GCA biopsy result

[Hollyseden]

Took almost 3 weeks but today I got letter to say not GCA. No inflammation showed in biopsy so back down from 60 to 15mg fit PMR and visit doctor for more info re tapering. Here we go and wish me luck

[jinasc]

Now I am puzzled, why did they do a biopsy, did you have the classic symptoms (this link will take you to them pmr-gca-northeast.org.uk/us....

How long were you on pred before they did the biopsy?

[Hollyseden in reply to jinasc]

Had been on 15mg Pred for about 5 weeks. Saw doc re strange headache, she called rheumatologist who upped Pred and arranged biopsy for 4 days later. Result took longer to come back.

[DorsetLady PMRGCAuk volunteer]

Hi,

"no inflammation showed in biopsy" - means just that, it doesn't necessarily mean you don't have GCA in other blood vessels though. Sorry.

If you're back down to 15mg then you must keep a note of any returning or new symptoms, just in case the result is wrong.

I do hope you only have PMR, but just be aware, and if you get any symptoms then back to doctor toot sweet!

[Hollyseden in reply to DorsetLady]

Thank you for your wise words, I will watch out. I've been reading a lot on this forum, it's so helpful. Hopefully now have PMR alone to deal with. Back to doc next week re tapering which I've also read quite a lot about. Looks daunting 😌 Thanks again for all your advice on this forum.

[DorsetLady PMRGCAuk volunteer in reply to Hollyseden]

Just a word about tapering - much as the doctor may want you to do as quickly as possible - that isn't always possible. No one can tell you how long your PMR will last - wish we could, but so long as the PMR is still active you need the correct amount of Pred to control the inflammation caused by it. And one size certainly doesn't fit all!

When you talk to your doctor next week, tell him you will try and follow the plan, but if your symptoms return at any time do you have his permission to increase your Pred (within reason - set a limit if necessary) without having to see him beforehand.

As we've said many times, the initial dose hopefully is enough to clear the accumulated inflammation - and if you've been on 60mg then that should have happened, but now you have to find the level that controls the new inflammation that's created every day. Go too fast and you may go below that level - it's a very fine balancing act, and many things can alter the amount you need - a cold, stress, doing too much, even something nice like going on holiday or Christmas!

You will learn to listen to your body and do what it needs, and you will get through it, not going to say it will be easy, but by taking things slowly it will be easier.

Take care.

[PMRpro Ambassador]

I hope they are right. No inflammation found does not mean not GCA - it means no inflammation found. Not the same thing at all.

So keep a watch out - any return of the head symptoms back to the doctor. Any visual symptoms - straight to the ER.

[yewtree]

Hi Hollyseden. I'm still waiting for an appointment with rheumy and brain scan having been put up to 40mg on Wednesday for chronic headache and sore tingling scalp. Symptoms nearly all gone, but I realize now that I had a similar episode in the spring which cleared up spontaneously. How long did it take for your head symptoms to go?

[Hollyseden in reply to yewtree]

Hi Yewtree I had the headache for 2 days before I saw the doctor. Each time I saw her re PMR she asked about head or jaw pains and warned me to be aware of this. Suffered from migraines from my 20s but definitely not one of those. Painkillers didn't help head either. Put onto 60mg, headache faded over next couple of days. Could have just been mad Pred head but glad that I at least got it checked out. Advice on this forum is priceless. 'You are not alone' Hope your symptoms stay away too

[yewtree in reply to Hollyseden]

Looking back over my diary I see that I have had these head pains on and off for nearly a year and although I told the GP (who I thought was very good) she didn't associate them with GCA. It was only when my head got unbearably tender at night that I complained more vigorously and am now on 40mg steroids! I certainly feel a lot more comfortable now - my only worry is that I won't get my ablation in 4 weeks as the palpitations are ruining my quality of life - still maybe it will all work out in the end and I shall be a new woman in a few months