Well after being on prednisone since Oct, , 2016 , diagnosed origninally by GP, put on 40 mgs, and after over 6 years of treatment, slowly getting down to 4 mgs for last 3 mos, I now am having symptons appearing to be GCA related. I was on 5 mgs for probably almost 2 years, with not a lot of serious issues, some discomfort time to time, with osteoarthritis, at times hard to tell i PMR or osteo. but actually since fall of 2021 started from time to time to have some mild issues, kept on 5 mgs up until saw new rheumy at first of this year. At that time he suggested I try and continue tapering, as I couldn,t take any other anti inflammatory med,s for osteo, and back problems while on prednisone, also started to have more problems with IBS last Dec, 2021, have had IBS for years, Been at 4 mgs now for about 3 mos, but about 5 weeks ago or so, had almost 2 weeks of severe groin,and thigh pain, couldn,t sleep, rheumy sent me for MRI, and result showed couple small tears in tissue around the hip/ball joint, and also showed tendonitis front and inner thigh, and bursitis in hip, dr prescribed T3,s for pain, and after couple of weeks did settle, So now, about a week ago, noticed scalp, skull, jaw tender to touch, bruised feeling, so contacted rheumy, on thursday past prescribed increase pred to 25 mgs pred, and arranged ultrasound for temporal arteritis , which I am getting on Monday. So, I am a little anxxious, worried, but wondering after all these years, eventually possibility of having GCA, why??? could it be because of taper to 4 mgs, markers never raised for years until bloodwork last week, crp and esr raised first time, could it be coping with more stress than usual? and had 5th covid shot middle of NOv, and flu shot over week ago, could any of these things lead to the state I am in now, also, will the 25 mgs of pred, I will have taken for 4 days at time of ultrasound, affect the results ?realize long text, wordy, but wanted to communicate details , so anyone out there would understand my whole story, thank you
Ultrasound for possible temporal arteritis - PMRGCAuk
Ultrasound for possible temporal arteritis
It is unlikely the reduction in dose CAUSED GCA to develop (if it has) but it possibly took you to a dose that wasn't enough to manage the inflammation that was already going on. Something similar happened to SheffieldJane who had been on pred for PMR for years but GCA/LVV appeared as she got to a lower dose of pred.
Stress does make PMR/GCA worse - and there is a theory that stress can be instrumental in triggering the autoimmune response that causes it.
Lot of questions there we probably cannot answer -
GCA and PMR may have been controlled enough by a really low dose - it depends on the nature/activity of your particular illness - unfortunately as many of us know it’s not always textbook,
Return of symptoms/or initial GCA could be due to -
*Too low a dose for disease activity
*Reaction to vaccines
*Other health issues you described
You may never know why, and hopefully increase don’t affect ultrasound.
thank you
PMRPro is absolutely correct. At 4 mgs of Pred I was not feeling right and a subsequent ultrasound scan showed the tell tale halo signs in the arteries of my left armpit. I was put on to 40 mgs of Pred and given Actemra that enabled me to swiftly reduce to 10 mgs. I have been reducing gradually since then and am on 5 mgs of Pred currently. The PMR/GCA/LVV disease has been active for 7 years. The GCA has not spread to my temporal arteries or aorta and I am glad it was spotted. I have regular eye checks at my well equipped optician privately, for peace of mind. Signs of Temporal Arteritis, Glaucoma, Cataracts etc will be picked up early. I can no longer take Actemra because of gut issues, but it did it’s job. My health took a dip following my 6th Covid Booster.
how long were you on Actemra?
About a year, with breaks for infections. Just under the maximum time for patients in the U.K.
thank you
did you have the ultrasound for temporal arteritis? or whole body ultrasound, curious how they dIscovered in armpits, and were you put on high dose, 40 immediately, with symptons, before you had ultrasound, my rheumy has only prescribed 25 , started Friday morning past, and get ultrasound tomorrow, when you say you didn,t feel right, what symptons were you having then, no scalp tenderness or jaw problems then?
The brachial artery which supplies the arms is often affected and in the armpit is close to the surface making it accessible for u/s, They need to be able to compress the artery using the probe to be able to see the halo sign.
