Symptoms of Temporal arteritis but blood tests normal

[piafchips]

Hi all , i recently went to the g.p. after weeks of headaches , scalp tenderness and temple on one side so sore i could not touch it . He suggested it was Temporal arteritis and sent me for blood tests . Test results normal so he gave me anti-inflammatories for two weeks . I do feel better but i wonder how often blood tests come back normal when there is a problem there ?? Am i over reacting in worrying about the symptoms flaring up again ? G.P. suggested that if symptoms came back i should go for a scan , would have to pay for it myself as waiting lists are long etc., for public health care .

[Runrig01]

Hi piafchips,

I have had symptoms of GCA for 5 weeks now. I have had burning pains in the temples, cramping in my jaws and tingling in my tongue. Some research papers suggest 2-4% of patients can have normal bloods. I have seen A& E and GPs who on the whole have dismissed GCA is causing symptoms. However one GP has "thought outside the box" and increased my Prednisolone from 9mgs to initially 20mgs, then 4 days later to 30mgs. The tongue pain has gone and temple pains are now a mild burning pain, but I am much better. I am due to see my rheumy on the 1st of May so will see what she says. My GP has reassured me that the current dose is protecting my eyesight so if I have "atypical GCA" my sight should not suffer meantime, so I can rest easier now. I am glad to hear the anti-inflammatories are working, I would suspect if it was GCA non steroidals would not hold back the inflammation. But I could be wrong. Good luck and hope you recover quickly.

Runtig

[piafchips in reply to Runrig01]

Hi runrig01 , thank you for your reply , I have finished the course of anti inflammatories now and beginning to get headaches again. Nothing major , but also a general feeling of tirednes aches and pains in my shoulder and top of my arm , stiffness .. just feel like i have aged years in a few weeks ! I am 58 and the gp said we all get aches and pains as we get older . Thank you for your kind wishes , p

[Polywotsit PMRGCAuk team member]

Hi Piafchips, the gp might well be thinking that there could be something else the matter such as crowned dens syndrome, in which crystals form on the vertebra at the base of the skull. This can be detected by CT scan. A negative scan won't help you know whether or not you have GCA. But the idea that you should have to pay yourself for a scan is surely putting the cart before the horse. If you have suspected GCA you are a medical emergency and should get an emergency referral to be seen by a rheumatologist.

[piafchips in reply to Polywotsit]

Hi Kate , thank you for your quick reply , gp obviously didn't feel symptoms warranted an emergency referral so i am considering asking to see another gp at the same practise for a second opinion . Finished anti inflammatories and symptoms flaring up again . Will give it a few days and see how i feel then . Thank you again P

[lynabelle]

I was like this for months , headache aches and pains fatigue and when my eyesight was blurred I when back to the doctors for about the 5th time and saw a different GP who sent me straight to a&e my esr was up slightly and I was put on 30mgs of pred.

My advice to you is to keep going , you know when you are not right I felt about 80 and I am 59 and was told I was too young to have GCA , also I had a biopsy that came back negative, good luck and don't take no for an answer

[Loco99]

I have very little experience of GCA but always get exasperated when I hear about doctors saying things like ' you are too young ' to have a certain condition, you could always be the exception to the rule! I read of someone on another forum who had PMR in her thirties. What do they expect you to do? Wait until you are old enough to be treated!

[Hidden]

Dear Piafchips

Please do not wait a few days if your symptoms have returned. Either see another GP at the practice or if your headache is severe consider a visit to A & E and tell them you are being investigated for GCA. My blood levels have always remained about normal and diagnosis has remained a grey area BUT you cannot take the risk of losing your sight. Better to be safe than sorry. Please let us know how you get on.

Margaret

[Namurt in reply to Hidden]

I had never had headaches and suddenly developed a severe one lasting 4 days ,...then arm numbness, I went to ER and they did bloodwork ,scans , etc ..found NOTHING and sent me home with Tylenol saying it was a complex migraine. A few weeks later I started seeing double ..fortunately my optometrist sent me immediately to a neuro opthamologist. at EYE Institute, The .first bloodwork was normal, second only a week later (which they were not going to bother doing , but fortunately did) was was positive for GCA and I was prescribed 80 mgs prednisone, had temporal biopsy 2 days later on both temples to confirm GCA. This is difficult for GP to diagnose as they don't see that disease often. Mine was at a severe level and could have lost my sight immediately and permanently.. Sorry, I say all this to say please do not wait or take chances, I also felt I aged from feeling 50 to 80 years old with this condition. I still learned things much later than I should have , one being it is necessary to be referred to a rheumatologist to monitor and coordinate all the other things that occur when on prednisone.I have a great GP but really that is not his area of expertise and we need someone who deals with all these complications on a daily basis.

[Kpittman in reply to Namurt]

How did you feel once starting the Prednisone? I'm on day two of mines and still feel pain to my upper arm and right head area. Have not had a biopsy yet and does the biopsy hurt severely and is it dangerous?

[Hidden]

Piafchips, don't wait for a few days, if it is GCA is needs to be dealt with today and not in a few days time. Your eyesight is at risk and if you lose partial or total vision once it goes there is no getting it back.

Some people with both PMR and/or GCA never have raised markers. You should be dealt with as an emergency and a temporal lobe biopsy. Download the BSR Guidelines and Treatment of GCA and PMR, they can be found on the NHS website and the BSR website.

