Please need some Guidance on if GCA is possible?

Hi, I am new here and will give the reader digest version of my situation and see what any of you think. First I am 50 year old I, female and have been diagnosed with fibromyalgia, and osteoarthritis. Recently about three weeks ago my right eye began twitching almost constantly every day off and on all day. Then it finally stopped and a stabbing pain that was in behind the eye, and gave me like a temple headache and a really sore neck and shoulders started and my jaw was very tender on the same side as the eye that was twitching and had the pain, also vision seem blurry. So went to optometrist. She did eye exams and wrote up a report to send to my family doctor. Also said I needed to start wearing glasses full time. The next day my family doctors office called me saying I needed to come in right away that day. So went in and it was mentioned of possible Temporal Arteritis and or Polymyalgia Rheumatica. So was prescribed 50 mg of predisone for 5 days then go to 40mg etc. was also then referred to an opthmologist, he also examined my eyes and then ordered some blood tests and said he wanted to get me into a eye clinic to possible do an Temporal Arterial Biopsy to rule out Giant Cell. I got called in today August 8th 2016 thinking I was going to have the biopsy, but was basically told I am too young for Temporal Arteritis and my ESR and CRP were not elevated. Basically it was blamed on my fibromyalgia, but I have never had this problem before and I am worried I may wake up with a blind eye. I have read on a few sites you can have Temporal Arteritis and not be 70 or 80 years old and also have normal blood test results, but when a biopsy is done it shows that there is Temporal Arteritis present? I guess my question is can you have normal blood test results and be a 50 year old woman and still possibly have Temporal Arteritis?

18 Replies

  • Misaryk,

    It is possible to be 50, have normal blood markers and have temporal arteritis or Giant Cell Arterits, GCA. A temporal biopsy sometimes shows the giant cells in the biopsy, but not always. However, the biopsy is the only absolute indicator of GCA if the biopsy is positive. You are not too young to have GCA, but many physicians go by age for diagnosis. The important facts are your symptoms.

    What did your ophthalmologist think when you were examined. If you continue to have severe pain in the temple area, jaw pain when eating, tenderness in your scalp area, and vision changes, go to the ER!

    Are you still taking the Prednisone? You need to be on 40-60mg initially for the GCA. Are you going to see a rheumatologist? They are usually more skilled with diagnosing GCA and PMR.

    I wish you the best in determining what is going on, and finding a doctor who will really listen to you.

  • Hi Joyful Thank you so much for replying so fast. When this whole thing was first mentioned to me about CGA and Polymyalgia Rheumatica I have to be honest I have never heard of them up till this point. When he (the doctor said) I can in good faith put you through a biopsy, when I don't really feel it is CGA, I was thinking not that I wanted the biopsy, but I thought it was kind of a good idea so as to completely rule it out. He him stuck on the fact I was 50 and once the fibro came to light it was pushed onto, oh you can have scalp pain and neck and shoulder pain and what not from that. I think people diagnosed with fibromyalgia are not taken very seriously unfortunately, like we are just crazy and enjoy making things up. I am now tapered down to 30 mg of predisone and my rheumy isn't back until August 15th unfortunately. Still am having the scalp tenderness as of today, and blurry vision and a dull headache.

  • I am so sorry to hear about your symptoms. The good news is that you are on steroids which can stop the blindness and also that you are aware of GCA. It is the poor people who have never heard of it and are poo pooed by the medical profession who can really be in trouble. If you are having symptoms push up your pred, until it relieves them.

    In fact if you had a biopsy now it is unlikely it would come out positive anyway as the pred will have sorted it out.

    I have come across medics who do not believe fybromyalgia even exists!!!

  • Hi Mysaryk, What a worrying time you are having! The good thing is that a positive result for GCA would result in the high dose Prednisolone treatment you have been prescribed. The only symptom I have not shared with you ( PMR diagnosis) is the blurred vision and that's the one my GP asks about. Certainly had the jaw pain the twitching eye and the tender scalp. I am 10 years older than you but diseases are no respecters of statistics. Also medics are under pressure to cut costs and that can make them deny us expensive tests. ER is an option worth considering, they will follow through, you are in the system. My friend has a Fibromyalgia diagnosis and she is clearly suffering and yet reports the kind of dismissive ness she experiences at the hands of doctors. You need to power on through and get your mind put at rest. Wishing you the very best.

