GCA -What were your first few symptoms ?

I would suggest booking an appointment with an optician as well. The doctor will not be set up to do the eye checks required. Better to be safe than sorry.

I agree with Floramac - get thee to an optometrist (an optician who can do all the eye checks, not just prescribe specs) asap, today, don't wait. If that isn't an option - go to the ER/A&E.

It isn't JUST GCA you need to be aware of - your eyes are precious.

Hi,  I am 59 years old, was diagnosed 2 years ago with polymyalgia.  My experience with GCA was 2 months ago.  My rheumo said to me to watch out for bad headaches.  I had a headache for 3 weeks that wouldnt go away and then it got very painful at back of head, over the top of head , forehead and a feeling of swelling around and behind eyes.  Also the veins on the R side of temple were very swollen.  So we headed off to the local hospital and the dr in charge diagnosed me with GCA.  I was given a very high dose of Prednisone (80mgs) and stayed overnight.  By the afternoon of the following day my bad headache was then a dull ache.  My rheumo set the drs straight re how to treat me as my inflammatory marker can't be relied on to show a high level of inflammation.  Now I am still lowering my prednisone.  I got down to 2.5mg am & pm, but the bad headache and swelling around my eyes came back so now I am taking 5mg am & 2.5mg PM.  I seem to cope better on this formula. The dr in ER said it was very important to get to the hospital before losing my sight - if you lose your sight then it cant be fixed, its permanentI reckon you should go to the ER or ring your dr re what is happening in your situation.  Hope this helps and good luck.

Hi Flutterbie - my first symptoms were severe headaches and visual auras. The latter scared me so much (though they were quite beautiful - colourful flashes, changing colourings that lasted a few seconds) I knew it was not just the 'flu, as I first thought it was. My doctor immediately put me prednisone and placed me under the care of the diagnostic department of our local hospital. In quick succession, I had ultrasound, CT scan, blood tests, Xrays, eye tests, temporal biopsy, talks and physical tests with various consultants - vascular, cardiac, eye. Diagnosis was swift and a regimen of prednisone, omeprazole and enteric-coated aspirin, fozamax (for bone mass) was started plus regular assessments by the rheumatologist that will go on till the end of next year. Now, nine months later, the headaches have gone, there is no pain in temporal area (and it didn't spread anywhere else) and it's just a matter of dealing with the (decreasing) side-effects of the steroids. And my straight hair has gone curly!

All the medical consultants have said GCA is treatable, manageable and in many cases, curable. That's good enough for me to be totally positive.

Please see your rheumatologist. 

When you were a diagnosed with PMR, the medic is supposed to tell you what to watch out for in relation to GCA 9the big sister).  Unfortunately that does not always take place.

I would not wait till tomorrow, I would be off to A&E right now and if met with 'blank looks' ask to see the Consultant in Charge of A&E, tell s/he you have PMR and why you are here...........so no more looking for an answer here - off you go............you have nothing to lose by going and everything to gain, you have something to lose, either partial or total and it is called your sight' and once that happens it is gone.  Please get going...............

Hi Flutterbie, it sounds serious enough to me to go to your dr today, not tomorrow. I had very slow onset PMR first too. For about one year I was gradually getting stiffer in my shoulders and hips, especially in the morning getting up was getting more and more difficult. Then I could not lift my arms to wash my hair anymore, without the other arm pushing the first up. I also began to have absolutely terrible night sweats. When I finally could not get out of bed I went to my GP, who gave me a test set of prednisolone. In one hour I was completely cured! Total miracle. Over the following weeks, I exerted myself too much, moving my kids, driving for 12 hours etc. Then the prednisone dose of 10mg was not enough anymore, went to 15 and a month of 20mg. Still headaches, low fever (37.5- 37.8) and night sweats. Then I had a first eye problem, no pain, but like you (I believe) a scattering of the image, fluttering in some spots. I found out it is called scintillating scotoma. Wikipedia has pictures of it. It went away after a couple of minutes and we (rheum and I) did not react to it. The next week I had an almost complete black out of the same eye. I was immediately diagnosed GCA and put on 60mg prednisone. This was September 2016. Then too quick lowering of pred led to a flare-up in December. Sinc then I have been following the DSNS method and am now going from 17.5mg to 15mg.  hope to be below 10mg by end of this year. Luckily I seem to have few of the nasty side effects of pred.

Check out Wikipedia. If it was what I had, I would go to your dr immediately for a higher dose of pred. You do not want to lose one eye.

1st symptons for me were aching shoulders and shooting nerve pain from elbow out to end of 2 middle fingers. No eye pain thank god, Press that your very concerned with your Dr. And need some immediate attention. Sounds like something else going on other than PMR.  My Dr. Has tested for about 30 dif. Blood tests in relation to having PMR as to seek out any possible underlying causes.

Flutterie57, I hope your doctor questions you about GCA, mine does each time I she her. Plus always ask when next eye exam, schedule next month for me. I would schedule an eye exam ASAP. Good luck!

Hi Flutterbie,

I have GCA and your symptoms sound a lot like GCA to me. One of my first flare symptoms is random tender scalp areas. Before I was diagnosed and the horrible headaches and neck ache began, I went to the ER with a shooting pain through the side of my head. I also recognize your comment about something not right and unable to clearly define it. Please let us know what your doc says.

Best

Karen

I forgot to mention that one of the early symptoms was jaw claudication which made chewing painful.

Thank you to all people who answered my question. I  got something from all of you and I will react quicker if I have any more symptoms/changes and  get myself off for medical help immediately.

?I saw a different Dr today who asked all the GCA related questions. She did numerous blood tests, sent me off to the Lab with my own blood immediately and gave me a letter for Optometrist and told me not to leave until they did all the required tests.

My blood tests came back 'ok' but like Denise my inflammatory markers have never been significant.

?My eye checks all looked promising with no hints of GCA.

?At this point in time they are thinking I may have had the scintillating thing/mini type migraine like koen and the severe pain thru forehead/eye/cheek may be a neuralgia.

?Both Dr and Optometrist have given me instructions, like you all have, to get myself in for immediate medical care should I have any symptoms again.

?Tender areas on scalp, face and neck have continued to move around and bother me all day and I still have my 'thick' head.

?I live in hope that the new problems will all disappear overnight, but thanks again for all your reminders in case they don't.

Here is hoping that all will subside over night