Do act today and not tomorrow, If we are wrong, we are wrong there is nothing lost.

[DorsetLady PMRGCAuk volunteer]

Hiya piafchips,

As someone who has lost the sight in one eye, I re-iterate all that's been said. Once sight is gone, it ain't coming back! Nor does it make life any easier! Good Luck, Dorset Lady

[Runrig01]

Hi Piafchips,

Hope you have heeded the advice offered by the people here and had your headaches checked out. I found this article in the American college of Rheumatology, I thought it might be interesting reading for you. It shows 4% of people with biopsy proven GCA had normal ESR and normal CRP.

blackwellpublishing.com/acr...

I am waiting to see my rheumy next week re my symptoms, but at least I am on 30mgs Prednisolone whilst waiting to see her. However I still have burning pain in the temples, although it is not as severe as it was 2 weeks ago. My tongue no longer tingles, but feels as if I have burnt it. Exhaustion I am finding hard to deal with, I have not felt like this since I first started getting PMR symptoms in Oct 2011.

Good luck, Runrig

[Rancho]

Hi Everyone,

I've had PMR for about 3 years kept under control on 5mg maintenance dose of pred. Over Easter I started to get blurred vision followed by double vision and other indicators of temporal arteritis. Fortunately I am a bit of an amateur internet medical 'student' so knew the indicators and as I was in Spain self medicated 50mg of pred, flew back to UK and presented at A & E. Bit worrying when the doctor looked GCA up on Wikipedia and asked me if my symptoms matched it! Medical Team called down and put me on 60mg pred, referral to vascular surgeons for biopsy and referral to eye specialists and to my Consultant Rhemi. Only problem was that most of these appointments were not forthcoming and in the end the biopsy was carried out by the eye ward over a week after presentation and as my Rheumi then said it was a waste of time as the pred I had taken for a week would render the biopsy negative.

For such a serious condition the lack of knowledge in A & E and lack of a clear care pathway with patient coordination is worrying and breathtaking. It took me 5 minutes to find various clinical guidelines on the net but our NHS is relying on Wikipedia.

I am a 57 year old man who is capable of researching and informing myself because otherwise I dread to think of what might have happened.

All I would say, based on my experience, is INSIST that you be taken seriously and do not put off going to A & E. You have nothing to lose but your sight and that is too precious to throw away because of a lack of awareness in the NHS.

I have to say that individually I have had excellent care but it is the danger of falling between different specialists that can potentially cause problems.

Once I have hopefully recovered I will write my experience up, not as a complaint, but as a contribution to trying to make support for CGA sufferers more consistent and focussed.

[Celtic PMRGCAuk volunteer]

Hi Rancho

I'm so sorry to hear that you've been diagnosed with GCA after 3 years with PMR but glad to hear that, in spite of dillydallying over appointments, you were correctly diagnosed and the right dosage prescribed before any damage to your eyesight.

Yes it does shake one's confidence a bit when a medic has to search on Wikipedia in front of you, but to be fair, GCA is a rare condition and at least he did investigate.

Hopefully with research gathering apace, together with a fast-track referral system, more GPs will become aware of GCA and the need for it to be treated as a medical emergency.

I hope you will continue smoothly to recovery.

[piafchips]

Just an update on symptoms and gp visits . Returned to g.p practise in May as i had developed severe pain in upper left arm . In the time between my first couple of visits complaining about headache and scalp tenderness i had experienced worsening stiffness on waking particularly in shoulders and hips . This would ease as the day went on Constantly fatigued and beginning to feel very low . Saw a different g.p. in the same practise and he suggested arthritis in left arm and possibly hip . I asked him to refer me to a rheumatologist and his response was 'it is a bit early for that .'. Asked him again as i said i been reading about symptoms of GCA/ PMR and felt they applied to how i was feeling . Again he refused and gave me a letter for x ray dept of local hospital . He prescribed anti-inflammatories , pain killers and prednisone . (Pred for 5 days and the rest for two weeks ). Hospital could only give me an appointment for July . Felt almost normal after 72 hours . After i stopped taking the prednisone the pain returned as bad as before , anti inflammatories 'took the edge off ' but i kept falling asleep and felt like i was in a fog all the time . Last Tuesday the pain was so bad i went to a private x ray clinic , was in so much pain the radiologist had to help me put gown on . Back to g.p. practise the next day for results . Insisted on seeing a different g.p . (last one of the three !). He said the x rays showed very little and he wouldn't have sent me for them in the first place . I had written down my symptoms and what happened at each of my previous visits to the practise but he said he didn't want to know as he preferred to make his own diagnosis . He gave me a a cortisone injection - shoulder area . Called nurse in to do blood tests and asked me if i could get them to hospital lab within the hour , which i did . Due back to see him tomorrow . The injection worked like a miracle over the first few days . Most of the pain was gone on Thursday , better again on Friday , by Saturday i could put my coat on etc., which i hadn't been able to do for weeks . Yesterday (Monday ,) pain began to increase again , not as severe but back to what it was like when it began . Today woke up stiff and sore again in shoulders neck , left hip and thigh . Hoping when i see him tomorrrow that the blood tests or return of symptoms will have convinced him . ...

[Hidden in reply to piafchips]

Hi,

Did you ever have a temporal artery biopsy to confirm GCA? What was the results? I have had all the same symptoms as yourself and also had negative blood work and biopsy results, yet all the symptoms of GCA and the symptoms are only relieved with prednisone.