What to do

[montebello]

Hi all,

I've been having headaches for about a month -- frontal headaches that often focus on the right-side. I've also lost 10 pounds in 8 weeks, am fatigued, and have a c-reactive protein level of 1.4 (which is not too high but higher that it should be). Sed-Rate is normal.

No jaw pain, but nausea and intestinal issues. I've been to the GP who has taken blood and done a lot of imaging to rule out liver, pancreas, or gall bladder issues and all have returned normal (except for c-reactive protein).

I have had gut issues, on and off, for years and am wondering if the headaches are gut-related or actually are GSA related. I've also had PMR for 6 years, having ended the prednisone regiment about 2 years ago.

I've just returned from a opthamologist who says that "it's up to me as to whether or not to go ahead with a biopsy of the temporal artery." He said he doubts it will show a problem, but the consequences of being wrong are potential blindness or worse. He prescribed 60 mg/day of prednisone that he told me to start taking if I wanted to go ahead with the biopsy.

I'd appreciate any comments about this. Blindness is obviously serious -- but so are the long-term consequences of taking high doses of prednisone.

Thanks ahead of time!

[PMRpro Ambassador]

"that he told me to start taking if I wanted to go ahead with the biopsy."

Sorry - don't get that at all. Is the biopsy to be done in a couple of days? Once you start on 60mg pred your vision is much safer - but the chances of getting a positive biopsy fall by the day.

IF you have GCA and don't take pred, if you lose sight in one eye, there is a 50/50 chance of the other eye going within 2 weeks. It would be permanent and irreversible.

And on balance - taking the weight loss into consideration, I'd be inclined to take the pred and see if those headaches improve. The risk of a few weeks of high dose pred compared to the risk of potential permanent loss of vision - no contest,

[montebello in reply to PMRpro]

The specialist can't do the biopsy for a few days. Are you suggesting that if I start the PRED now that the biopsy might not be a valid indicator in a few days? I think my specialist said that he'd have to do the biopsy within 7 days of taking the PRED. Does that make sense to you? Much thanks

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Whether you start the Pred or not, a biopsy is not always 100% accurate.

If you get a positive result then you know, but all too often you get a false negative -the affected cells may not show in the tiny sample taken, but that doesn’t mean they aren’t elsewhere.

[montebello in reply to DorsetLady]

Well, if I do get a negative biopsy, I'm pretty sure I'll be advised to get off the prednisone since the specialist is inclined to think this is NOT GCA. He also told me that if the headaches improve with the PRED, that doesn't necessarily mean I have GCA. He said in fact he expects the headaches to go away with PRED.... that it tends to make most aches and pains go away. So this is a very elusive thing to chase, this GCA. It's quite unnerving isn't it.

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Yes it is - and specialist is correct in saying Pred masks most pain -certainly at 60mg.

Did you try painkillers for your headaches! If so did they help? If yes then unlikely to be GCA, but if they didn’t help then more likely to be GCA.

If you are still debating taking Pred, then maybe try taking painkillers -if you haven’t already…but it’s always a risk. ..and I’m afraid you’re the only one who can make that decision.

The problem is, as with many others, you have some GCA symptoms, but not all, so it does have to be ruled out.

[PMRpro Ambassador in reply to montebello]

"He said in fact he expects the headaches to go away with PRED.... that it tends to make most aches and pains go away."

I hear this all the time. No it doesn't. It may do in the ones who develop the euphoria - but it does NOT necessarily make everyone feel wonderful. I do wish they would ask patients - and listen to the answers they are given. Especially when they they don't fit with their expectations.

[montebello in reply to PMRpro]

Well, when I had PMR, the much lower doses of PRED did actually make me feel great. No pain anywhere. But thank you...

[montebello in reply to PMRpro]

Why do you "a few weeks" of taking PRED? Wouldn't i have to be on it much longer? Thank you

[PMRpro Ambassador in reply to montebello]

Yes - but if they were confident it wasn't GCA you would be able to stop.

If you start with a high dose of pred and it resolves the headaches and other GCA symptoms you will then reduce the dose. If the reduction doesn't result in a return of the concerning symptoms you are able to reduce steadily to much lower doses. You don't stay at the high doses for ever. Even if it isn't GCA - the potential risks of a a few weeks of unnecessary high dose pred is peanuts compared to not taking pred in case it is GCA.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro-and sight loss is irreversible-the effects of high doses of Pred taken for a few months aren’t!

No brainier…

[montebello in reply to DorsetLady]

Thank you.

[montebello in reply to DorsetLady]

If it's only a few months, then fine. But I've read it is usually 2 years. And even then, how does anyone know when it's safe to stop taking the PRED? Thank you

[DorsetLady PMRGCAuk volunteer in reply to montebello]

You won’t be on the very high doses for that long -they are given to reduce the built up inflammation caused by the underlying GCA, as they were when you first had PMR. It’s just higher doses are required in GCA. Once symptoms are under control you reduce to lower levels as you have with PMR finding the lowest dose that keeps control.