My symptoms were flu- like with an almost constant headache. No typical scalp tenderness or jaw problems or eyesight issues. The ultrasound was concentrating on my temporal arteries but involved my armpits too. It was after the abnormal cells were spotted that I was put on 40 mgs of Pred. I have had ( since) a whole head PET CT Scan, tests on my Aorta and a whole body MRI. My Rheumatologist is very thorough. I am on 5. Mgs. of Pred currently. Good luck with your scan, let us know.
I am in US. Why does UK limit you to a year on actemra? I was on it for almost 2 yrs, weekly for 1st yr, then tapering slowly over next 10 months. Just wondering if there are side effects for taking it long term and that is why UK limits it to 12 months.
No, no it is a decision based purely on cost. People with Rheumatoid Arthritis here can have Actemra indefinitely. I cannot justify the decision, it has only recently become available to GCA sufferers in the UK. Hopefully there will be scope for flexibility in the future. I know of a number of people for whom it was a very successful drug.
Not entirely cost no - according to NICE personages at least! When I asked them they claim they weren't provided with the required documentation for longer term use. The clinical study used it for a year, NICE say they don't have safety data for longer use - despite the fact that it is used much longer in RA,
Thank you for your response. Just read study that showed that actemra treatment efficacy peaks at between 1 -2 yrs. Also read that UK is considering extending its time to allow actemra to be taken beyond 1yr. Hope they do. My rheumy said data so far has shown less relapses in those taking actemra for up to 2 yrs.
My GCA was confirmed by biopsy, with rheumy saying results were most "unequivocally" positive he's seen. I have been off all meds and symptom free since Apr of this year. Very grateful to have access to actemra for as long as needed.
I was very disappointed not to be able to continue due to significant GI symptoms.
hi Sheffield jane, you may have answered this already, but Im asking again, what is actemra, not familiar with that med here in Canada, and what is it used for. Also, with being on the higher dose of pred, did you still have significant GCA symptons, and what were they, may I ask, had my ultrasound yesterday, be 4th day on higher dose 25 mgs , mostly head hurts in morning on waking, sometimes later in eve little achy,
hoping rheumy gets results and calls me before he leaves on thursday for Christmas
Tocilizumab -a biological drug -
see DorsetLady’s helpful link.
My symptoms were not the typical, unusual headache, jaw pain whilst chewing, tongue pain, blurred or double vision. I just felt generally unwell and as I reduced from 40 mgs to 10 mgs of Pred with the support of Tocilizumab/Actemra, by self administered injection.I experienced no withdrawal symptoms. My GCA has not affected my temporal arteries. If you are finally diagnosed with GCA your doctor ought to discuss it with you.
That is what NICE says - not enough long term use documentation. Though whether that would be any different for GCA than it is for RA is questionable! They did get a bit sniffy when I asked them face to face 
I understand where you're coming from as I've been on Prednisolone for 12 years and had PMR for 13 years. Initially I was on 15mg of Prednisolone, but was told to reduce dosage in order to prevent any adverse side effects from the Pred. I did this slowly as I was advised to, but when I reached 10mgs, I suddenly developed GCA symptoms (blinding headache, tenderness of scalp, etc) and was immediately put on 60mgs of Pred per day for a week.
After that episode I quickly reduced my Pred intake back to 15mgs per day once more, and then very slowly reduced my dose to 10mgs again. This time nothing happened (Phew!) so I continued with my reduction, but as soon as I reduced to 9mgs per day the GCA hit me like a ton of bricks. So it was back up to 50mgs of Pred this time to stop the GCA.
Since those early days I've managed to very slowly reduce to my present level of 4mgs per day, and am in the process of reducing to 3mgs per day (as advised by my GP). However, I am still mindful of the effect reducing Pred had on me twice before, so I am doubly careful now when attempting to reduce my dosage.
The thing is that Pred reduction in my case prompted two bouts of GCA as a form of withdrawal symptom, and I strongly suspect the same is what's happening to you. So if it's any consolation, you're not the first person to suffer from a GCA flare up linked to Pred reduction, and I'm sure there will be others as well.
