was advised to increase the pred on both occasions and on the second (just over a year ago) was also prescribed methotrexate. There is some controversy on the forum about mtx, but I think it has helped me to taper. I haven't had a flare since.
Hi,
“concerned the devil is back.”
Sorry to disillusion you, but the devil never went away. It doesn’t, there is no cure for GCA, it goes into remission on its own accord, but when it is ready to. All you can do is take the Pred which controls the inflammation caused by the underlying GCA, however it does nothing for the GCA itself.
Plus it usually lasts a lot longer than 1 year! Mine was 5.&years, norm is at least 4 years.
You have tapered very quickly and have gone past the level of Pred you need to control that inflammation which is produced every day you have the GCA. You need to go back up the level that controls that inflammation, unfortunately you may not know what that is.
10mg may be enough, and you should know after about 5 days if it is. If not not you may need to go higher, but at least at 10mg you should get some relief until you can contact your doctors.
Obviously if things get any worse, and you get no response then you need to get yourself to A+E (if in UK) or ER(if elsewhere).
Meanwhile have a read of this -healthunlocked.com/pmrgcauk...
Good luck
I remember the time four years ago when my rheumy signed me off saying I was now in remission having been on predisolone for two years. At that point I did not appreciate there was no cure for GCA. Two years ago I had a relapse although both my CRP and ESR were within the normal range. Now, after another two years on predisolone I'm wondering if it has gone into remission again - but how do I tell?
You can't really - except by stopping pred slowly and waiting to see if the symptoms return. That's why life with PMR and GCA is a life with tapering pred!
Ditto to PMRpro’s reply. That’s why we say follow a slow taper - if you’re lucky then you’ll find when you get to zero the GCA will be gone - but there’s no guarantee!
I felt my GCA had gone about 6 months before I got to zero - just felt “different” -but decided I’d continue my taper anyway.
Fortunately for me it had gone!
Are you saying you could just stop like that without the tapering if you knew for certain it had gone? I understand if you are lucky enough to be treated by the Nuffield at Oxford this can be confirmed by ultrasound.
No I wouldn’t recommend that.
I had been on Pred for at least four years when I got the feeling GCA had gone. I was also undiagnosed for 18 months prior to that - so 5.5 years in all . As I said I continued to reduce slowly - so in total 6 years from 1st symptom to last tablet of Pred.
Plus during that time, once on medication I never had a relapse, flare or whatever you want to call it - so maybe not exactly typical.
But if you are at the Nuffield you might be told that PMR only lasts 2 years and if it is longer it isn't PMR and must stop pred. Don't know if he thinks the same about GCA.
And no - you can't just stop without tapering, it depends what dose you are at and whether your adrenal function returns OK. Below about 5 or 6mg the tapering is as much to allow them time to start production of cortisol again. You can't just stop pred and assume the adrenal glands will immediately make cortisol - the body is dependent on having cortisol available to function properly. Without enough you can become very unwell, even dangerously so. Pred fulfils the role down to about 5mg, below that the body must produce a top up.
And what I forgot to say was that possibly you could have u/s to say the GCA was gone. But that presupposes that the GCA affected the arteries they can access with u/s. So you would have had to have had a positive u/s originally in the diagnosis. GCA doesn't affect all arteries equally or evenly and may never have gone near the temporal artery - it is only used because it is convenient, not because it is always involved.
As I know to my cost!
I feel I have a lot in common with you where the GCA is concerned. Mine started the same year as yours. What I cannot remember is whether I was having some problem with reading at times in the summer which I ignored. It was not 'til after a lovely holiday in Italy in the September that I began to be more unwell. Not being one to make a fuss I soldiered on until one morning in November my son insisted on taking me to Aand E. where I was kept in. My CRP being 452 - but it was still another nine days before diagnosis.
Think that is a record for "just" GCA!!!
My CRP was only 26 - just shows how variable we are!