You don’t KNOW it’s 100%it’s safe to stop Pred until you actually do, and then hope no symptoms return..but GCA is self limiting, same as PMR. That’s why when you get to really low doses you make sure every time you reduce you ensure no symptoms return before you reduce again.

[montebello in reply to DorsetLady]

Very helpful. Thank you

[montebello in reply to DorsetLady]

Followp question... the temporal artery that would be biopsied will not likely show inflammation, as there is no tenderness in that area, nor the jaw. But it's not actually that artery that would cause vision loss, correct? Isn't the artery that would cause vision loss buried deep within my brain? Thank again

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Yes it is the ophthalmic artery that affects sight - as was my case -my temporal arteries where never affected -as far as I was aware. Unfortunately it took loss of sight in right eye to discover that!

As this picture shows they both are branches from the carotid artery -ophthalmic lighter in colour and deeper, temporal near surface so accessible-but GCA cells are random-not uniform in all arteries -pot luck really where they are.

Arteries

[montebello in reply to DorsetLady]

I am so very sorry to hear of your loss of vision in one eye. From your comments, however, I fail to see why I should get biopsied if I have no temporal symptoms. Biopsies are risky in themselves, no?

[DorsetLady PMRGCAuk volunteer in reply to montebello]

It’s a very small incision, and most don’t have an issue… but the main thing is -if it’s positive then you have your answer -no ifs, no buts …

..but just because you can’t see or feel anything in your temporal artery doesn’t mean there aren’t cells there, they might be be large enough yet to be causing an issue.

But at the end of the day it’s your choice

I would discuss with doctors and see if you have option of another diagnostic method -ultrasound, CT-PET scan for example -depends what’s available to you.

[Dochaz in reply to DorsetLady]

I agree with DL. I had no typical symptoms of GCA, just extreme fatigue and PMR type pain, but the biopsy turned up giant cells in the R temporal artery nonetheless. No big hassle to get it done just in case. Good luck 🍀

[HeronNS]

Can you get the biopsy asap? It might be negative, which doesn't mean you don't have GCA, but if it turns out to be positive then you have a definitive diagnosis which is helpful. If you can't have the biopsy in short order I'd do as the others suggest and take the pred. All the best. And do let us know how you get on.

[montebello in reply to HeronNS]

Thank you

[Sharitone]

If you really think this could be GCA, as the others have said, it's a no-brainer. Odd that the ophthalmologist wanted you to go on pred first, and I wonder if it came out the way he intended.If it helps, I was told to take 60mg, and then was given a PET/CT scan 3 weeks later. It did still show evidence of GCA/LVV.

[montebello in reply to Sharitone]

Thank you

[Bcol]

Morning, fortunately I've not suffered from GCA, but as already suggested if it's a choice between possibly losing your sight in one or both eyes and taking a high dose of Pred for a while then to me that is a total no brainer, taking the Pred wins hands down.

[PastelsinArt]

I got GCA 2 years ago, which was diagnosed first with an ultrasound scan. I was immediately put on 60mg Pred. I had a biopsy a week later which confirmed the GCA, So the Pred doesn't necessarily mask the symptoms. I was able to start reducing the Pred a month later. I had an ophthalmic appointment yesterday and my eyes are both completely healthy 😊. I'm still on a small amount of Pred to control both PMR and GCA. Hope this helps you decide what's best for you.

[montebello in reply to PastelsinArt]

Thank you. This helps

[Grammy80]

I understand your questions and concerns. Unfortunately, for me, my GCA only got diagnosed when I lost the sight in my left eye....then they did the biopsy which was positive. The biopsy was a totally comfortable procedure. For over nine months my symptoms were diagnosed as flu and sinus infection. I wish someone had put me on prednisone.

You have nothing to lose and everything to gain to find the answer. Have you had bloodwork checking your ESR and CRP? My GCA was hard to quiet down and it is only after three years of high doses of steroids, plus Actemra, that I am at single digits at 7 mg. My advice...do all that you can to get a diagnosis as soon as you can. Get ahead of it, although one gets accustomed to one eye....why risk it?💕

[montebello in reply to Grammy80]

Thank you. Im so sorry about your losing vision in one eye. As for me, the headaches have been going on for about a month. My ESR is normal. My CRP is only slightly elevated at 1.4. When I had PMR my CRP was 8.0. I've taken Tylenol today and it relieved the headache. I'm awaiting feedback from the ophthalmologist about my proposed plan, i.e. to go on PRED and also schedule some non invasive tests. Thanks again. I need all the advice I can get

[DorsetLady PMRGCAuk volunteer in reply to montebello]

If Tylenol alone relived headache, then I doubt it’s GCA…

[montebello in reply to DorsetLady]

You folks are GREAT. I'm so glad I found this forum. Thank you for your selfless giving

[Grammy80 in reply to montebello]

.....we'll be here, not going anywhere! Any question deserves to be answered.💕

[Grammy80 in reply to montebello]

It is a great sign that Tylenol took care of your headache~!!💕

[montebello in reply to Grammy80]

Thank you so much!