All we can do is follow the prevailing advice, which is to increase our Pred dosage to prevent any damage from the GCA, and then be very careful about reducing our Pred afterwards.
Best of luck, oh, and I hope you and yours have a Merry Christmas, and a Happy and Healthy New Year!
oh thank you, yes after starting to taper from 5 to 4 mgs over 3 mos ago, have had other issues, tears in tissue around ball and socket hip joint, groin pain, tendonitis, bursitis, and femoral nerve involvement, that did pass after 2 weeks, but didnt relate to taper, but now after 3 mos, started over week ago with tender scalp, bruised feeling, and jaw tightness , hoping if this is GCA the 25 mgs prescribed will help it settle down, and not suffer any more serious problems, thanks again
Hi Arvine,
My story is very similar to yours. I came off pred in August this year ( after 3 years) but shortly after starting getting the aches and exhaustion from suspected PMR returning. ESR up to 40.
Then I started getting a slight not severe headache on one side of my face and around my left eye. With slight intermittent discomfort around my jaw. I was sent to A and E for tests and although GCA was suspected nothing was confirmed. I was put on 60 mg of pred which I have been taking for 12 days now whilst waiting for a pet scan. I can only take the 60 mg for another week before dropping to 40. The scan was ordered as an emergency but no news yet.
Please let us know the outcome of your scan and good luck x
oh does sound familiar, well my rheumy only prescribed 25 mgs of pred, which took for last 3 days, and I am booked for a temporal arteritis ultrasound, tomorrow at 11 am, is that the same as a pet scan? I am a little anxious, having read what this could develop into, my blood markers were raised for first time in years, when I had them done a week ago,
By this stage it is probably pointless - any pred suppresses the signal and above 10mg makes it useless.
?? not sure what you mean "it,s probably useless", do you mean after 3 days of 25 mgs pred, the ultrasound rheumy booked for tomorrow is useless?
and all the best to you , my rheumy did act quite quickly when I called about my new symptons, but I am still wondering, why he only prescibed 25 mgs, when so many I see with suspected GCA are immediately put on 40=60, as I said, I am going for ultrasound tomorrow morning, and he told me he would be in touch as soon as he received results, and of course this will be a short week for him, with Christmas in few days, so hoping he contacts me in a timely manner, so I can know what,s going on with holidays around corner, it is rather a worry, hope you get in for your test asap, let me know how you do as well, thank you
Please keep us updated Jlml and arvine! My best, I'm an old GCAer with just one flair and have found reducing by .5 mg every 4 weeks has little impact on my body. It is less and less each time.🤞🏼🤞🏼 💞
Hi Grammy,
I had my scan yesterday so awaiting results.
GP also rang a couple of days ago to say that my bloods from last week have come back much better. ESR had dropped to 7 from 40 in 10 days of taking 60mg of pred.
I dropped to 40 yesterday and have asked rheumatologist what and when I can drop again. Not sure I will get an answer to the New Year and that’s a bit late !
I really don’t want my body to get used to these high steroids as I found it so hard to come off of them last time.
Any advice would be greatly received on reducing these high doses safely.?
One more question please. If my ESR has dropped that quickly does that suggest PMR as opposed to any diseases.
Prednisone is a curse and a blessing! So glad your ESR dropped but we have to say thank you PRED. It is apparent the need was there the way your body responded. Protect your sight and don't rush...it isn't worth it. When it comes to GCA, prednisone isn't a crutch, it is a savior; as problematic as it may be....temporarily. With you💞
well Jimi, had ultrasound on Dec 19, as I said, markers were raised, believe ESR 55mg, rheumy increased pred from 4 to 25 mgs, he was going on holidays as of Dec 16 , but assured he would call with results, which he has not, I have called, spoke to secretary, she said rec,d results, showed "normal"?? but he would call to discuss, since then, stayed on 25, now 2 weeks, pain above eye, jaw etc, were in mornings, slight headache on and off, am very worried and upset, that maybe the 25 mgs not enough to control inflammation, also, how could results show normal?? unless the dosage of 25 was enough having been on that for 4 days when actually had ultrasound, so I am still calling his office, secretary said he called on tuesday past, but gave him cell number too, and didn,t get the call, and then said was calling yesterday, thursday, but no, that didn,t happen, Im frustrated and a little worried,
Hi Arvine,
Is there some medical number you can call for advice meanwhile.
