2yrs post GCA biopsy

[granny-b]

Hi folks. Sorry but I have 'silly' questions that I can't get my logical head round.

Today I celebrate my 2 year anniversary of my GCA biopsy - result positive and lucky me no sight loss.

Had a steroid reduction interruption end 2016 when the nasty GCA sibling PMR came along. Currently taking 7mg and have mild head rumblings on the GCA locations.

Q1. I have had the bit of artery taken when the biopsy was done. How come the same side temporal area and the biopsy site have been reminding me they are there?

Q2. Is my eyesight on that side 'protected' from further risk?

Q3. No longer convinced about PMR diagnosis as I have never achieved a steroid assisted 'pain free' state. Could it be osteo..something or fibromyalgia? Maybe a mix of all? I struggle to walk even slowly with a stick and apart from shoulders and hips I have 1calf muscle and same side ankle hurting lots.

Sorry to moan on q3.

Funky little granny (3 yr old just gave me that name 😘)

[DorsetLady PMRGCAuk volunteer]

Hi granny-b,

I think I'm correct in saying that although it is the temporal artery that is subject to the biopsy, and that's why GCA is sometimes called Temporal Arteritis, it's not that particular artery that affects your sight.

It is when the ophthalmic artery is affected that the blood doesn't get through to your optic nerve and thus sight loss can occur. The temporal artery is closer to the skin and obviously a lot easier to operate on than one that is deeper into your skull.

I never had enlarged or painful temporal arteries at all, but I still lost my sight.

It doesn't matter what side your biopsy was done, it makes no difference to whether the eye that side is protected.

Not everybody is completely pain free, but if you are getting "new" head pains think you need to discuss with doctor - maybe you have gone below the Pred required.

At 7mg your adrenal glands should be starting to work again, which very often causes problems - I found fatigue a problem just below that level.

Also at that level other pains, such as osteoarthritis etc rear their ugly heads, previously masked by higher levels of Pred. So suggest you see doctor and check out if other things are occuring, or you could try increasing your Pred by a mg or two. If the pains go, then it could be you've gone a bit too low - if the pains remain, then it's probably other things!

Take care,

.

[Aleish]

I'm new on this Gca/PMR journey. I find the prednisone took my pain away fast for most problems, but if I deviate from my strict diet, which also is a combination of anti inflammatory and no foods that are my food allergies, I am left with a very low amount of pain that does not bother me. If I cheat I'm getting some pain but I also have had fibromyalgia for 35 years. The diet is crucial for me. Before the prednisone, the diet only helped a little and I was on a lot of pain meds. Now if I cheat I might need two Tylenol and 1 pain pill.

[PMRpro Ambassador]

As DL says - the temporal artery is the artery they can see and get at - it has more to do with scalp symptoms than eye symptoms in fact. The bit of artery they remove is only about an inch or so - and even then they sometimes don't find giant cells because they are affecting another bit. GCA can affect any artery with an elastic component to its wall - all over the body, not just your head. Have they always "reminded you they are there"? Or is this new? The biopsy site does involve some nerve damage - I have nerve discomfort around surgery sites from over 20 years ago.

If the blood flow to the optic nerve is interrupted your vision on both sides is at risk - and as DL says, it isn't the artery supplying the optic nerve. Unfortunately, a dose of 7mg would not be enough to protect your vision if GCA is starting up again - although I do know of doctors who think so.

Lots of people are never totally pain-free even on pred, or if they are it is at a very high dose that isn't sustainable over years. However - your complaint sounds a bit "sciatic" - and that could be due to low back muscle problems, gluteal or piriformis in particular, which can pinch and/or irritate the sciatic nerve. Sciatic doesn't have to be the sharp pain some people experience - it can grumble on over a long period. Got that t-shirt!!!

[granny-b]

Hi folks,

Thank you for replying. Sorry for not responding sooner, have been 'powerless' tablet wise for a while. Am now restored to the forum. 😊

Yes, my head grumblings have happened before usually alongside inflammation blood marker raises. Since original biopsy my consultant has done 3 scans when blood results and grumblings coincide.

I've got a routine blood test this week and arranged to see my GP next week but if my head gets seriously grumbling before then I know where to go!

I was down to 7mg on GCA treatment when PMR first showed up although as Dorset Lady says that is when all the other stuff can rear up too. Maybe this is why my body hurts. Even though my prednisolone was upped for the PMR I haven't been anywhere near pain free. The wimp in me says too much pain and my brave button says it's tolerable and could be worse. 😏. At the moment I am in the too much camp for body pain not head pain.

Been thinking about your explanations about biopsy and optic nerve. Pretty obvious that if they are concerned about blood flow to the optic nerve they wouldn't cut away a piece of the artery that did the job. Doh...

As for my diet, totally off plan. Weight gain with the increased prednisolone and not enough oomph to bring it into order. Pass me another chocolate bar please..

I have excellent care and so much of nothing to grumble about. Sorry to have bothered you.

X

[PMRpro Ambassador in reply to granny-b]

Never a bother - never ever think that.

The trouble with accepting what even you admit is too much pain is that it is showing there is inflammation running riot in your body. And long term, even low grade, inflammation causes damage to the tissues and puts you at risk of longer term problems in the form of peripheral vascular disease and some cancers. There is no virtue in suffering on a lower dose just to say you are at a lower dose - there must be benefits to outweigh the downsides.

[granny-b in reply to PMRpro]

Thanks PMRpro.

I am trying to get off the steroids because I want to but consultant has suggested I might one of those who will need to be on them for ever. I know that is the opposite of what most say about their medics!

I suppose I am hoping that I have something less serious that could be treated with less significant meds. Oh for a common cold!