[Grammy80 in reply to montebello]

The whole idea behind the charity and forum was....Never Alone. That is what was in the hearts of those that started it. Just knowing you are just a moment away from someone who can truly share and understand, is everything. Never Alone💕 So glad you are here.

[montebello in reply to Grammy80]

Well God bless you and the others, and thanks once again for helping us to never be alone.

[montebello in reply to Grammy80]

I'm beginning to wonder about my headaches. Why are people saying that if the headache goes away with Tylenol then it's probably not GCA?

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Because GCA headaches are like no other and don’t usually respond to ordinary painkillers -they require Pred to reduce the inflammation. “ Normal” aren’t usually caused by a build up of inflammation in the arteries -it’s very often tension, or something else causing them.

[Grammy80 in reply to montebello]

As the others have said, Tylenol doesn't usually ease the pain. With GCA the pain is caused by the inflammation of the arteries and lack of blood flow and even oxygen....Tylenol would not give you relief. Until you get a definitive answer, you will wonder....and give yourself a headache.💕😒

[montebello in reply to Grammy80]

Hi,

An update that I hope everyone gets to see....

I received a private email about my condition a few days ago in which someone told me their headaches were relieved by Tylenol, but that they tested positive for GCA anyway. As a result of that email, I went ahead and got the biopsy yesterday.

As the doctor was doing the biopsy, he told me "I've done a lot of these over the years and I strongly suspect you have GCA. Please go on 60 MG prednisone immediately." The biopsy came back today and sure enough -- it's GCA. I've been on PRED for 1.5 days now, and my vision is suddenly a little bit blurry. I hope it's just the high dosage of PRED.

Thanks all!

[DorsetLady PMRGCAuk volunteer in reply to montebello]

I doubt everyone will see, only those of us who have saved your post…so you might want to do new post.Up to you entirely.

Good advice from surgeon - now you know what issue is you can concentrate on treatment.

Blurriness is almost certainly down to high dose of Pred, but it will settle. Good luck…

[montebello in reply to DorsetLady]

Thank you again

[PMRpro Ambassador in reply to montebello]

You have an answer - positive is positive, no getting away from that! Hope it all settles with 60mg.

[montebello in reply to PMRpro]

Thank you!

[Grammy80 in reply to montebello]

I liked your post because now you know, and that is a good thing! So glad you had the biopsy and did not 'ride it out with Tylenol and suffer damage. Now you can focus on your treatment and don't hesitate to ask questions and avoid anxiety. You have a plethora of friends here. I'm not as well versed scientifically but have walked the walk...thanks to these ladies, I didn't have to do it alone. You won't either.💕 I wish you well!

[montebello in reply to Grammy80]

Thank you. So many questions.... I won't overwhelm you but to your knowledge is the damage done by the inflammation irreversible? I know PRED will act on the inflammation but I'm unsure of whether or not that inflammation actually damaged my arteries permanently. Do you know?

[Grammy80 in reply to montebello]

Our scientists are in bed...they will give you a better answer than I. The arteries are inflamed, enlarged and swollen. The prednisone will quiet the inflammation, increase your flow of blood and oxygen, protect your vision and decrease the headaches etc. That is a layman's explanation from experience. Either DL or PMRpro can recommend a book that really explains the condition. I'm also a fan of Google and YouTube....but they are certainly not always accurate. Sites like Cleveland Clinic and Mayo Clinic give accurate info. You are hanging with the right folks.💕

[Grammy80 in reply to montebello]

P.S, It might be a good idea to write another post on your page posing the tons of questions you have...it might help💕

[DorsetLady PMRGCAuk volunteer in reply to montebello]

Generally the arteries should not be permanently damaged. Once the affected cells in the lining of the arteries have been reduced by the steroids, the arteries themselves should return to normal.

Usually the only time a vessel may be permanently damaged is if the optic nerve is starved of blood/oxygen because the ophthalmic artery has been affected by inflammation. That’s why blindness occurs.

[PMRpro Ambassador in reply to montebello]

It does often scar the endothelial lining of the arteries and that provides sites for atherosclerosis to start

mayoclinic.org/diseases-con....

though it cites raised CRP as a risk factor - the raised CRP doesn't do it, the inflammation that causes the raised CRP may do.

If it leads to a stroke or heart attack - the damage resulting from that may be permanent. And there is an increased risk of aortic aneurysm in patients with a history of GCA.

[mrpullings]

As another poster wrote above, if Tylenol is alleviating the pain it's probably not GCA. When I was diagnosed several years ago, the headache was unrelenting and felt like a tight band was wound around my temples but the pain was mostly on the right side. I'm a headache-y person in general, and I've never had another headache that felt like that before or since. Very unpleasant. It was later confirmed to be GCA by temporal biopsy.

[montebello in reply to mrpullings]

Was the headache you described alleviated by tylenol?

[mrpullings in reply to montebello]

Not in the least - but Tylenol doesn't tend to work for me for headache, only general body aches. Excedrin is my drug of choice for headaches and even that would only take the edge off, not entirely get rid of the headache during GCA.

[montebello in reply to mrpullings]

Thank you. I asked because folks are saying that if Tylenol works, it's probably not GCA. Have a great day