GCA temporal arteritis : Hi my name is BOb and i... - PMRGCAuk

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GCA temporal arteritis


Hi my name is BOb and i have been put on 60mg pred been on it for a week My symptoms were severe head pains i describe as a nerve pain and a head ache all left side temporal area my gp put me on 60mg pred did a blood test and seen me 3 days later i had inflamation in bloods he asked how my pain was after 2 days of pred i said that the headache was vastly reduced but the spasmodic pain was now a 6/10 where as before pred it was a masssive 10+++++ for the pain my problem is that i am still getting the spasm pains and they can occur 5 to 20 times a day lasting for up to 30 seconds a time but then it leaves me with a head ache in temple area although not a bad head ache a pressure type ache that is there . There are times when i feel brilliant pain free and stress freeand these times can last for hours and its a great feeling of calm and well being . It says online that the pains should go with pred treatment but mine obviously have not yes they have been significantly reduced but the nerve pain even though reduced is still quite bad it also says that if pain symptoms persist after a couple of days then its likely to be something else my concern is what else my doc has asked for appointment for temple biopsy and he has contacted the rheumatology hot line which i assume is fast track and i am waiting to hear from both of them Has any one else had pains in first week are so after being on 60m pred with temple arteritis GCA

16 Replies
DorsetLadyPMRGCAuk volunteer

Hi Bob,

Welcome to the forum, sorry to hear about your GCA diagnosis. When I was diagnosed three years ago, I started on 80mg. But I had already lost sight in one eye (long story). I did still get pains in my throat and jaw at that level, but as you say, nothing compared to previously. After 2 weeks, when Ophthamologist (who originally diagnosed GCA) was happy that eyesight in my good eye had been preserved, I was reduced to 60mg. I did still get some twinges for a few days, but by about week three the Pred had really kicked in and all pains went!

You don't say what your blood readings were, obviously high enough for your GP to react as he did. Although he has requested biopsy, now that you have started Pred that's a bit of a waste of time, because the Pred will have reduced the inflammation by the time it's done. A biopsy really needs to be done before Pred is prescribed, but obviously that leaves the door open for blindness to occur, obviously something that can't be risked! Bit of a catch 22 situation really!

Anyway, now you are on Pred things will improve pain-wise, and your sight will be okay; however (sorry there's always a however) on such high levels of Pred you are likely to get some side effects. Afraid you just have to cope with them as they come along, but remember we are always here to answer queries etc.

Unfortunately, it may be difficult to explain to friends and family who know nothing about this illness how you really feel, and it can be quite isolating at times, but everybody on this site has been through it, so please don't feel you are alone. There are people from all around the world on here, so just log on and you'll find someone to answer, or just listen.

Try and find as much info as you can about GCA, for your own peace of mind. I'm sure others will answer your post with links to various papers to read etc. good luck.

bobless in reply to DorsetLady

Hi Dorset lady im glad to hear that the preds kept your good eye safe and that you are pain free nowadays although i do realise there are many side affects to taking high dose preds i had this about 3 years ago and was put on preds then after a routine blood test showed inflammation it was reduced though by 5mg weekly and the dose was 40mg to begin with i went for biopsy weeks later which was negative not surprising as you say even the doc said before he did biopsy that he did not expect a result of positive it left me alone and i was ok after a while and came off preds now its back with avengence i also suffer with copd and ischemic heart disease i realise that information is not round every corner about GCA temple and im glad of this site and thankyou for your help im not sure what elevation in blood readings was i did not ask he just said high inflammation the pains go into my eye and across forehead and downside of temple my left eye feels sore although my sight is ok i have noticed i keep taking my specs off to clean them a lot its like a bit fudged at times the pain sometimes goes into my right eye but not often at all once again thanks Dorset lady

I have had GCA symptoms for 2 years whilst taking low dose Prednisolone. I was officially diagnosed in March this year, but unlike you I cannot be treated with high doses due to the length of time on low dose Pred. I completely understand the spasms you refer to and the feeling of pressure at the temples. I have to try and manage my symptoms whilst continuing low dose of Pred. I continue to work as I'm Only 49, and on busy days the spasms can come quite frequently. One pain that never goes is the burning in my temples, it feels like a match is being held there.