When I read about you loosing your sight in one eye it makes me realise how lucky i
am because I kept loosing my sight on the ward and kept telling them about it. They kept asking where the pain was. I said I haven't got a pain I just feel terrible. I took paracetemol and one sister would not give it to me. On that occasion I was on the point of getting a cab home when I finally got it. After that I kept my own supply. They kept me a fortnight.
Actually nowadays it’s not a major thing, yes there are certain times when it’s a nuisance more than anything - see my viewpoint below - but overall it is what it is!
My arthritis pain (latterly greatly improved with knee and hip replacements) has caused more problems with maintaining my lifestyle as I would like it.
healthunlocked.com/pmrgcauk....
I admire you so much. Also the way you have accepted the loss of sight. I stood against Gordon Brown in the 2005 general election and stood next to him when he gave his speech. (He won!!) He lost sight in one eye in his teens. He had his speech in large black felt tip pen. I was very impressed with him too.
I don’t think mine nearly as bad as his. At least I have very good sight in one of them, don’t think he’s has.
I think you are right he nearly lost his second eye too. I believe it all started when he was kicked playing rugby and spent several weeks lying in a darkened room. His other eye was saved by a brilliant young eye surgeon at the Edinburgh Royal Infirmary.
My GCA was originally 6years ago confirmed with a biopsy. Complicating the situation I get migraine with aura and have particularly sensitive blue eyes. At times I don't find it easy to separate which from what. At the moment I am on 1mg of predisolone.
Not sure I understand "u/s" when I re-read your note. Can you elaborate please?
The biopsy I had was done by my right ear. My rheumy wanted it that side because it was my right eye which kept loosing vision.
I wonder where he learnt his anatomy relevant to GCA!!! Loss of vision is not necessarily to do with blockage of the temporal artery - it is GCA affecting the blood supply to the optic nerve in a region of the brain situated at the back of the head, the occipital region, the posterior ciliary artery. Obviously you can't biopsy that and the temporal artery is only used because it is superficial and you can manage without it.
Very interested in what you have explained. Is that why my head was so sensitive at that time that I could not bear to put it on the pillow?
That is a typical GCA symptom - probably due to poor blood supply to areas of the scalp and the temporal artery is one involved so it was a reasonable instruction to biopsy that side if you had scalp pain there. There may be enough blood supply for it not to be painful unless you lie on it and reduce the blood supply even further.
I too think you have tapered your pred much too quickly as PMRpro says go back up to 5 ot 10mg of pred to see if that helps. As you have probably been warned any eye sight changes then go straight to A&E and it’s a good idea, as Marijo says, to take your letter from your rheumy with you. All good wishes.
I can't add more to the sensible advice given by those above Seagu11! That is one hell of a rapid taper! Certainly one that I couldn't achieve! 20months GCA myself. Started at 40 now holding on 10 for the last 6 weeks. Take no risks with your eyesight. ATB
Borrow my gp's advice and get the symptoms back under control as the damage the inflammation is doing far outweighs the side effects of pred. Go up and good luck xx
Totally agree with all the advice given - I was diagnosed with GCA August 2016 started at 60mg, now on 7.5 and have had to hold that for 4 months as I know that the dose was only just enough and will probably stay there for another couple of months.
I would insist on seeing a doctor and then a Rheumatologist, a lot of GP's are not experienced enough to manage GCA correctly, and I would definitely increase the dose to a minimum of 10mg - you have come down massively quickly.
Hope you get the help needed very soon.
Hi Seagu11
I would agree with PMRpro and increase to 15 mgs. Then go very slow to 5 mgs over almost a year. Or start with Actemra at 15 mgs and go a bit faster. With Actemra my wife dropped 10% from 20mgs every three weeks and now at 5 mgs and holding until her Adrenal glands recover.
Best To You,
Jim & CJ
Amazed you have gone down to 5mg so fast, I tried that and have had 2 flares in first 18 month, now a sensible Rhumey has told me to take 5 mg for 6 months. I am nearing the end of this, stiff and sore and tired but haven't had a flare. I am 2.5 years into GCA and at the end of this month starting the slow slow taper 1/4 mg per month. This time no-one will rush me, I have the stockpile to Pred to make sure
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