Now what?

[kay7954]

I have all the PMR and GCA symptoms, have been on Prednisone 60mg for 10 days and I had a biopsy on Wens. I just got a call that the biopsy was negative... The surgeon put a call into the Rheum's office to let her know. I am responding to the prednisone and feel so much better and my left eye is not as blurry. I guess we will see what they decide to do.

[HeronNS]

It's good the pred has made you feel so much better. If you have had GCA symptoms then those symptoms override any negative biopsy. A negative result doesn't mean you don't have GCA, only that they didn't find the giant cells they were looking for. The advantage of a positive result is there is never any question, if attempts are later made to change the diagnosis, you have proof that GCA was present. Have you also had a good, thorough examination by an eye specialist who understands GCA? My ophthalmologist gave me a really good examination and in the course of it told me more about pred and the seriousness of the disease than my GP ever had!

[DorsetLady PMRGCAuk volunteer]

Hi Kay,

As Heron says just because your biopsy was negative doesn’t mean your GCA diagnosis is invalid. Let’s hope the Rheumy takes more notice of the symptoms you had pre Pred, and the reactions to that medication. That’s more reliable than the biopsy.

Please keep us informed, in the meanwhile this may help you a little -

healthunlocked.com/pmrgcauk...

[piglette]

Hi Kay, just because the biopsy is negative probably means that the pred is working. Anyway things sound like they are on the up.

[Hidden]

Ohhhhh, good luck! I too have PMR & GCA. Had some ups and downs with the Pred, caused by an aggressive taper down plan, but Rheumy has me on more conservative plan now, which seems to be working. My bloods (ESR & CRP) were always pretty normal (maybe slightly elevated) and the TAB specialist, declined to do the TAB on me as he said there was a only a 1/500 chance of him actually getting an inflamed bit of the artery and the risk outweighed the benefit. I have been on steroids since 11/17 and slowly tapering down, now on 40mg. It's a long, hard, scary, frustrating, exhausting road... but things do get better. You'll have some great days when you don't even remember you are ill, and some other days where you're sure you will die... you won't.

Best of luck! May your time on this journey be short!

[Hidden]

I had exactly the same. All the symptoms which went immediately with pred at 60mg but biopsy negative. This was at Christmas and my consultant has continued to treat me for GCA I am now down to 10 mg pred and feel so much better. Still have to pace myself and do not have the same strength but my eyesight has been saved. So thankful for that.

[Hidden in reply to Hidden]

WOW! Down to 10 mg since Christmas???? That is fabulous!

[Hidden in reply to Hidden]

Yes I can’t quite believe it. Just praying this progress will continue. Hope you too can progress well.

[Hidden in reply to Hidden]

Thanks. I guess my progress will be "slow and steady." With one failed taper down behind me, I am now on a very conservative taper down... I won't be to 20 mg until September (fingers crossed) and then from there we go "dead slow and nearly stop."

You may have some set back, but just keep your eyes on the goal, you'll get there! Best of luck!

[Hidden]

I too had a negative biopsy in Dec 2016. This Jan the new Consult queried whether I had GCA or even PMR as I hsd been on a high dose of Pred for so long. I am now on 22mg and only reducing 0.5 at a time which works for me. I showed her the list of symptons pre pred and seemed to change her mind. Didn't try to push me to get off the Pred asap this time. Mind you have had a squamous cell thingy removed from my nose. Had a week of antibotics following. Still got infected and now on 3rd lot!. Raised my CRP from 0 to 5.

[sondya]

I had GCA, the biopsy was positive. I was told if the biopsy was negative, another temporal artery on the other side of the face would be carried out.

[PMRpro Ambassador]

If you are responding to the pred - I do hope they take that into consideration.

A negative biopsy doesn't mean you don't have GCA - it means they didn't find what they were looking for, the large cells with multiple nuclei that give the disease its name. There are a lot of reasons for that - from not enough artery in the biopsy, the fact the cells don't appear evenly through affected arteries and that it may not even be IN the temporal artery but is affecting other arteries and even trying both sides of the temporal artery may not make a difference. So symptoms and response to pred ALWAYS trumps the biopsy result.

Good luck.

[Telian]

My TAB was negative but ultra sound positive and bloods elevated - negative TAB doesn't mean you haven't got GCA just didn't get enough of the inflamed bit. Your symptoms and the fact you have responded well to steroids indicate you have it..

[kay7954]

Thank you all for the responses. I forgot to share one other thing. When the Rheumy was assessing me, she could not find my right carotid pulse, so she sent me for an ultrasound. We should know the results by Tues. It may very well be that the GCA just didn't show up on the temple artery, but is still present. My labs were elevated but not real high like others. We shall see what her next move is.

[Telian]

Exact replica of me, except I didn't have to wait for US results, I was lucky my Consultant carries out his own scans and let me see the inflammation on screen, fascinating - I can say that now but at the time I was well out of it so didn't appreciate the technology.. ATB Kay.