As I say my experience is different and on the higher doses these should be much less. I did have a biopsy but 10 months after being on steroids, so it was negative. I was eventually diagnosed with a duplex ultrasound, but there are only a few centres doing them. Wishing you a trouble free recovery. Runrig x

Hi Runrig 01 thankyou for your input my heart goes out to you workin with this disease you must be a very strong person my doctor has just rang and told me to reduce preds from 60 to 50 tomorrow and then reduce by 5 mg a week i will be glad when i have been to see rheumatoligist i feel i will get to know properly there i had this 3 years ago and biopsy was no good and negative then probably due to preds i had taken x

I am a strong person and let nothing defeat me, that's not to says it's not hard. Some days you don't want to struggle out of bed to go to work, but I have great colleagues who help me a lot. Good luck with the reductions. So you had symptoms 3 yr Ago and negative biopsy? Wonder if you did have then and they just didn't find it. Too many Drs dismiss GCA if biopsy is negative, it has been a hard 2 year struggle for me to get my symptoms taken seriously, and I'm a healthcare professional. I do worry about people who just agree with the specialists advice and don't question. Take care x

Good on you for not letting it defeat you I hope some day soon you see the back of it you Deserve to . I am like you with regards to Drs dismissing things out of hand without a proper full investigation x

Hi Bob: People a lot more knowledgeable than I, have responded to you. But for what it's worth I also had continuous pains for many, many months after starting on Prednisone. My worst pain is in the arteries on the sides of the nose. Sometimes the pain shoots from there through the eye into the temporal arteries and then the scalp. Sometimes they just shoot up the temporal artery. Sometimes the back of my brain seems to pulsate against my scull. Sometimes I have pretty bad pain in my ear. Sometimes I have sharp pains in my cheekbone near the nose. I felt especially the nose pain almost all the time for many months when on 60 mg., then 40 mg. then 30 mg. also in the 20s, 15s, certainly in the 12s, 10s etc. I got the disease in April, 2013, was diagnosed in November 2013 and still have it. On 60 mg and 40 mg. I also coughed constantly and when in the north could not get warm. Old writings hereon talk about people always having some almost daily twinges (30 second shooting pains) in the temporal arteries, and so they tapered very slowly anyway. I think that it's a matter of degree. You don't want your arteries to be injured. But you can't stay on 60 mg. for very long. Re: Biopsy: Even if the doctors do not find a giant cell, they can look at the condition of the artery and diagnose a vasculitis (an inflammation of the artery). Then they try to figure out which vasculitis it is. Most of the vasculitae (Sp.?) require Prednisone anyway. Some US doctors say that it takes more than 14 days for the Prednisone to eradicate all of the giant cells. And no doctor worth her salt will let you go without the Prednisone in order to get a clear diagnosis--think about DorsitLady losing her vision. If they think you might have GCA they can't get you on 60 mg. or 80 mg. or 40 mg. of Prednisone fast enough. In short, until about 2 months ago, I had some head and face pains almost daily. My vision keeps getting worse--but it's always correctable. (I had let myself get terribly sick before getting diagnosed. I spent way too much time with an Ear, Nose and Throat doctor.) However, since then the pains have reduced to having very few--on only one or two days a week. Incidentally I now feel GREAT! I was told that I was very sick when I got diagnosed. I wonder if you start out with months of serious pain, then the shooting pains seep through the Prednisone. (DorsitLady had the most horrible situation. I think that one of her first symptoms was blindness. This is unimaginably wretched.) But on account of the fact that after so many months I feel somewhat well, I have hope for myself. The wellness came on very suddenly. In December I was so sick I went to the hospital. So remember the wellness can come on you suddenly, as well. I hope that this dissertation helps you. Sorry it's so long.

bobless in reply to Asbeck

HI Asbeck wow you sound very much like me symptom wise i also get pains at side of nose when i press there that goes straight to my temple And pains from temple go into my eyes i am reducing to 50gm tomorrow then 5 mg a week after i really need to to see a specialist i do not think a biopsy will do any good cos i have been on preds which gives a false reading i had a incident 3 years ago and it was negative then doc who did biopsy said before he did it that it was pointless due to being on preds . I cant wait to go rheumatology i expect i will get answers there this all started about about 2 months ago i started feeling very tired and was sleeping all the time and then head aches started but they were all over the place at first then the pains started in the temple area i went to see the doc he said my blood pressure was high and he doubled my ramapril tablet and i had a chest infection so he gave me antibiotics as well but the pain got really bad horrible pain terrible pain so i went back he started me on preds 60mg and took bloods and i went back 3 days later and bloods were inflamed i did not ask how much inflamed he made appointment for biopsy and rang rheumatoid hot line so docs done his job best he can i just need some answers now off rheumatoid people when i get the app it cant come soon enough Thanks for your reply you have in some way put my mind to rest regarding ongoing pain while on preds I do get some long pain free brakes and when i do they feel like heaven sent a most brilliant feeling to be pain free for a few hours IM glad you are feeling loads better now Asbeck its been a long hard road for you i hope you continue to feel well and make a complete recovery

