GCA symptoms?

[pollymarierose]

I was diagnosed with PMR but not GCA back in January. I saw the opthamologist a week ago and he said if I had it I would notice a sharp pain from my jaw shooting up my temple. I started having that pain about 15 minutes ago on my left side. It went on for about 5 minutes and is lessening up. Is this what it feels like? Is it on one side or both?

[HeronNS]

Interesting that the word "shooting" isn't used in the several descriptions of GCA symptoms I read, more often associated with something like trigeminal neuralgia. I think like so much of PMR/GCA the symptoms vary from person to person, so you should watch out for serious things like visual disturbances, and whether jaw pain is worse when you chew, that kind of thing. If you note anything like that you do need to see a qualified professional asap, at your hospital emergency department if necessary.

What kind of examination did the ophthalmologist do?

[pollymarierose in reply to HeronNS]

Thank you for answering so quickly. I was getting a bit nervous. I have had double vision for months but earlier today was the worst. No matter how hard I strained, I couldn't make out letters or words on anything. The pain is on the left side only and it feels like a sharp pain in my jaw running straight to my temple. It's worse when I talk. I don't have any other symptoms except for loss of appetite and fatigue. I guess I should worry when my vision gets worse again or when temporal pain is on both sides?

[Rimmy in reply to pollymarierose]

I agree in these circumstances prompt medical intervention is important - better to have a 'high degree of suspicion' when eyesight could be at stake.

Best wishes

[pollymarierose in reply to Rimmy]

I agree. Thank you!

[Christophene47 in reply to pollymarierose]

Do be careful. I was first diagnosed with GPA; I was C-ANCA +, but at a low titre. I went to the rheumatologist in the first place b/c of new and strange upper body pain I had never had before. The most bothersome was bicep pain ,collarbone and shoulder pain.

I left the office with a script for Medrol 16 mg/day with dramatic response in about 36 hours. I felt very well for about 7 months. In the meantime, since GPA is serious, I sought and was accepted for a consultation at the vascultis clinic at Johns Hopkins in Batimore, MD.

I had to wait 5 months for that appt. The doctor there took a full hour and a half with me after having carefully reviewed my relevant medical records before I arrived. She gave me a thorough examination. After repeating all blood tests, and adding in some other blood tests, she emailed me in a couple of days to say, in her opinion, she did not think I had GPA. That is where I learned that not all blood labs use the same parameters or techniques, and that doctors have varying opinions about the quality of different large chain blood lab results.

Since my symptoms were very consistent with PMR, the diagnosis was changed and she recommended a very slow taper of methylprednisone at 2.5 mg. less every 3 weeks. I did feel more fatigued, but got down to 8 mg without too much trouble.

One morning, calm, quiet, watching TV morning news, I went blind in my left eye. I am not paniky and waited and in 10 minutes the vision returned. One is supposed to go to Emergency in that scenario. Instead I raised my dose of methylpred back to 16mg. for fear it was giant cell arteritis.

I followed up with Neuro and retina ophthalmologists at the prestigious Wills Eye Hospital in Philadelphia, Pennsylvania. They could find nothing wrong except a notation that the central vein of my left eye could not be visually. seen in photos taken of the back of the eye, and that it was possibly blocked.

Finally, I saw an ophthalmologist, near home, also affiliated with Wills Eye who found the cause. It was a "haze" over that left central vein; she showed me an enlarged photo. The haze looks some thing like a small caterpillar just laying over the surface of the retinal vein. She assured me she could remove it by laser whenever I was ready, and that it would tweak my vision for the better.

So we can't just jump to the conclusion. that every symptom we have is connected to our various autoimmune conditions.

However, should you continue to experience blurry vision, you should be under the care of an opthalmologist to be sure it is not a function of GCA, or another serious conditions. Don't do as I did and not go to Urgence . I only tell this story to illustrate that not every symptom we experience may be related to our rheumatic condition.

After 27 months on methylpred, all ANCA antibodies are negative; I have a new scare to deal with, abnormalities in my red count, and the chance of a bone marrow biopsy being needed. So the stress of that and some personal issues, do not make it a perfect time to work on the last 4 mg slowly. I will get to it.

Best of luck with your vision and everything else.

[pollymarierose in reply to Christophene47]

Thank you very much for your response and help. You were fortunate to go to such prestigious medical centers. I agree that every lab and doctors group gauges their numbers differently. I wish that they would listen more carefully to the patient because we aren't all the same. I had fibromyalgia, RA, CREST for over 30 years and when I woke up one morning feeling like I'd been run over by a semi truck, I knew something was terribly wrong. I was grateful it wasn't both pmr and gca, but I never expected to feel the way I did today. So, it's no longer out of the realm of impossibilities. I'll keep paying attention to my symptoms and won't hesitate to go to urgent care if I need to. Take care and again thank you.

[Christophene47 in reply to pollymarierose]

P.S. Don't wait until the next time your vision gets worse, ask to be referred to another ophthalmologist now. You could have giant cell arteritis; the pain in your temples, pain in jaw , etc. Don't risk your vision by waiting. Your post seems to indicate you have seen an ophthalmologist. What tests were done and what was his/her opinion.? If I may ask?

