GCA concern

[Liby57]

Ok, so I’m sat watching tv and have just felt a bulging vein at my temple, is this likely to be GCA onset? Really worried about it. As you have probably established from my posts, I do have anxiety especially since starting the journey of PMR. I am down to 2mg Pred and was hoping to reduce further. PMR has been very difficult to accept but the thought of GCA and the possibility of losing my vision absolutely terrifies me.

[PMRpro Ambassador]

Not if it is a vein - GCA affects arteries. Have you any other symptoms?

[Liby57 in reply to PMRpro]

It shows protruding on my temple. I don’t have a headache.

[Liby57 in reply to PMRpro]

It looks like a bulging temple artery because it is colourless. It looks and feels like a bulging of the skin overlying it.

[PMRpro Ambassador in reply to Liby57]

If it is an artery - can you feel a pulse?

[Liby57 in reply to PMRpro]

Yes I can feel a pulse

[PMRpro Ambassador in reply to Liby57]

Most doctors take that as a sign there isn't much going on just there.

[CarolF1312]

Sorry no advice but hope you're okay. It terrifies me too.

[Liby57 in reply to CarolF1312]

Thank you. This forum really helps especially when you need some reassurance, there is a lot of support and good advice. Wishing you all the best.

[SheffieldJane]

Since I have had GCA I have noticed so many visible arteries/ veins on people. It’s probably nothing but let your doctor take a look. My Rheumatologist often feels the area where my temporal arteries are. Be alert for typical GCA symptoms too. My fear went when I got the diagnosis of GCA, having had PMR for 4 years. It used to stalk me. Not now oddly.

[Liby57 in reply to SheffieldJane]

I can’t even get to see a rheumatologist. I have only seen him once when it was first suspected that I had PMR almost 12 months ago.

[SheffieldJane in reply to Liby57]

They will do a telephone or video consultation. Nobody has had a face to face for ages.

[Liby57 in reply to SheffieldJane]

I’ve tried contacting them previously to check when my next review is, they just say they have a huge backlog and will be in touch. They haven’t offered any video calls.

[SheffieldJane in reply to Liby57]

Can you take a good photograph via your phone and send it? Failing that, invest in a morning in A&E. There isn’t the same pressure from COVID anymore and if you thought you were having a stroke you would go. People go with panic attacks. Put your mind at rest. Is your GP equally inaccessible? Do you have a friend or family member who can go with you?

[Liby57 in reply to SheffieldJane]

I have taken a photo.

Artery

[Liby57 in reply to SheffieldJane]

I will contact my GP first ting in the morning. Thank you for your support.

[SheffieldJane in reply to Liby57]

You are going to share it with your doctor I assume? Let us know what happens. So sorry that you have been so worried.

[Liby57 in reply to SheffieldJane]

Thanks Sheffield Jane, I contacted my doctor this morning. She didn’t seem overly concerned but did take bloods to check my CP and ESR, liver, kidney and blood count. I will have results back in 2 days. She did ask me to contact her if I developed a headache or any tenderness., so it’s fingers crossed at the moment .

[SheffieldJane in reply to Liby57]

and breathe! It pays to be vigilant Liby. I hope that all is well. X

[Blurry62]

Call your doctor. Always be on the safe side. I had no headache when an artery presented itself suddenly above my right eyebrow. Went to ER and was diagnosed GCA. Confirmed via biopsy.

Dont panic, but do be proactive.

[AncientMariner]

I am not aware hat your vision cuts out like a switch unless someone has had that experience but for me it is gradual and therefore gives me a warning margin and time to get myself in front of professionals. I personally focus on the "crispness" of the vision in my working eye, I lost sight in the other during my first flare over a 48 hour period. The diagnosis and steroids came too late. If I am loosing sharpness and it starts to look cloudy or Milky I am off to the eye hospital sharpish, I went through that last summer and was on IV Prednisolone within 6 hrs and there was no lasting damage. I don't monitor veins and I never had headaches in the first incident more like a sensation of pressure. For me i will start to get a constellation of indicators gathering, aching shoulder blade (always the left), pain in the back corner of my jaw, either side and a very strange feeling in the skin around my temples/scalp like sunburn. I can get any of these individually from time to time and do not get too alarmed but when they gather together and persist I go to yellow alert, when the sight starts to change too that's Red alert. It is frightening so I completely understand how this can drive someone who is anxious by nature crazy. People can have different journey's with this and symptoms can vary from person to person so log your warning signs in a diary because a pattern is likely to emerge that is YOURS. Have a rock solid action plan in place so it is something you don't have to work out when you are getting panicky, you cant think clearly when you are panicking so have this done and in place as to exactly what you need to do, who you need to contact. I got in the car and timed how long it would take me to get to the eye hospital, where to park, where the entrance/reception is. You don't need to be trying to work all this out when you are in the middle of a flare up and highly anxious. Do this and you will take away a large part of the fear. Anxiety feeds anxiety so take away it's power by forward planning.

[PMRpro Ambassador in reply to AncientMariner]

Patients with few previous signs of GCA have woken in the morning having lost sight overnight. It is, after all, the same as a stroke or heart attack if a clot is the final cause of the ischaemia- and you don't always get TIAs or angina as a warning.