Have you had eyes checked I developed GCA last September what you describe with glasses used to happen to me in first 3months so trotted of to my normal man at vision express he then sent letter to my GP who passed me on to consultant at hospital this was all done in 5days results eyes OK . It's a long road

bobless in reply to olive2709

I had a new prescription done at beginning of the year but i will take your advise and go to specsave Thanks olive

Yes Bob I was first diagnose in January with PMR ( pain in my neck flu like symptoms, and pain in thighs till I couldn't walk )at first and was on 20 mg pred but when I was reducing my dose I got jaw pain swollen arteries in temple area and severe headaches,

I was admitted into hospital, had positive biopsy and said I had it severe,

I was on 60mg pred was ok for few days but severe headaches started again, they didn't seem to want to increase my dose, but then my sight in right eye went for 15 mins and had 2 more episodes, I was back at hospital and they did eye exam and said it was just temporary, it was so frightening, I feel so lucky, they increased my dose to 80 mg pred so just to say that 60mg might not keep it at bay, best of luck to you


Go to pmr-gca-northeast.org.uk and download and read the BSR Guidelines on the Diagnosis and Treatment of GCA.

There is also a wealth of information on that site, PMRGCAuk's website and with a bit of luck and a fair wind you might just live near a Support Group.

Knowledge is Power.

I had GCA for 5 years, in remission for 4 years and counting.

Be patient Bob. It takes a while for the nasties to go away. I was diagnosed in September last year after being told I had migraine among other thing, and having been treated for backache for months. The backache and stiffness went first, then the migraine like eye symptoms (scintillating scotoma). Then finally the pains in the head. Nine months on I am down to 9mg. I still get pain and stiffness on occasions, and cannot stand for more than about twenty minutes without having to sit, but no more eye symptoms, and I keep reminding myself that this time last year I couldn't walk more than a quarter of a mile without needing to sit down, had to get my husband to put my socks and tie up my boots and was scared to drive as the scotoma would strike at any moment. Interestingly, I was having sight problems before the scotoma started, similar to what you describe. I kept removing my specs to clean them as I thought they were smeared. In the end I went back to vision express for an eye test. My prescription had changed and significantly they were unable to get a retinal photo of my right eye. The optician thought that there was something wrong with the machine! When I finally got the the Urgent Eye clinic after some bad blood test results they found that my right eye had seriously deteriorated and was close to being lost! Thank goodness they caught it in time.

Hi Asbeck, sorry about what you are experiencing. I also am diagnosed w GCA, biopsy pMine y SED rateven, 2012.

One of the rheumatologistsyosnme research and written some research papers. He believes GCA can be biopsy-- diagnosed after you have started on the Pred. So, would believe, it is probably worth doing. The other problem , which is well documented on this blog, is one area of the temporal artery may be inflamed, while another may not, so you may not get a true reading.

The high C reactive protein, is I believe, a strong marker for GCA, SED rate also.

My SED rate has been normal throughout. Most of us, on the post believe the symptoms should be a strong marker.

Best of luck and I hope you are free of pain, soon.

As the symptoms resolve, a pred taper should follow. There is a schedule, posted on this blog, which is pretty good and effective. It is one of the better ones I have followed. The taper can be difficult. Reading the information on pred helps. The blog helps also. GCA is rare and seeing many rheumatologists don't know really what they are dealing with. Many have searched, until we found one, who does and is compassionate and open minded.

It seems that you are through part of the worst and your sight is there. Good luck and healing.

all my best to you, Whittlesey NYC

Hi Asbeck, sorry about some of the first few lines. Using some voice recognition. And it really doesn't recognize my voice well. apologies.

Hi Bob, this forum saved me back in March. No question was unanswered and I felt really welcome. One thing I did as soon as I was diagnosed was by the book by Kate. I forget her last name but everyone else will know.

Anyhow it really was a massive help to me and you can get it from Amazon.


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