[pollymarierose in reply to Christophene47]

Oddly, it was just a week ago that I saw the opthamologist. I was with him for at least an hour. He said he didn't think I had gca because I didn't have the jaw pain. He said that my muscles behind eyes had weakened from pmr and something about retinas (or is it corneas ) detaching . Too much information by myself. Husband was at work. I had just seen him a few months earlier because my vision had changed drastically overnight and something horrible was going on with my body. This was was before my diagnosis of pmr. I promise I won't risk my eyesight.

[HeronNS in reply to pollymarierose]

Those visual symptoms as Rimmy says indicate you need prompt medical attention. Please see someone asap, no waiting for an appointment, go to an emergency department.

[fmkkm]

Tomorrow is Saturday so your doctor’s office is probably closed. You are in the US so go to urgent care or an ER tomorrow and get a Sed Rate and CRP rest. You could have pain from tension but if it is GCA you will have inflammation and an increase in these test results.

Also, do your temporal arteries feel enlarged? Do you have a headache? If you already have PMR you are at risk for GCA.

Best /fm

[pollymarierose in reply to fmkkm]

Thank you. I did overdue it a bit on a project this morning. I should have stopped when I had the first signs it was time to quit. (I was cleaning the shower and thought if I finish the shower, I'll clean rest of bathroom tomorrow). So, the pain may have caused stress. So, my markers will be higher if something is going on? My husband's home tomorrow and we already talked about the ER. I appreciate your advice.Take care!

[gifford7]

You have some symptoms pointing to GCA: double vision [diplopia], pain in jaw one side [especially when chewing], loss of appetite, fatigue, polymyalgic symptoms.

Its recommended to get your bloods measured [CRP & ESR] ASAP: if high

it tends to confirm possible GCA and prednisone should be started; typically 60mg.

ER or 24 hour emergency eye doctor. Link to GCA guidelines [BSR]: keepandshare.com/doc/821187...

"Symptoms

. Abrupt-onset headache (usually unilateral in the temporal area and occasionally diffuse or bilateral).

. Scalp pain (diffuse or localized), difficulty in combing hair.

. Jaw and tongue claudication.

. Visual symptoms (amaurosis fugax, blurring and diplopia).

. Systemic symptoms of fever, weight loss, loss of appetite, depression and tiredness.

. Polymyalgic symptoms.

. Limb claudication.

. Fever, weight loss and other constitutional symptoms."

[pollymarierose in reply to gifford7]

Thank you (everyone actually) for hour help. I seem to have every symptom except fever. The jaw pain is gone right now but everything else is there.

[PMRpro Ambassador]

That is only one of several symptoms and not everyone experiences it - what on earth makes them think everybody is the same? There have been several similar comments reported in the last few weeks! AND as Heron says, shooting really isn't the sort of pain most people with GCA describe, that tends to be more a trigeminal nerve or jaw problem - not saying it ISN'T a GCA symptom but there are other things that would come to mind instead or as well as. Not everyone has jaw pain. Or headache. Or anything else if it comes to that: any single symptoms is found in less than half of patient as the thing that sends them to the doctor. More may develop later - but for a small number of patients the first thing they know is when they wake up blind one morning. It is called occult GCA.

But any visual symptoms need checking out, especially transient loss of vision and investigation should be immediate since it can be a sign of a stroke or TIA (mini-stroke). Call the emergency services - delay means it is more difficult to treat successfully and you shouldn't drive for obvious reasons. If you have had double vision for a long time - have they not looked for a reason?

[Christophene47]

Frankly, I don't think a doctor can categorically predict what an attack of GCA feels like; everyone may have a different experience; I agree with HeronNS. The only way one can know if they have GCA is by biopsy of one or both temporal arteries BEFORE being on Prednisone more than 14 days. Even then, it's not definitively accurate .

Whatever the cause of your symptoms, find another opthalmologist. There is no size, one fits all experience. There can be other reasons why you are having visual disturbances or temporary loss of vision other than GCA. My workup included an ophthalmological exam with eyes dilated, Doppler testing of my carotid arteries and orbits, photographs taken of the back of the eye, an echocardiogram. In the end, it was a haze (which can be easily removed by laser)over my left retinal central vein (not artery), not associated with GCA. GCA can cause hearing problems, temporal headaches, visual problems such as you are experiencing . If you are having these symptoms now, go to Urgence at your closest hospital. Don't take a chance. Sight is one of our most precious senses.

[Christophene47]

If you cannot see well enough to drive and have no one to take you, call for an ambulance. Based on what you are saying , it doesn't sound like you should be driving. Don't take chances with your vision.

[Christophene47]

I think I sent a reply to myself; if you are experiencing these symptoms as you were posting, go to your closest Urgence department at your closest hospital NOW. If you have no one to drive you, and it doesn't sound like you should be driving, call for an ambulance. Don't take a chance.

[pollymarierose in reply to Christophene47]

No jaw pain or fever since Friday. I promised myself I would call for ambulance if I needed. I carry my cell phone everywhere I go in house. I don't go away from home without someone else, which has left me housebound for the last 4 days. Thank you for caring. 💖