I have caught covid over Xmas. Spoke to Rheumatologist who said to stay on same dose but did offer anti-virals if I need them in the next couple of days. Hopefully I won’t but we will see.
Let me know how you get on. Sending virtual hugs
Hi JImi , rheumy finally called today, upped me another 15 mgs,so that,s 40 a day, for the next week, faxed blood req to lab, and req for MRI, get bloodwork done mid week, and wait or MRI clinic to call, have appt with rheumy next Friday, phew, also said, get appt with eye dr, although, so far I have no blurry vision, thank goodness, he,s just being cautious I guess, so hopefully, increase for week will reduce pain and inflammation, I do notice, the scalp, jaw, eye, and temples, are more severe on waking in morning, and have been taking 2 extra strentgh acetaminophen, sorry to hear you contract covid, hope you will not suffer too badly, adn will be a mild case, I had mild case DEC 19th,
Good news, glad something is now happening for you.
Good luck and keep us updated.
Thank you. Let’s keep in touch and support each other x
Hello Jimi, well some good news or you , ESR dropped, would mean inflmmation decreasing, are you feeling any better .Im hoping my rheumy calls me today, or at very latest tomorrow before he leaves for Christmas holidays. I have noticed , even although I am on 25 mgs since Friday past, that my head hurts on right side,and above right eye , for while in morning on wakening, I do take a tylenol(acetominaphen), then have my bkfast and my 25 mgs. Another, weird little thing Ive noticed, may not be related whatsoever, but on and off notice tingling in my right leg , not severe enough to feel it, down to my knee, strange sensation, wondering if your symptons were/are similar,
Hi Arvine,
Sorry to hear you are not feeling so good. Hopefully your rheum will have some news and plans for you soon.
Up to this weekend I was still having discomfort particularly around my right eye, temples and jaw but that seems to have settled down now. I can still feel a little around the eye normally when I am tired.
Funny you said about your right leg. I thought I had twisted it slightly ( although don’t remember doing so) . It felt numb on one side ( mid thigh to knee) but once again has now cleared.
Let me know how you get on.
thanks Jimi , well yes,leg doesn,t hurt, just strange tingling sensation on and off, little weird, yes, Im still wondering if rheumy prescribed a high enough dose to settle down inflammation, hoping to hear today, or latest tomorrow, before Christmas, will be in touch if any news, in meantime, hope you continue to improve, and hope you have a lovely Christmas, not too much discomfort, tty soon
well received a call from dr,s secretary, he is going to call me tomorrow to discuss results, but she said were "normal"?? so will be anxious to know why my ESR, and CRP were flagged as high? now already wondering what else it could be, and all my symptons seem to fit suspected GCA,, and will mention weird tingling sensation in right leg, had blood work done in October those numbers were fine,although "aminotranserase" ?? at that time flagged high, have no idea what that is, so bit of mystery at this point,
well i, hope you are keeping well, I was suppose to get a call from my rheumatologist on Thursday, being his last day working before holidays,he had my results, according to his secretary, well disappointed as he did not call. His secretary had said, results were "normal"?? and that she would send him a reminder, thing is, I still have slight symptons, and still taking the 25 mgs of prednisone he prescribed a week ago Friday past, so when went for ultrasound, would have taken 25 mgs for 4 days at that point , I am wondering if because of that, the inflammation in the arteries, for the temporal arteritis ultrasound, had been affected , reduced, and therefore did not show on ultrasound, At any rate,, I am frustrated and anxious , will continue this dose and know he is not back in office until Jan 2, very disappointing not to have heard from him before Christmas, just a little more added stress to cope with , and Christmas Day tomorrow,
Hi Arvine,
so sorry to hear about your rheumy. So frustrating although good news that it seems to have come back clear 🙏. I haven’t had my results yet either (scan was last Tuesday) and I was taking 60mg for 10 days beforehand so not sure anything will show but we will see. Mine was a ct-pet scan though not ultrasound. I assume they are different.
Try and have a relaxing Christmas and feel free to message if you need a chat.
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