Medication? my doctor said she thinks i have GCA ... - PMRGCAuk

PMRGCAuk

21,324 members40,436 posts

Medication? my doctor said she thinks i have GCA but said she couldn't prescribe medication until the biopsy results.

mollymops profile image
6 Replies

been going back and forth to the doctors for a month now and finally bloods came back and she said she thinks i have GCA. but when i got home i was looking on internet and all websites say you should start treatment straight away, should i request a second opinion or wait for the biopsy?

Written by
mollymops profile image
mollymops
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Badgergirl profile image
Badgergirl

Hi mollymops. Do you have symptoms of GCA such as bad headaches, jaw pain while eating and visual disturbances? If so, you should go to A & E. Your sight is too precious to wait for results.

mollymops profile image
mollymops in reply toBadgergirl

hi badgergirl, ive been suffering with migraines and really stiff neck and shoulders since February, i cant go to a & e got a baby to look after and no one to watch him if i went

PMRpro profile image
PMRproAmbassador

She is wrong - the guidelines from most experts say the risk of delaying treatment with pred until a biopsy result is too risky. The diagnosis should ALWAYS be made on clinical grounds - only about half of biopsies are positive and that does not rule out GCA. If a biopsy is positive that is 100% confirmation that it is GCA - but it can still be GCA even with a negative biopsy. It is thought that once pred at a high dose is started the likelihood of a positive result is compromised which is why she is reticent. However - if she really believes it is GCA she should be starting pred and as soon as possible. You might have to wait weeks for a biopsy. Do you know how long it might be?

If you have jaw pain and visual symptoms, in particular, she should start pred at at least 40mg, preferably 60mg/day. If the symptoms improve rapidly it is a fair indicator it is GCA - if it doesn't then it is possible it is something else. Either way - a GP should be asking advice of a specialist and not making a decision like that on her own (in my personal opinion at least - it would be different if she was going to give you pred "just in case").

If you have visual symptoms you could go to an optician and ask them to examine the back of your eye. They can see if there is a threat to your vision immediately and would send you to hospital to see an eye specialist.

I do understand your commitment of a baby to look after - but if you have GCA you have to come first I'm afraid. You won't be a lot of use if you were to lose your sight would you? If the sight becomes badly affected in one eye it is difficult to save the sight in the other even with high doses of pred and people DO end up going blind. Starting early with the pred is far better. I don't want to sound alarmist - but your sight is a valuable commodity. Once it has gone that is it, no going back.

chubbycheeks profile image
chubbycheeks

This is appalling from a Doctor ! ! Please don't wait, go straight away to hospital and take your baby with you. When I was diagnosed with PMR first thing my Doctor said to me was to go to Hospital straight away if I had any jaw pain or vision problems. Please take care x.

Badgergirl profile image
Badgergirl

I can't reiterate PMRpro's and chubbycheeks' advice strongly enough. Please take the baby with you to A & E if you get any symptoms or at least see another GP as soon as possible. GCA can't wait for biopsies.

raymck profile image
raymck

Agree with all the others, get to an Eye Hospital ASAP! This from a single-sighted member who waited and lost one eye as a result! Good luck, raymck

Not what you're looking for?

You may also like...

Rheumatologist thinks I may have GCA

I saw my Rheumatologist today for my regular 3 month checkup. When she asked how my general health...
Amkoffee profile image

ENT doctor said I have “terrible” TMJ

Due to my constant worry about GCA I saw an ENT doc for my TMJ which I have had for 30 years. I...
3daysinjuly profile image

Sometimes I wonder if it's my GCA or medication

So I see my rheumatologist on Wednesday but after being on 80 mg of Prednisone for about 9 to 10...
twriller profile image

GCA diagnosed last February. Biopsy tested positive. No typical symptoms of GCA,2021 just jaw pain at night but I have had PMR since 2021

GCA diagnosed last February. Put on 60mg Prednisone/day for a month. CRP was 67.7 before 60 mg and...
Vikinga profile image

The cost of my GCA flare...I didn't recognize it soon enough~

I share this in hopes that it helps someone..... I had shared a few days ago I had a flare. When I...
Grammy80 profile image