[Liby57 in reply to PMRpro]

Gosh that actually causes me more anxiety, it’s like living with a ticking time bomb.

[PMRpro Ambassador in reply to Liby57]

I realised it probably would - but it is also important that people know that it can happen without warning too.

[Liby57 in reply to PMRpro]

Is it at all possible to get your life back to normal without living in constant fear of getting GCA, going to bed and waking up not being able to see.

[PMRpro Ambassador in reply to Liby57]

I'd say most of us have - I certainly only think about when answering a question/comment here. There are a lot of things far more likely to happen than what is called occult GCA. Just don't ignore signs that need to be taken seriously,

[AncientMariner in reply to Liby57]

Have you heard of the Stoics Liby57? Marcus Aurelius the Roman Emperor helped develop this philosophy which I believe is a good mental buffer when faced with uncertainties and feelings of powerlessness. Essentially make plans for what can be planned against bringing control where it can be applied. The unknowable's in life are legion and would utterly consume and take all joy from us if we constantly dwelt on them, apart from lottery tickets 😀.

[SheffieldJane in reply to Liby57]

You can always go to A&E. My GCA was diagnosed by specialist ultrasound, I was practically symptom free but it was not in my temporal arteries. It was spotted in my armpit therefore it is in my peripheral arteries ( not my Aorta fortunately).

[Liby57 in reply to SheffieldJane]

ThTs interesting, did you have any pain?

[SheffieldJane in reply to Liby57]

I had headaches but nothing unusual, my blood pressure readings differed by about 10 points in each arm. I was on 3 mgs of Pred for PMR. I felt under the weather though. My Rheumatologist is very good on our diseases and thorough.I don’t want to feed your fear. I do know exactly what it feels like though and maybe some sense of self preservation is at work. Have it checked and be mindful of symptoms. X

[Rottsuzi in reply to AncientMariner]

Hi ancientmariner how did they confirm the diagnosis of GCA I am getting tested at the moment I had a mri which was fine just waiting on other tests mri spine and ultrasound, she is not sure it’s GCA but thoughts at first it was neuralgia which I said definitely not it felt different sore jaw right above my ear and very tender scalp at the eye area only right side my eye went cloudy also . She said it’s so difficult to diagnose and the usual your only 50 🤷‍♀️

[AncientMariner in reply to Rottsuzi]

It's quite true that it is not an easy diagnosis to make as a number of conditions overlap in terms of symptoms. It has taken nearly two years to get this diagnosis for myself and it was becoming almost a mantra that I was too young at 53, well I disagreed seem to have won through, well won is perhaps a little optimistic, it isn't much of a prize. I had two arterial biopsies that showed very mild inflammation which was inconclusive, the picture being clouded by the fact that I was already on steroid treatment so essentially the condition was being controlled. It was when I had a serious flare up last year whilst tapering down Prednisolone and ended up staying overnight at the eye hospital on IV Prednisolone things began to change diagnostically. I gave Rheumatologist the family history on my Fathers side of chronic Rheumatoid conditions that lead my Grandmother to be wheelchair bound and blind, her Sister suffered a similar fate and an Uncle too. The sunburn sensation on the scalp prior to my first flare up and loss of sight in the R eye was also quite significant, I had only finished Chemo/Radio for throat cancer two weeks before and had been getting this strange soreness when combing my hair some weeks before that but associated it entirely as a side effect of the cancer treatment it's true significance only becoming apparent a little too late. She combined all the present and historic familial evidence and reached the conclusion that on a balance of probabilities I was suffering from GCA, a rational conclusion in my opinion and very helpful as it opened up a new avenue of treatment with Tocilizumab. Methotrexate was clearly not holding the condition as the Prednisolone reduced so the Tocilizumab was introduced and I have to say I have now gone down to 12.5 mg of Prednisolone without a flare up. I have further to go but am hopeful at last we have got a grip on this Hydra.

[Liby57]

Update on my GCA concern. 2 of my doctors were not concerned about the bulging vein above my eye and I also managed to get an online call with rheumatology who also didn’t think it was anything to worry about as I don’t have any other symptoms. My blood tests were all normal and my CPR is down to to 20. Rheumatology suggested I continue to taper, I am now starting on 1.25mg and at the moment am feeling ok. Hopefully I won’t have a relapse 🤞They also said I will get my F2F appointment with the Rheumatologist in May.

[Liby57]

Hi Elizcarroll thank you for your reply the thought of GCA is really quite worrying and for those that have experienced it, it must have been terrifying at the time. 2 of my doctors were not concerned about the bulging vein above my eye, they said GCA would normally present itself in the temple area and not where I have it. I hope they are right. I also managed to get an online call with rheumatology who also didn’t think it was anything to worry about as I don’t have any other symptoms. The vein has actually gone now so I hope they are all right i their judgement. 🙏

[PMRpro Ambassador in reply to Liby57]

The key is whether it is a VEIN or an ARTERY. There are veins running down the forehead that can become quite prominent - as shown in the 4th picture in this link:

thepmfajournal.com/features...

GCA only affects arteries - and while the temporal artery CAN be in a similar position to the vein shown in the next picture, it isn't quite as superficial and tends to be more to the side and not as vertical.

[Liby57 in reply to PMRpro]

Thank you this is really interesting and reassuring.