Advice needed

[dizzyblond1]

Hi my Gp, Rhumatologost and the optition all day I don’t have GCA and won’t do a biopsy .I have all the symptoms of GCA minus weight loss and vision problems should I take their word or push for a definitive answer ?

Thank you

[MhairiP]

Sorry you've got concerns about your diagnosis & treatment. What symptoms do you have? How long have you had them for? What tests have been carried out, e.g. blood tests?

[dizzyblond1 in reply to MhairiP]

Hi thank you for taking the time to ask I have had a headache for about 9 weeks now not awful but always there , Jaw pain but it doesn’t seem to be worse on eating ? Terrible neck pain , I have a very slightly raised ESR , CRP and ferritin levels but have had theses for over a year now . It’s the headache which is in my temple area and going over to my eyes a I do have a sore scalp but that comes and goes . I have sinus issues and put it all down to that but I’m not sure ? Sorry it’s so long .

[MhairiP in reply to dizzyblond1]

Thanks for giving more info. It's possible your pain could be due to sinus issues - I'm sure someone with more expertise than me will be along soon to help out.

[dizzyblond1 in reply to MhairiP]

Thank you

[jinasc]

So what do they think you have?

Have you are are you on pred and if so, how much?

You obviously have something going on and I would be back to my GP with a tough mate and a list of question, a copy for you and a copy for the GP.

And a copy of the BSR Guidelines on the Diagnosis and Treatment of GCA.

A biopsy can prove negative in heaps of cases, the medical symptoms over-ride.

[dizzyblond1 in reply to jinasc]

I have Lyme disease and avoid steroids like the plague but if I had to take them I would , no one had suggested anything , when I voiced my concerns about GCA I was almost laughed at as I said I have sinus issues and I do have problems with my cervical spine but I never get headaches and this has gone in for ages

[SheffieldJane]

Hi, It’s horrible to still be worried after all that. What are your symptoms? You could always leap frog your doctors and go to A&E if your symptoms are frightening you. They should treat suspected GCA with the same urgency as they would treat the symptoms of a stroke. Wishing you well and a correct diagnosis.

[SheffieldJane]

PS. I do get headaches and neck ache with Cervical Spondylosis. Perhaps your spinal condition has changed and maybe an X Ray and or MRI Scan is called for. 8 weeks is a long time to have worrying pain.

A temporary dose of Prednisalone could be tried to see if it eases your symptoms, that would be another indicator.

[Nuff1]

Wondering whee the signiicance of weight loss comes in - there was no check re this when OH was in Rapid Assessment Unit and he was treated for GCA and had biopsy a week after leaving the unit.

No sign or mention of weight loss.

[Soraya_PMR in reply to Nuff1]

Unintentional weight loss does happen for some with GCA & PMR. But it’s not a given.

I lost about 10lbs with PMR. (Pre pred)

[PMRnewbie2017]

Could you tell us more about your Lyme disease? When were you diagnosed? What treatment have you received? What symptoms did you get?

Lyme is a horrible disease which has a huge range of effects and symptoms. When I first became unwell my Gp tested me for Lyme to rule it out.

[dizzyblond1 in reply to PMRnewbie2017]

Well if you have an hour or two to spare 😀was bitten in 2000 took 11 years to get diagnosed and that was from a private hospital in Germany a year of pulsing different antibiotics never been ill in my life till then , many different things wrong since then from stubborn hyemolytic anemia , cervical spondylitis, lower back disc problems no catralige in both big toes sinus issues stomach issues but I think that mainly down to all the treatments there is more but I won’t bore you so my problem is what is causing what 😩😩 I was on high doses of steroids for the anemia but they didn’t work at all no side effects no reduction in symptoms was about to have my spleen out and all of a sudden my body started to work again ?? Since learned steroids are the worst thing any one with Lyme can take so I’m so scared I may have GCA as I’ll have no choice . Said it was long 😀

[PMRnewbie2017 in reply to dizzyblond1]

OMG, your poor thing. Your medical history is so complicated I wouldn't know where to start. In case it helps you, my story,briefly, is as follows:

I have been diagnosed with GCA and PMR (Nov2017) .Never had a biopsy because my GP started me on Pred at 30mg and by the time I saw a Rheumy (only 6 weeks later) he decided there would be no point. I never had prominent temporal arteries, no problems with eyesight. Had stiff neck, pain in the back of my head at occiput, odd pins and needles feeling on the upper right quadrant of my face, tender spine for 2 days and excruciating headache while spine was sore. At the time I was concerned about meningitis because I also had a cold but had no nausea or photophobia. Anyway pred took away everything and Rheumy said "classic GCA" and I wear the label reluctantly.

You clearly need to see a specialist who can dig through everything to help you. Are you in UK? Perhaps we can collectively recommend someone near to you.

[dizzyblond1 in reply to PMRnewbie2017]

Thank you I’ve seen the rheumatologist he says it’s difficult stay not GCA ? So does the GP and the optition ? At a loss just going to try again at the GP but I’m

Not sure it’s going to be of any use 😩

[dizzyblond1 in reply to dizzyblond1]

Sorry definitely not

[Chihuahua1]

I suffer migraine on a regular basis and have found that when I started with PMR the frequency of migraine increased also. Whether it was down to PMR or prednisolone I couldn't say, but it has taken a long time for the migraines to settle back down to what was my usual level and frequency. I too would look into the possibility that your cervical issues may be a cause of the headaches, but if you show any visual disturbance and/or increase of existing symptoms along with the tender scalp and jaw pain then go straight to A&E.Better safe than sorry. However worrying about the headache can actually make a headache worse with stress and tension.

[dizzyblond1 in reply to Chihuahua1]

Thank you I have had jaw pain but not when I eat ? No real eye issues I suffer from dry eyes so have blurred vision sometimes anyway 😩

[pollymarierose]

I too have all of the symptoms og gca and am now being tested for myosthinia gravis. Pmr/gca have a lot of the same symptoms. Leave no stone unturned.

[dizzyblond1 in reply to pollymarierose]

Oh bless you just looked it up I don’t have any muscle weakness or swollowing issues , wishing you all the best

[pollymarierose in reply to dizzyblond1]

Thank you 🙂

[PMRpro Ambassador]

If you can't have a biopsy you can't get a definitive answer unless the ultrasound test is available where you are. The biopsy is 100% accurate IF (and only if) the result is positive, if it is negative it becomes a clinical decision, based on symptoms, because a negative test doesn't mean you don't have GCA, just that they didn't see what they were looking for, the giant cells.

The symptoms of GCA can also be due to other things and nothing you describe is 100% definitively GCA, particularly since you say you don't have jaw pain when eating and no visual symptoms. If the optician can see nothing then I fear there is little you can do except look for another doctor who will consider other options.