  • Hi SheffieldJane, thank you so much for replying. When I mentioned that the eye that was having the stabbing pain, twitched everyday straight for three weeks before the pain, it was like hmmm no big deal, nothing I said seemed to bring up red flags yet two different doctors felt the need to get me to this eye clinic and I must say in a pretty speedy time. I am a little skeptical of the medical profession , for when I was 34 I was diagnosed with cervical cancer. Went every year for the pap test. The year before I was told I had cancer, my results were "normal". I read up on cervical cancer and it is one of the more slow growing cancers, usually taking around 5 years before becoming actual cancer so........what the heck? Then when I was in the hospital after having the radical hysterectomy, 18 hours after my operation this nurse comes into my room, and says she is there to take my staples/stitches out. I am like What! I just had my surgery, she kept arguing with me so I thought ok maybe this is a new protocol. Anyways long story short because of her taking out a few stitches way too soon, I ended up with two very bad infections. So I don't fully trust the everything I am told by medical people, a little gun shy. lol :p

  • Reminds me of a junior nurse trying to pull out a drain in my post gall-bladder wound! Alas it was still attached to a vacuum pump under the bed which she hadn't spotted. It was quite a tug of war until staff nurse spotted it! Quickly sorted with a swift reprimand! Agree, a lot can happen very easily in NHS, but we all learn by our mistakes! Don't let them get away with ignoring you and get to Eye Hospital if you see any ink-spots! I didn't make it quick enough and it lost my vision in one eye. Good luck in getting it sorted.

  • Your story makes me angry on your behalf. No wonder you take what they say with a pinch of salt! 😡

  • Thanks, I am grateful that the operation was the cure for cervical cancer, but the darn after care wasn't the greatest. When I was in Cancercare for the 5 year follow up, I asked how I went from normal pap to cancerous and the reply I got is, some people sometimes slip through the cracks. I guess that's true, but no very reassuring. : /

  • Hi misaryk,

    Sorry to hear about your problems.

    Obviously your doctor initially thought of GCA, hence the high dose of Pred, so one wonders why he rejected it as soon as the 'expected' blood tests didn't tally with that. Yes it is unusual to have GCA in your 50s and no raised blood markers, but certainly not unheard of, and as always there's always the exception to the rule!

    FYI a biopsy doesn't always show GCA, if the piece of artery removed is not affected then the test comes back as negative, so that is not 100% accurate either!

    Your symptoms certainly do sound like GCA, and at high levels the Pred should have controlled the majority of the symptoms, however it is normal to stay at each level for longer than 5 days. The Pred needs time to get a hold of the inflammation, and that may well take longer than 5 days. After that, as you reduce you still need to take a high enough dose to keep that inflammation under control. Your continued pains would suggest that is not happening at present.

    As you are on 30mg you should be protected to a certain degree, and are very unlikely to wake up one morning blind - that normally only happens if you are not diagnosed and have not been taking Pred. Take it from one who knows!

    Suggest you stay at 30mg and wait to see Rheumy -if symptoms get any worse then, provided you have enough tablets, either increase back up to 40mg ringing your doctor to tell him what you've done or attend your ER.

    Good luck

  • misaryk, great family doctor who was on-the-ball, but disgraceful and unprofessional advice from the clinic!

    It is perfectly possible to have Temporal Arteritis at a very young age - my friend's young teenage neighbour was prescribed with it, and a young man I believe in his 20's was found at autopsy to have been suffering from TA.

    Not everyone has raised ESR and CRP markers with PMR and/or GCA. But even if your markers were raised at diagnosis, it is quite possible that they had reduced back down having been on high dose steroids for a couple of weeks. It is true that a biopsy may not give a positive result anyway, because such a small portion of artery is removed that the large cells they are looking for can escape the tiny piece biopsied. So whereas a positive biopsy is useful for future queries, a negative biopsy does not rule out TA.

    Did the high dose steroids resolve you pain in a short time? If so, that could be taken as proof of diagnosis, in which case, if it were me, I would not reduce too soon from the higher doses but arrange an immediate appointment with a rheumatologist, privately if at all possible if other routes fail.

    I do hope that at least your pain has eased on the steroids but do come back and let us know how you get on.

  • Thank you everyone for all your replies and valuable info! So much appreciated. I have an appointment with my Rheumy for August 18th was the soonest I could get in since she isn't back until the 15th. I will keep you guys posted.

  • Hi misaryk,

    Normal bloods seems to cover a wide range of numbers and how can anyone now whats normal for you unless you are tested when free of symptoms? I was diagnosed first with PMR then with GCA at 54. Blood tests were a bit above normal, not significantly, but symptoms were there and once i was on a higher level of perd. then ESR dropped a lot and pain went away. (Then back then away then back and away again...they joys!) So yes, unfortunately it is possible to be 50, have normal bloods and still have GCA. Hope in your case it isn't but hope is not enough, its too dangerous to leave it and wait to see what happens.

    i wish you good luck and better health .

