Return of Giant Cell Arteritis

[Heather270240]

I was diagnosed with GCA in March 2010 after losing sight in left eye. After Several relapses I have got to 6 mg of Pred. I have taken reduction very very slowly and been on 6 mg since Christmas. However 3 weeks ago I had a very nasty virus, cough etc but has now cleared up. Last week I had blood tests CRP ESR and Platlet. Doctor phoned today saying she was concerned about the results. ESR 47 normally 15, CRP 7 normally 1 and platelets 650 normally 310. She immediately said it showed return of GCA. I have had occasional headache, breathlessness and generally feeling under the weather but nothing like the symptoms when I first had GCA and PMR. I was told sometime ago that you could not have GCA twice and in fact Rheumatologist told me some months ago I didn't have it. GP has now put me on 40 mg of Pred to see if I feel better. Is she being over cautious or can GCA return?

[PMRpro Ambassador]

GCA can return though it isn't common. But whoever told you you can't have it twice is probably skating on rather thin ice!! Never say never!

I think your GP is probably overreacting - the cold and infection can have caused the raised levels and a basic rule is to check again after a week to establish a trend before raising the pred dose.

[Heather270240 in reply to PMRpro]

Many thanks. Exactly as I thought. I think she is being cautious because 9 years ago the GP misdiagnosed and consequently I lost my sight. Am I correct in thinking that after a week at 40 I can drop back to my 6 mg?

[PMRpro Ambassador in reply to Heather270240]

No real reason why not - though it might be a bit of a shock to the system!

Has it made any difference?

[Heather270240 in reply to PMRpro]

Today was my first day at 40 so no difference yet.

[Blearyeyed]

So sorry to hear your news , it must be very disheartening.

The GP might be being over cautious but with the potential of GCA and possible vision loss it may be best to err on the side of caution.

I think you should call you Rheumatologist . You can request to speak to their secretary , explain everything to them , including your blood test results and that the GP has increased your dose , but you are concerned and would like to hear the Rheumatologists opinion , and find out if you should be having any further tests , like an ultrasound on the head and chest , and an ECG , just to make sure that it is GCA and not something else.

If you have an Opthamologist or qualified optician it would probably be a good idea to inform them too , as they may want to give you an appointment, or bring one forward, so they can check your eye pressure and make sure nothing is affecting your healthy eye and your vision . Better safe than sorry.

I

Idon't know about any figures or cases of people with recurrent GCA . But I do know that this needs further investigation and monitoring than that available at your GP surgery whatever it may be. Getting those tests and a Rheumy appointment now , may make your return to recovery alot swifter.

Take care , stay positive and calm , get plenty of rest , and please keep us posted on what you plan to do and discover. Bee xx

[Heather270240 in reply to Blearyeyed]

Hi Bee. Unfortunately I don't have a Rheumatologist or Ophthalmologist I have been left to my own devices where my GCA is concerned. I did see a rheumy last year because of my spine and he said I didn't have GCA or PMR and you don't get GCA twice. I will see what GP suggests next week and I will probably see an Opthalmogist privately.

[Blearyeyed in reply to Heather270240]

I think that's a great plan , but a return appointment to the GP and a further test of your inflammatory markers is important.

You can decide from there , but to be honest , I would definitely ask politely but firmly to have a referral back to Rheumatology and even a Opthamologist too to be sure about what is actually the cause of this if I was in your position.

Take care and please keep us updated , big hug , bee xx

[PMRnewbie2017]

Hi. I have GCA and PMR. My Rheumy sees me every 4 months and always says "if you have a relapse you must go straight to A&E and tell them I sent you". Apparently he has a special interest in GCA. This implies that it can re occur but when on steroids I believe that is less likely. As for 40 mg my feeling is that is overkill. Listen to your body and perhaps taper down to 10 over a week and get another blood test.

Incidentally I caught that virus too and have felt below par for weeks. I just started to feel better and bang, it's back worse than before. My blood markers went up too but Rheumy agreed it would have been the infection.

[Sheilamac]

The thing is, you'd have needed a blood test a week or so after this one before starting a big dose of steroid because if your markers come down you won't know why. Without real symptoms of GCA do the raised markers not sound more like signs of infection?

[Daylily2000]

Following

[Heather270240]

I did have symptoms on and off for a couple of weeks, headache and tender scalp which I wasn't too concerned about. GP wasn't taking any risks as I lost my sight 9 years ago because they didn't give me pred and sent me off on holiday, giving me codene for the pain my my jaw. If you read my profile you will find my story.

[LRevell]

When you had a flare was it just a slight headache?