New GCA patient: Was shocked to find out I have GCA... - PMRGCAuk

PMRGCAuk

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New GCA patient

chanel2
chanel2

Was shocked to find out I have GCA last week. Had a constant headache for 2 weeks and then parts of my scalp hurt to touch and jaw pain. I googled my symptoms then was shocked with the findings. My mother was diagnosed with this condition 50 years ago. Went to see my primary care physician and sent me for CAT scan and blood tests. Blood test showed markers for GCA. CAT scan was normal. Going next week for artery biopsy next week and have an appointment with a rheumatologist two days later. My doctor put me on prednisone 40mg. and felt a lot better by second day.

Who would be the doctor going forward to treat me. Would it be my general practitioner or the rheumatologist? Who prescribes the medicine in the future.

thanks for your help.

17 Replies
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I have learned here that there is usually a Rheumatology referral in cases of GCA. You must be reeling! Thank goodness they caught it early. In your shoes I would question the added value of a temple biopsy. They are not infallible ( it can’t say for sure that you don’t have it) only that you don’t have it in that section of artery. Also you are on high dose Pred which may skew the results. You may also require more Pred until it’s through with you. 40 mgs is a minimum dose for this condition.

Please stick with us, there is a lot of invaluable advice to be had by GCA patients and experts who have come out the other side like DorsetLady.

Welcome to the site, like Pred it doesn’t cure GCA but it makes it an awfully lot easier.

Jane is right. Surely a Rheumy to oversee as well as ophthalmic surgeon for eye care and vascular surgeon re arteries in general. My gp oversees it all xx

Janstr
Janstr in reply to SheffieldJane

I agree with Jane. I had symptoms similar to yours though with raised blood inflammation markers. Although the temporal artery biopsy was negative, i was still treated for GCA, so I question the need for the test in the first place.

Hi darling I’m in Shock too and I am 62. I am on 75 Pred and feeling unwell on it but it has saved my sight. You have to be calm I am finding which is tough. I will be here if u need me xxx

I am in the US. I have a rheumatologist, Gerontologist, and Opthalmologist. In the studies I have read, this is a good plan. It can be a difficult journey, especially the first year. Be gentle with yourself and pace yourself during activities. You may have less energy once the Prednisone starts coming down. I wish you good care on your journey.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi, and welcome,

In UK, GCA is usually treated by Rheumatologist, with day to day dealings with GP, however in North America, which is where you hail from I guess more specialists seem to get involved.

If you are already on Pred, your biopsy may show as negative, but that doesn’t necessarily mean you don’t have GCA, it’s just that the piece of artery sample doesn’t show any signs - not the same thing!

Have a look at this, although if you your mother had GCA you may know most of it -

healthunlocked.com/pmrgcauk...

chanel2
chanel2 in reply to DorsetLady

Thank you for linking your article. So much information in your article. When my mother was diagnosed 50 years ago all I remember the doctor saying this is such a rare decease and that she could go blind or have a stroke. Prednisone was fairly new then and my mom's dosage was always being increased and decreased. I think she had both GCA and PMR. I think right now I just have GCA.

But thank you so much for the info!!

Rimmy
Rimmy in reply to chanel2

Hi chanel2 - my mother also had about 45 years ago what I now realise was GCA (which with PMR I also have) unfortunately she was not then accurately diagnosed and she lost some of her eyesight and had several small strokes after that -and she was never treated with Predisone. Fortunately diagnosis has improved but not to a point we should yet be happy with as you will find reading many comments on this forum.

All good wishes for your journey with this great crowd of people if you choose to hang around !

Rimmy

chanel2
chanel2 in reply to Rimmy

I agree, a lot more to be found out about this. It did take a long time until my mom was diagnosed too. So in some cases it has to be hereditary?

PMRpro
PMRproAmbassador in reply to chanel2

It is not hereditary in the way something like cystic fibrosis, sickle cell anemia, Marfan syndrome, Huntington's disease, and hemochromatosis where there is a specific gene or genes that trigger it but having a Scandinavian heritage makes it more likely you could develop it if the immune system is under sufficient pressure from other factors.

Rimmy
Rimmy in reply to chanel2

It sometimes referred to as 'aggregating in families' although as PMRpro says below it is also associated with certain ethnic groups/origins. I think there is more to learn about all this though - obviously - as it is not unusual to see comments here and elsewhere that other family members have also had GCA and/or PMR - although like me this has not become apparent until decades later for some of us.

PMRpro
PMRproAmbassador

You are in the USA I assume? You probably end up with a lot of doctors who all have their finger in the insurance pie so their income is assured...

In the UK you should see a rheumatologist at least once but then a GP may provide the scripts with annual rheumatology checks. As far as I can gather in the USA people go to a rheumatologist and they generally oversee management unless the patient is a very long way from a rheumy in which case a GP may take over for providing prescriptions - other GPs refuse to have anything to do with it. Traditionally rheumatologists are also vasculitis specialists although nowadays there are people who specialise in vasculitis - but they are few and far between.

chanel2
chanel2 in reply to PMRpro

I agree with you about the insurance pie. Bottom line comes down to $$$$. To bad it has to be that way.

Hidden
Hidden

Oh chanel2, I am so sorry to hear of your recent diagnosis. I too was in shock in November 2017 when I was told I has GCA (and PMR!). I too had "the headache from hell," for about two weeks before A&E (on my second visit) finally diagnosed it. I was started on 40mg, but increased to 60. Had a terrible "flare and was put on 80mg. I have been tapering down and I am now on 35mg. My Rheumy calls the shots and decides how much to taper by and how often to reduce, but my GP prescribes the steroids and orders the blood work. They communicate by letter, mostly Rheumy asking/telling GP what to do and when. Both are female and they seem to work well together.

The very best of luck to you! I hope your road to recovery is short and sweet!

PS I write a GCA/PMR related blog. People on this site have said it is sometimes relevant and maybe a bit entertaining... this particular blog post may be beneficial to you.

rantingsofamadwomanblog.com...

chanel2
chanel2 in reply to Hidden

Thank you so much. Your blog is informative and amusing. I will be following it for sure.

Hidden
Hidden in reply to chanel2

Cool, thanks! Best of luck... you are in the right place! Lots of informed, experienced, intelligent people here to guide you! You'll be fine.

If you are in the U.K. I would expect the Rheumatologist to have overall control of your care with back up from your GP, prescriptions etc. Glad you got the Pred miracle. Take care and keep in touch.

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