Do syptoms come and go for gca?: Hi Everyone I have... - PMRGCAuk

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Do syptoms come and go for gca?

Linny3
Linny3

Hi Everyone

I have had a headache since starting prednisone. I have thought it was a side effect of the prednisone. I just started getting jaw pain a few times. Doesn't stick around long and only had it a few times. I have trouble with my eyes, again assuming it is the prednisone and possibly the methotrexate. No real scalp pain.

Off of methotrexate and have been on prednsione 18 mos. Currently on 13mg. pred.

My question is, do the symptoms come and go, or if you have GCA do the symptoms come and don't leave?

Thanks A lot for the replies.

Lin

18 Replies
PMRpro
PMRproAmbassador

In the early stages of GCA the symptoms may well be mild and fleeting. When you have jaw pain what is it like? While chewing? And goes away when you stop? Or what?

Linny3
Linny3 in reply to PMRpro

the jaw pain was spontaneous, not when chewing. lasted about 10 minutes. The pain went from my jaw up into my temple. Scalp not tender.

PMRpro
PMRproAmbassador in reply to Linny3

Trigeminal neuralgia is a possibility - do speak to your doctor

nhs.uk/conditions/trigemina...

Hidden
Hidden

I'd say, for me, the initial symptoms of GCA (& PMR) subsided (even disappeared) as I acclimatised to the Pred, but then I experienced side effects from the Pred and withdrawal symptoms from the Pred, which seemed to mimic the actual disease symptoms! It was very confusing. I always thought I was having a "flare," when in fact it was just Pred side effects or withdrawals! Even my Rheumy agreed that it is hard to tell the difference! ...but yes, I'd say symptoms come and go.

SheffieldJane
SheffieldJane in reply to Hidden

It’s not like I describe though is it? I think mine is actually caused by the harshness of Pred on the whole digestive system.

gtate1914
gtate1914 in reply to Hidden

At what point or day in your tapering did your symptoms "come and go" or do you always have symptoms "coming and going"? I too think I have confused flaring with pred side effects or withdrawals. On day 8 of 45mg, yesterday started having persistent pain on right side of head and eye, different from the usual aches. So hard to know what to do.

Hidden
Hidden in reply to gtate1914

Good question... Early on I think. I felt great while on 60 mg and continued to feel great until 40 mg... Rheumy had me tapering 5mg every 10 days. When I het 40 I thought I would die... all the symptoms (and more came flooding back.) They increased me to 60 (where I was ) but I had no relief. So they increased me to 80- and I levelled out. We then started to taper by 5mg every 30 days... and it was rough going for a few months at least. I remember having aches or pains one day but the next day they'd be gone and I have something else... that still happens actually!

BonnyQuine
BonnyQuine in reply to Hidden

I agree, mamici1. Sounds right - confusing, and nobody ever sure.

Hidden
Hidden in reply to BonnyQuine

Yup, confusing to say the least!!!!!

I can really empathise with having to be alert for signs of GCA with a PMR diagnosis and nobody so far has been able to say it is unmistakable, although some GCA patients have described a severe headache like no other and the jaw pain definitely upon chewing.

I get rare oesophageal pain as if I have swallowed a pebble and it’s stuck, this comes in a wave that involves jaw pain. I also have daily headaches, dull mild ones. None of this adds up to GCA and over the counter indigestion remedies or sips of cold water see the jaw pain off. I was tested for heart trouble the one time I really panicked.

Linny3
Linny3 in reply to SheffieldJane

Hi

It is funny how we all mimic each other. I get the esophagus pain also. Sometimes very severe with pain in my back. Last week I was ready to head for the ER as I had jaw pain added on to it. I decided to wait it out. Over the counter indigestion tabs work very well.

I started using aloe vera juice daily and it has helped a lot. Still wonder about heart issues.

I just can't stand the thought of yet one more dr. to deal with. ugh, However, I am grateful that they are available when needed. I just keep thinking and working thru symptoms. However, I have about had it with this headache . Not that it is sooo bad, just always there. enough is enough.

Thanks for the replies

gtate1914
gtate1914 in reply to Linny3

Have you taken anything for the headache such as tylenol to see if it lessens or goes away?

Linny3
Linny3 in reply to gtate1914

Only taken tylenol. Doesn't help a lot. Went to dr. today. He doesn't think it is GCA. Going for blood test today. Gave me a nose spray and It is helping. I sure hope that is all it is.

Anyone know what the blood work would show to prove GCA?

PMRpro
PMRproAmbassador in reply to Linny3

There is nothing to "prove" GCA - the inflammatory markers are raised in 80% of patients but the amount they are raised varies from person to person. And the other 20% - no raised blood tests. Even the so-called "gold standard" temporal artery biopsy is only 100% certain if it comes out positive. If it is negative it doesn't mean you don't have GCA, it merely means they didn't see what they were looking for in the bit of artery they were looking at. Which is absolutely not the same thing!

Linny3
Linny3 in reply to PMRpro

THANK YOU

Oh thanks Sheffield Jane, you describe what I have had exactly! Usually a drink of water cures it for me.

Hi, I was diagnosed May 2018 with PMR. I was also having very blurred vision, with intermittent headaches on left side of head. Dr put me up to 60 mg Pred immediately (prior to this had been on 15mg for 3 weeks) and sent me to hospital that evening to see ophthalmologist. It was not GCA.

Dr said it was “narrowed drainage channels” that was intermittently causing pressure to build up behind eyes, thus the headaches. He said this could lead to glaucoma if left untreated. 3 weeks later I had eyes lasered to put a tiny hole in each iris. This sounds awful and I am very squeamish on eye stuff, but honestly it was painless and over in a few minutes. A doddle really, and no more headaches. Hope all goes well for you.

gifford7
gifford7 in reply to Linda369

I also have a narrow angle eye condition and had a recommendation to have an iridotomy [laser hole in iris] in the left eye [the eye with recent loss of upper vision from GCA], which I did not do. Last week had an appt with my neuro opthalmologist who planned to dilate my eyes in connection with GCA, but deferred and referred me to a glaucoma specialist to see if safe to dilate the eyes. One of my sisters had iridotomies in both eyes after suffering a narrow angle closure. I understand its common to do it in both eyes, tho the recommendation in my case a couple yr ago was only the left eye. I do have a cataract in the good right eye, not in the line of vision, and i understand cataract surgery could substitute for an iridotomy in that eye, if needed. This on top of my GCA and GCA stroke a few months ago.

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