GCA and headaches: My doctor suspects I have GCA... - PMRGCAuk

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GCA and headaches

dimas62 profile image
16 Replies

My doctor suspects I have GCA but I do not have horrendous headaches just low level pain, tenderness of the scalp and pain in the jaw. I have also had blurred vision but no real loss of sight. Is this still indicative of GCA?

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dimas62 profile image
dimas62
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16 Replies
tomasina profile image
tomasina

Hi dimas62,

Has your GP referred you to a Rheumatologist or put you on steroids? Has he/she done any blood tests to test your ESR or CRP levels? If you have GCA it is important that you get urgent treatment to prevent loss of sight. Please do not neglect this condition. Good luck.

Tomasina

Green_girl profile image
Green_girl

Utterly agree with Tomasina! And you have a GP who is on the ball - wow. I would go with what he suspects, as if you have the tests and don't have it, you have ruled something out - and can look for other reasons for the pains. If you do have it, quick treatment is of the essence. Your sight is so precious - please be checked out for GCA.

Good luck! I do hope you don't have it (as I think most of us would). It would be so much better not to have it. But if you have GCA and you have a supportive GP you are in a better place than some others on this forum.

Green_Girl

Narducci profile image
Narducci

It sounds quite likely you have GCA. Not everyone displays all of the symptoms but it is imperative you get a diagnosis as soon as possible as your sight may be in danger.

Any GP worth his salt should immediately put you on steroids (prednisolone) as a

precaution. Checking the ESR and CRP levels from a blood test will clearly indicate whether there is inflammation, and a biopsy may be necessary.

Do not delay in seeing your GP again and getting immediately referred to a rheumatologist.

All the best

dimas62 profile image
dimas62

Thanks for your answers. Yes I am lucky with my GP! He thought I had PMR and referred me to a rheumatologist who decided that although I had a raised ESR, because CRP was not raised that I had osteoarthritis. My GP was not convinced and when I told him about the headaches etc he sent me to a different consultant. Am now waiting for a temporal artery biopsy but having read other peoples stories, my symptoms both for PMR and GCA seem very mild in comparison and I felt like maybe I was overreacting as I am still able to work full time (in an office environment). I do get terrible fatigue and have to sleep a lot during evenings and weekends though.

lkloster profile image
lkloster in reply to dimas62

I have taken Prednizone since March 2012 and was weaned off and by the end of Aug 2013.I was able to quit. Rheumy kept checking for soreness in temples but none. But I have headaches across the front of my forehead when I cough or sneeze or exert pressure etc. The top of my head gets tender also at this time. I had kidney #'s that have also not been good. I had labs done last wk and see my GP in another wk. I have had CT Scan on sinus. Nothing there. Then I see Neurologist and he said brain looked good. My eye Dr has check vision. I have lost a little but not enough to have to wear glasses. He said my eyes are healthy. Just don't know where this headache is coming from. It is not a normal headache that is there all the time. lklos303

Celtic profile image
CelticPMRGCAuk volunteer

Hello dimas

Thank Heavens for a GP who is at least aware of GCA! However if he suspected GCA in the first place he should really have referred you as an emergency and started you on high dose steroids (40/60mgs) immediately. If your symptoms then resolved by around 75% in a few days (just a few hours for some) he could then have taken that as confirmation. If they didn't didn't improve, then you should still have been investigated to rule out other causes. Better to be on steroids immediately than to risk your eyesight. They can always be reduced and discontinued over a short period in the early days in the event that GCA is ruled out. Also do bear in mind that a temporal artery biopsy does not necessarily always reveal the large cells indicative of GCA as those cells may escape the small area investigated. I have a friend who had three biopsies, all negative - she was given steroids anyway and responded almost immediately which was taken as confirmation of GCA. I hope your appointment comes through very quickly but meanwhile remain alert to any pain in your eyes or blurring of your vision, in which case do go immediately to A&E. Good luck and do please let us know how you get on.

dimas62 profile image
dimas62 in reply to Celtic

I did have a short course of steroids which made me feel so much better but this was stopped on the advice of the first consultant! Should be having biopsy in next week. Current consultant didn't want to mask the result by putting me on steroids immediately BUT has given me a supply to start immediately if I get visual disturbances etc. Having read other peoples stories I realise that I am so lucky with my GP and the new consultant. Hopefully by treating it early I may escape some long term damage. Also very glad I found this forum!

ritter profile image
ritter in reply to Celtic

BE ALERT I agree with celtic please be aware that once you have lost your sight its gone for ever,ritter Anne

Whittlesey profile image
Whittlesey in reply to ritter

Hello, yes I agree with Celtic and ritter on this. I have GCA and the threat to the eyesight is immediate. The steroids right now are all that is available to prevent loss of sight. I have lost a little sight in my left eye -- the peripheral sight and still have some blurriness after reading a long document, but I do have my eyesight. would agree, taking the prednisone can prevent blindness with GCA. wish you good luck and good health. all my best, Whittlesey

Celtic profile image
CelticPMRGCAuk volunteer

Hello again dimas

Lucky escape from the first consultant then!

As for your current consultant not wishing to mask the result by putting you on steroids immediately, the current British Society Guidelines for the Management of GCA state that steroids should not be delayed while awaiting temporal artery biopsy. The biopsy should be performed preferably within 1 week of starting steroids, but the TAB may remain positive for 2-6 weeks following initiation of treatment. If you would like to read up on this, the Guidelines can be found on the PMRGCAuk website. All good wishes.

jinasc profile image
jinasc

dimas

Both your GP and Consultant are making you run a risk that you will lose your sight. Never mind waiting for 'blurry' vision. That could stop within seconds and the sight goes and once gone it is gone.

I suggest you do either of the following, download and print the BSR Guidelines - take them and yourself off to the A&E today.

or Take 40mg per day until you get the biopsy.

There is no way I would risk my sight whilst waiting for a biopsy and as Celtic as pointed out preferably within one week. However, that biopsy whether done to today or next week might not be conclusive.

dimas62 profile image
dimas62

Thank you Celtic and Sambucca. I think you are right about the steroids. Have actually just received a copy of the report from the consultant to my doctor definitely saying to start the Pred before the biopsy if I get visual disturbances. She also says that even if the results come back negative I should take the steroids anyway. Shoulders and hips are very stiff today, am dizzy and have jaw pain so am going to start the tablets immediately. Better safe than sorry!

Thanks for your advice

Celtic profile image
CelticPMRGCAuk volunteer

Dimas - very wise, and we can breathe a sigh of relief now. My head and jaw pain on chewing plus many of my other symptoms improved hugely within just a few hours of my first 40mg dose. I wish you the same and that you feel much better tomorrow. Be prepared for a bit of a sleepless night as you are taking the pills late in the day. I had to do the same and gradually switched them to first thing in the morning after breakfast.

optimist-ok profile image
optimist-ok

Having read all the replies to you I agree with them totally. You will feel much better after a few days on the steroids & it is so important to look after eyes. Good luck!

Hi dimas62,

Very good advice from both Celtic and Sambucca.

I was in a similar situation too when I started myself on high dose steroids after being told it wasn't necessary by A&E.

I know how worrying it is going against medical advice but I and my sight have never regretted it!

Good luck with your biopsy and I hope you manage to get a diagnosis soon. My GP has been great as well, it makes all the difference having their support.

Best wishes

Keyes

tomasina profile image
tomasina

I agree with everyone. Don't hesitate in taking the steroids. The biopsy may well be negative, but you can still have GCA and need to protect your eye-sight. Good luck. Tomasina x

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