Am I worried about GCA for nothing?

[JANNYROSE]

Can anyone give me a bit of advice as I don't seem to get the help or advice from my GP. I was diagnosed with Polymyalgia a year back, apart from a few aches here and there I have been relatively healthy. I have managed to get down to 4mg which I'm so happy about and due to see a rheumatologist my very first appointment I might add at the end of this month. The day I was diagnosed with Polymyalgia I could not move my jaw and almost all my limbs and was started on 20mg straight away and got my life back. My jaw problem as really never gone away, although it's no were near as bad as a year ago, it's always in the back ground. I have never had headaches, neither have I had vision problems, except that my eyes have deteriorated over the past year because of the steroids and I now need glasses. My question is can you have GCA without the headaches, vision problems? I have had the tender scalp over the past year, but that is sporadic. I am 47. Any help would be appreciated as I have gone to the doctors twice in 6 months with this jaw problem and been given antibiotics.....thanks

[DorsetLady PMRGCAuk volunteer]

Jannyrose,

I have GCA, diagnosed last April, and I would be a bit concerned about the jaw ache and the tender scalp if I couldn't pin it down to anything else. Suggest you ask your GP to refer you to the Ophthamologist at your local hospital to check for GCA. Better be safe than sorry, I lost the sight in my right eye because the GP didn't pick up GCA. Alternatively, you can always go to A&E dept, as it usually has an eye specialist on duty. Good luck, Dorset Lady.

[2watsons in reply to DorsetLady]

how are you coping with one eye ??? i still worry and seem to be taking long time to get used to it.Now on 7.5 mg predisolone and on methrexate weeky

My eye loss was over night ,just had felt as if i was going to get flu and had ear ache Any reasurance would help .

[DorsetLady PMRGCAuk volunteer in reply to 2watsons]

Hi 2watsons,

As you know some days are better than others, some situations are easier. My loss was similar to yours, over the space of a day. Driving seems to be okay, but not in the dark! Parking can be a bit challenging. Most difficult is trying to do fiddly things, like catches on jewellery and I'm apt to miss the cups when making tea etc. housework is a bit of a nightmare, not that I'm very keen on that anyway! What I do find annoying is that no-one seems to take the loss of one eye as very serious, whether is acquaintances or the medical profession. The most common reaction seems to be "yes but the other one's alright isn't it". It might be, but if we didn't need two then we wouldn't be born with two. People wouldn't make that comment to anyone who had lost an arm or a leg. Sorry, whinge over.

There are days when things are a problem, but I think if you can come to accept that the brain is slowly coming to terms with things, and you have to as well then you can progress. The days I feel down, I just say to myself, it could have been worse, I know I could have lost the sight in both eyes but for an excellent Ophthamologist so I'm thankful for that. now down to 13mg. Take care and keep in touch. Dorset Lady.

[JANNYROSE]

Thanks Dorset Lady for your advice, I think I will have to do as you suggested for my own peace of mind, like you say better to be safe than sorry. So sorry for your eye loss, god bless x

[2watsons]

Please go and check ,i lost sight in one eye 8months ago ,had had PMR some years later and seemed to have gone but was hiding ?/ ,i just felt as if i had flu and ear ache and took no notice if only ,so please see Dr ,Hope all goes well .Sure it will .

[JANNYROSE]

Thanks or your advice too, will book myself an appointment tomorrow. You mention ear ache I almost forgot about that, I do sometimes get that too. Take care, x

[Celtic PMRGCAuk volunteer]

Hi Jannyrose

Both jaw discomfort on chewing and tender scalp are classic signs of GCA and even though you had the jaw symptoms at diagnosis you weren't started on a high enough steroid dose to be certain of controlling possible GCA symptoms at the time. Yes you can have GCA without the headache. I would not hesitate to get this checked out immediately at your optician's or even at A&E - even if nothing nasty is found (and I fhope it isn't), no-one is going to mind checking you out where possible risk to eyesight is involved.

[JANNYROSE]

Thanks for that, your advice as been appreciated. Off up there tomorrow, fingers crossed all will be well. Will post a update as soon as possible x

[allotment-lover]

I have GCA and never had any headache. I did have jaw pain and tender temples but had no idea they were significant. Then on 2 days I temporarily lost vision in 1 eye and went to A and E who put me on 50mg of Pred right away. My aches and pains felt better almost immediatley. I am glad you are getting this checked out. My optician said he had seen several people with GCA who had not had headaches.

Good luck.

[JANNYROSE]

As you say and others too 'most people don't have headaches'. Glad your ok x

[bowler]

Hello JANNIROSE

I am surprised that your GP hasn't sent you for a temporal artery biopsy, especially as you have been diagnosed with PMR which goes hand in glove with GCA, although you can have one without the other.

