I am new here: possible GCA

[Elizabeth55]

I have had a vein pain on the left side of my brain for a while. I mentioned it to an eye doctor and to a vascular doctor who is treating me for varicose veins. No one knew anything.

I finally went to the general practitioner and she said I could have temporal arteritis. It is so scary. I am on 20mg prednisone but I am a little panicky that it might not be enough. I have an appointment to see a vascular doctor on Thursday the 9th- not soon enough.

What should I be concerned with? I still feel the pain a little bit on the side.

I have seen an eye doctor because I have those eye floaters. He saw licking on both eyes but didn't make a big deal plus he didn't know about the danger of temporal arteritis. I have had back stiffness for years and years and also around my neck so I always thought to see a chiropractor but it never goes away. I thought it was my spine so I have an appointment with a spine dr made before I was told about this disease.

[DorsetLady PMRGCAuk volunteer]

If your GP suspects it may be GCA, then

a. she should have prescribed a higher dose, 40mg is recommended in guidelines, until a definite diagnosis can made and

b. It should be treated as a medical emergency, so yes ideally sooner than 9th, but that is quicker than some manage.

Have to say very surprised your eye doctor knew nothing of TA/GCA…very odd.

Personally, I’m not totally convinced it is GCA, but it obviously needs to be ruled out.

Do you have any other classic symptoms of GCA -

Raised ESR or CRP levels (markers of inflammation in body)

Persistent, severe head pain, usually in your temple area.

Scalp tenderness.

Jaw pain when you chew or open your mouth wide.

Fever.

Fatigue.

Unintended weight loss.

Vision loss or double vision, particularly in people who also have jaw pain.

Bilateral pain in shoulders.

Please let us know how you get on, but obviously if things suddenly deteriorate then you need to visit ED as a matter of urgency.

[Elizabeth55 in reply to DorsetLady]

I have the pain in the temple area- I call it bein pain because it feels like a vein throbbing- not a headache.Usually sleepy and very tired at night.

No pain innthe shoulders but it hurts to stretch my arm to the side. Like there is a muscle stuck.

No jaw pain

My left eye is weaker and sometimes it feels strange like it is wet or something.

[DorsetLady PMRGCAuk volunteer in reply to Elizabeth55]

If it’s one sided then less likely to be GCA (won’t say it can’t be, because it could).

However from my own experience and all I’ve read about GCA, I am still a bit doubtful - but any new headache should be investigated- and at least your GP has considered it. There is obviously something amiss, but tbh I’m not sure what.

As I said please let us know outcome and fingers crossed it’s not GCA or anything as serious.

[Nextoneplease]

Hi Elizabeth

I’m sorry you have this anxiety without any clear diagnosis. To be honest, GCA is often based on symptoms rather than test results, and of course this is difficult because the prednisone affects the symptoms! So not easy to diagnose.

I can only endorse DorsetLady’s very clear list of symptoms, and agree that if your condition worsens, you should attend the ED for an assessment.

One thing I am not clear about, is why you are on 20mg prednisone. Generally this would be a dose appropriate to PMR ( polymyalgia rheumatica). Have you been diagnosed with this?

All the best

Nextoneplease x

[Elizabeth55 in reply to Nextoneplease]

I haven’t been diagnosed with anything yet.I have an appointment with a vascular surgeon for Thursday. The rheumatologist for January so I need one that is sooner.

I have had back stiffness for years. When my head goes back I feel it in the spine. Also stiff neck so when I look to the sides I feel the stiffness.

[yorkieme in reply to Elizabeth55]

I cannot comment or advise on the issue of GCA but it may be worth looking into a good physio' who could massage the sternocleidomastoid muscle and provide you with exercises to soften it up.Quite often this can be the cause of the kind of pain that you refer to when rotating your neck,the deltoids could equally need some work but having gone through a similar problem it can help to get the correct exercises.

[PMRpro Ambassador in reply to Elizabeth55]

Why on earth a vascular SURGEON? They are less likely to know about GCA than an eye doctor!

[SheffieldJane]

I am very surprised that your eye doctor was not familiar with GCA. I imagine that as a significant cause of sight loss he would be totally familiar with it. I hope that you get better help with your Vascular doctor this week!

[Elizabeth55 in reply to SheffieldJane]

Yes I agree and I feel disappointed since it has been over 3 months since I saw him twice. I know the sooner we tackle any problems then better results we get. I also made the wrong choices by thinking it was my back causing the pain.

[SheffieldJane in reply to Elizabeth55]

It is very hard not to point doctors in the wrong direction. I know from my awful pre-diagnosis period. Good luck!

[Elizabeth55 in reply to SheffieldJane]

Thank you all. I will update once I have more information. I am hopeful now that maybe it isn’t GCA. Thanks for replying. It is so scary when one finds out that there is something wrong inside that can cause so much pain and anxiety.

[winfong]

I feel for you. This stuff can be very confusing & scary at the start. Please keep us up to date with what happens.

[Bcol]

Morning Elizabeth, nothing much to add to the already excellent comments already made, the doctor prescribed you you with 20mg of Pred has taking that every day made any differance in your pain or stiffness?

[Elizabeth55 in reply to Bcol]

It has given me a little sense of security as I was panicking about my eyes since I do feel that my left eye is going through something not good.I was contemplating going to the hospital. The pain on the vein is less strong but I still feel something there. I am also praying. It is a scary time for me and my family.

[PMRpro Ambassador in reply to Elizabeth55]

If you are sure it is pain on the vein in the forehead, then it is unlikely to be GCA -which ONLY affects arteries. Where on your forehead is the pain?

[Elizabeth55 in reply to PMRpro]

The pain is on the side of the head next to the left eye. My eyes just feel weak too.

[PMRpro Ambassador in reply to Elizabeth55]

What do you mean by "weak"?

[Elizabeth55 in reply to PMRpro]

They sometimes feel like it is cloudy and like it is grainy inside and there is a film in front. Then it goes away

[Nextoneplease in reply to Elizabeth55]

Have you been checked for cataracts?

[PMRpro Ambassador in reply to Elizabeth55]

Those could be signs of dry eyes - do you find you get streaming eyes, watery tears? Are they gritty in the mornings? It is quite common in many autoimmune conditions. If so, then you can get artificial tears and sprays from the doctor/chemist/optician which will ease the symptoms. That is always worth a try. And try to limit the time you spend on screens, whatever you use. Or consciously blink more - we tend not to blink as much when looking at things on a screenand that makes dry eyes even worse.

[Bcol]

Hi again, yes, I can understand the worry, anything to do with eyes is always a scary time and hopefully the doc on Thursday will come up a diagnosis. Did the Pred help with the neck and back pain?

[Elizabeth55 in reply to Bcol]

The pred has helped some with the temple pain although I still feel it a little. It hasn’t helped with the stiffness on the neck and back.

[Elizabeth55 in reply to Elizabeth55]

Hello Everyone,Thank you all for replying to my post.

I went to the hospital last night because of the constant pain on the vein.

I had a catscan done and it turns out I might have Chiari malformation and not temporal arteritis. The next step is to find a neurosurgeon who specializes in Chiari malformation since I might need surgery.

I appreciate all your advice so much.

[PMRpro Ambassador in reply to Elizabeth55]

I THINK there is still someone else on the forum with Chiari maformation. It is a rare alternative - but the symptoms if it and GCA do overlap. So pleased someone looked a bit further.