  • Hi again everyone, I am so glad I have found you wonderful group of people! I forgot to mention when I was at the "specialist" at the Eye Clinic which wasn't really interested it seemed in listening to my symptoms said. "I don't feel you probably need to be on the prednisone either, I believe it is more to do with your fibromyalgia. So since you have only been taking it for 12 days now you could just stop taking it. Unless you want to wait to speak with your rheumatologist" I haven't stopped and looked up what would happen if someone did just stop and from what I read there is a possibility of cardiac arrest. I truly believe that when some doctors have been specializing for quite some time they become complacent and forget they are dealing with live feeling human beings. Thank goodness I don't fully trust everything doctors say to me because of past experiences.

  • Hi. Just to let you know I was diagnosed with Gca and Pmr at age 49 over 2 years ago. I started on 40 mg of steroids for 10 weeks as it took some time for headaches to reduce. I actually had the artery biopsy too which was negative but high ESR and CRP bloods. I also have been diagnosed with Fibromyalgia for 9 years. I think it seems to becoming more common for younger people to be diagnosed with these conditions so not unheard off. I was diagnosed by an Neurologist who I see regularly and he advises my GP on treatment. Have seen a Rheumatologist just twice over the last 2 years.

  • All been said. The only question I have is where are you (-ish). They are wrong - you don't have to have raised ESR/CRP, 20% of patients don't and it is more likely amongst younger patients. The patient who was diagnosed at post mortem that Celtic mentions was 37 in fact, in South Wales.

    There are also papers in the medical literature warning about assuming younger patients cannot have GCA and so missing it.

    Other question - has your fibro improved on the high dose pred?

  • Hi all

    I was reading all of your stories and thinking i might have this condition as well. Even though none of the doctors that I went to take me siriously due to my age which is 37. When you talk about pain and tenderness I do have them both pain in my left siide that I feel is like burning and stabbing which goes down to my leg as well sometimes it numbs my leg. When it travels back up to my head it goes to my temple and eye.

    Recently when I wake up in the mornings I feel pressure in my left eye and I can see my airs which is like a dime size in a dark. When I sit up from the sleeping position I see little black with it. It's like when you stand up suddenly you see black for few seconds this happens only for my left eye.

    Then the shadow of blackness or darkness slowly slowly disappear when I am in siting position but any time I liy down and tries to sit up this thing happens.

    I feel the pain in my left temple that goes to my left side of the scalp and eyebrow. It makes me to grab and pull the hair of that area hoping to relieve the pain.

    Sometimes it gets better but sometimes it doesn't, I don't get the jaw pain even when I eat but I get stabbing and twitching only in my upper left side of my jaw and teeth.

    I have the pain and problem with my left side of my neck as well that goes to my left back of my shoulder.

    I just had an brain MRI that showed several tiny lesions on both of my frontal lobs that are nonspesefic but the radiologyist sugested diffrent conditions like Vascular, infections and not completely excluding vasculitis but my dr is not taking it siriously.

    However, I've pushed him for blood tests due to the MRI findings and he ordered CR, ESR, ANA, Lupes, and Ciliac tests.

    Thanks god they all came back normal and he told me that he couldn't believe that I would suffere from either GCA or Vasculities due to my age and normal findings soo he dismissed me.

    But I'm afraied due to this pain I would wake up blind one day.

    Will you guys please help me to identify my problem by telling me signs and symptopms in detail. For example when you say blurry vision do you mean you have it all day long?

    Does anyone of you wake up in the morning and have moderate blindness in one of your eye that goes away slowly slowly when you are on sited or standing position?

    I do wear glasses but with glasses my vision gets fixed but I don't know when you say blurry do you mean you see blurry even with your glasses on?

    When you say jaw pain do you mean the whole jaw or just part of it like mine?

    Do you get jaw pain when you chew or its there constantly?

    Does your pain travels to your neck back and your leg like mine?

    About Scalp tenderness do you have the tenderness 24/7 or it comes and goes? Does it make you to grab and hold on to your hair to relieve the pain?

    Does your temple in pain all the time or the pain comes and goes?

    I will appreciate your help and time.

    By the way, for the eye pain I went and I saw my eye dr as walkin that's why she couldn't dilate my eyes she just listened to my story and told me it could be eye migraine. But gave me appointment to go on 27 to dilate my eyes. I don't know by doing this if she can see the small veins and arteries of my eye. Or if she can see any inflammation there that might help or push my dr to do further testing.

    Did your eye dr see any inflammation or problem when you were examined?

    I need to understand theses symptopms that I can have better idea about mine.

    I am afraied that one day soon I'll wake up blind. ;(

    I forgot to add sometimes when I sleep on my side I feel pain in my left temple and eye and sometimes I don't.

  • mel-21, Just looking at your descriptions and I wonder if you have been referred to a neurologist as you may have some sort of neuralgia. Trigeminal neuralgia, for example, can be excruciating.

    If your visual disturbances get worse please take yourself to the emergency department. If it's GCA it should be treated as seriously as a stroke or heart attack and, no, you are, unfortunately, not too young to have GCA although it is unusual.

  • Thank you I will definitely do that HeronNS.

You may also like...