I assume you are having regular blood tests [ ESR] Not sure why you have been given antibiotics for jaw pain,? the tender scalp and jaw pain could suggest GCA

I know you are quite young to have GCA but I was only 54 when I was diagnosed with it 14 years ago. However as you are soon to see a rheumatologist I'm sure he/she will get you sorted.

Thinking about it, I expect your GP hasn't sent you for any tests yet and is waiting for the outcome of your rheumatology appointment, it's just a pity you have had to wait so long for the appointment

PS

My GP didn't diagnose my GCA it was a locum,!! I was being treated for

headaches/depression by my own GP. However I didn't blame my GP. as lets face it they cant know everything.

Good luck.

[ I am new to this site and finding it very informative ]

Pat [ Bowler ]

[JANNYROSE]

Hi there Pat, I'm new to the site too, only joined yesterday. Good thing there are these type of forums for us worried folk out there. I am quite young to be diagnosed with GCA as you say and so did a new independent Dr I saw this evening. According to him I'm fine. With no headaches and other symptoms apart from the jaw which I have had sporadically for a year now, he seems to think I have a touch of arthritis of the joint. I have had numerous blood tests over the last year and nothing as shown up, my ESR went down once I started steroids, but I have not had a ESR for about six months. So I shall see a rheumatologist on 22nd of this month and hopefully all will be well. Can't believe I have never seen one until now actually, but there you go. Good luck you too x

[bowler in reply to JANNYROSE]

Hello again.

When I go for my rheumatology appointment, I usually get a blood test done to take with me.

The nurse in my surgery prints it off for me to take to the hospital, or it could be faxed through? It does save a lot of time especially if the rheumatologists wants an updated blood test to include an ESR. Otherwise you will probably have to go to the haematology department for a blood test, which takes time, and if it's anything like my hospital there is always a long wait for a blood test. Just a thought.

Please let us all know how you get on.

Pat x

[JANNYROSE]

Oh thanks for that Pat, great idea, I shall do that as our hematology is always full too. It will take some of the stress off me as I'm a bit nervous about hospitals in general and never seeing a rheumatologist before.... well! Shall definitely let you know and thanks again x

[JANNYROSE]

Hi all, well here's a update. Couldn't wait till the 22nd off this month to see my Rheumatologist so I decided to book myself in for a complete eye check, as I have been worried about GCA. I had the works and it was worth paying for. My eyes have deteriorated due to the steroids as I have been taking for the last year, on 4mg now by the way. No headaches etc, just jaw pain and movement problems on the right side of the jaw which have been sporadic for months. Very painful, but no GCA, all clear. I would recommended a eye check if you are worried. Hopefully will be heading down to 3mg soon, considering I was on 7mg 4 months ago I'm not doing too bad at all compared to some poor souls, so I am so grateful. Remember, patients and lots of them....x Angie

[tomasina]

May also be worth getting a CRP done whilst they are doing the blood test (inflammatory marker) in addition to ESR.

Good luck.

Tomasina

[JANNYROSE in reply to tomasina]

Hi Tomasina, thanks for that. All sorted now, had a CRP test all is well, but had to rise my steriods due to a relapse. Only on 6mg so not too bad, I decreased too quickly so it was my fault. Keep well...x

[Whittlesey]

Hi Jannyrose, My mother had GCA, when she was 70, in 2001. She had a terrible headache, continuing and some vision problems. Her internists, continually gave her antibiotics for sinus impactions (which she previously had had). One day while driving she began to see double. She got herself to Yale University Hosp. in New Haven. An ER doctor did a biopsy and a test for c reactive protein and diagnosed GCA. He started her on prednisone and her eyesight in her left eye returned. I started to come up to CT on weekends to help in her care. She could see and was in good spirits. We were all pretty frightened by the almost incorrect diagnosis. She gave me all kinds of literature on GCA and PMR and some said it was generational.

At 59 I had a very bad headache with a high c reactive protein. It took four months before they did the biopsy. When they did it was positive, I also, like my mother had GCA. My sed rate was always normal, except after the biopsy, it was high.

I would ask for the c reactive protein test and the biopsy, based on what you have said. The biopsy is only a small part of a slightly used temporal artery in your forehead and in the U.S. is considered a strong determining factor, for diagnosing the dangerous GCA, especially if combined with a high c reactive protein. The immediate treatment can save your eyesight. My mother's failing eyesight should have been a green light for her Connecticut internist that she might have GCA, a disease mostly of elderly people, not a sinus infection, but apparently it wasn't. My family thanked god for the young ER doctor at Yale who immediately suspected GCA. Her prednisone was reduced to 4mg and she was comfortable with that and was even driving at age 71.

Think those tests might be a big help so that you know what you are dealing with. wish you so much luck with these diseases,

best, Whittlesey NYC U.S.