New to group and looking for advice

[Tashipixie]

Hi. My GP suggested I had gca and sent me to eye clinic who didn't agree. So after 3 weeks of treatment I have finally had biopsy . My worry is as I have been on the steroids for this long the biopsy will come back negative . When I had the biopsy done yesterday the consultant did say that he could see some giant cell lesions , he was pointing them out to a trainee. I never got to talk to anyone before I left the hospital. Does it make it make likely I have gca if he could see lesions? I am quite worried that they are going to stop treatment when they shouldn't .

[Celtic PMRGCAuk volunteer]

Tashpixie, it sounds as though your consultant may well confirm your diagnosis from a positive biopsy if he referred to seeing giant cells during the procedure, although it's true that after a few weeks on steroids the giant cells will often have dispersed.

Even if the giant cells aren't found, it doesn't mean you don't have GCA, and in that case your response to the steroid starting dose will be taken into consideration.

If your symptoms have improved by at least 70% on the steroids - and only you can answer that from your experience thus far - it is most unlikely that the treatment will be stopped, so no need to worry on that score.

[Tashipixie in reply to Celtic]

Thank you . The GP had said to start reducing the meds to see how I got on . The eye clinics main reason for saying it's isn't gca is due to my age . I am 53 . So hopefully they won't just stop the meds . Leaving me worried about what will happen .

[Celtic PMRGCAuk volunteer in reply to Tashipixie]

Oh dear, Tashipixie, the Eye Clinic needs educating - although rare, even quite young people have been known to have GCA, and the teenage neighbour of a friend of mine was diagnosed with GCA affecting just the temporal artery (Temporal Arteritis).

[11caroline29 in reply to Tashipixie]

Hi. Just to let you know I was diagnosed at 49 with GCA and PMR. I also had artery biopsy which was negative but had symptoms and raised esr and crp bloods. I guess the steroids saved my sight so very important to continue with them. Best of luck.

[Maxine-59]

I have GCA , I had head a lot of head pain including temporal pain, headache and pain behind my ear. I also had migraine like sight loss .A very long story with other symptoms besides. I was misdiagnosed several times so listen to your body. I wasn't fully diagnosed by the eye clinic either. Professor Mason on London terms it Large vessel vasculitis. Before fully diagnosed my subclavian, brachial and axillary blood vessels became affected. I was 56yrs at that time. It is a form of GCA

I don't want to alarm you - just listen to your body and keep repeating what you feel like. Also visit the Vasculitis UK website that has lots of info about GCA and Large Vessel Vasculitis 😄

Have you had blood tests etc?

Try not to worry but read all you an to be as informed as possible for all your medical appointments.

Best wishes

Maxine

[Tashipixie in reply to Maxine-59]

Yes had blood tests done which were raised but not loads . As I take methotrexate to suppress my psoartic arthropathy the GP felt that could be masking things .

Best wishes

Karen

[mel-21 in reply to Maxine-59]

Hi Maxine

I am new to this page but happy to find it.

I have a question about this GCA.

I am 37 years old female. I should say that I've suffer from anxiety for years. I think my problem begin with being anxious and up tight all the times. I remember years ago when the pain started it was from my back of left shoulder. There was a painful point there that I had to presure it most of the time hoping to get some relieve. Then the burning, itching and stabing pain begin to travel to the left side of my neck, then to the upper left jaw and teeth, then to the inner left ear then to the left eye and upper left side of my scalp. The pain would get to bad that I had to grab and pull painful area in my scalp to get some relive. Sometime, the pain would get better but other times no matter what I do never got better. Then the pain began traveling to my left arm, left under arm, left breast, left hand and fingers, then it would go down to my left hip and leg and foot. I should say that my Intire left side would get inflame. Many times I completed about the problem to different doctors like , dentist, optometrist, and my primary dr. But none took me siriously beacuse everything was normal therfire, anxiety was blamed. Recently I went to my dr and pushed him to order me a brain MRI to see what's going on.

Finally he did and my result was shocking. But still he says nope the radiologist makes big deal out of it beacuse my CRP and ESR or ESD both were normal. He ordered tests like anti body ANA which was normal. Lupus was normal. Celiac was normal.

Therefore, he told me there is nothing abnormal in your blood tests to make me doubt.

Only my MRI was off and abnormal which he says it can be normal as well.

Here is my MRI result

Findings: Normal Configuration of the intracranial compartment and posterior fossa. There is no hydrocephalus, intracranial mass, hemorrhage, diffusion restriction or significant abnormality demonstrated extracranially. Several nonspecific punctuate FLAIR in distribution. In pationet of this age, these are atypical, and could be inflammatory-infections, demyelinating, chronic migraine, vascular, and not completely excluding Vasculitis. Intracranial dominant flow-voids are identified in usual fashion.

Impression:

Tiny scattered frontoparieatal FLAIR hyperintensities are distributed largely peripheral. In a pationet of this age, with this MRI appearance, it could be due to variety of etiologies. Further work up is therefore recommended clinically. Further work up is therefore recommended clinically. Further radiographic work up may include MRI using Gadavist, cervical MRI if indicate, and follow up MRI for stability advised.

So I went and saw a nerolgyist as well. He checked on my neurological signs and thanks god they were all normal. He told me that he will look at the MRI images and will talk to the neurologist as well. He also said it had to be coronation between the images and body symptomps he will not diagnose anyone only by imeges.

I keep complaining about my left side pains and itchings but none listen to me.

I even went to cardiologist and asked for heart and neck ulthrosound. I don't know if this ulthrosound is the same for the GCA. They checked in my carotid arteries to see if there was any blockages in both side from the front side of my neck and both showed normal. Again I don't know if they do special ulthrosound for the GCA. Or for they do it from the back of the neck or the temples.

I was in the pain right now and I had to pull and hold on the life upper side of my scalp to relive the pain but this time I felt pain and burning sensation traveling to my left temple, left eye and left ear.

I could feel the plus. Honestly, it scares me beacuse Google searching says this is a siriouse disease which should be taking care of right away.

Mine is years now and i am afraid that I might get blind in the left eye or have a stoke.

Sometime the pain leaves me for two to three days but it comes back again specially when I am nervous.

Is this GCA? Or something else? What should I do?

What are your symptomps? Are they like mine?

How were you diagnosed? By MRI, blood works, body symptomps or biopsy.

I need help plz 🙏

Thank you

[Maxine-59 in reply to mel-21]

Oh bless you - I would contact Vasculitus UK - they have a brilliant help line.

I had a headache which in the beginning felt like a tension headache, it then changed and I developed temporal pain and neck pain. I was exhausted, had an increase in cramp in my legs especially the right. I had fleeting losses of vision sort of patchy which lasted for about 10 min to 2 hours. I was also achy. All very vague really. I had one raised ESR and one raised CRP other blood tests since have stayed ok . Also tinnitus slight but only once jaw pain. I did also have dental work done.

The head ache changed. I couldn't do certain tasks such as washing my hair or hanging out washing - I would lift one arm up with the other to peg things in the line. The change happened when I tried to do normal things like taking things out of the washing machine. I would get a shooting pain that came up from the back of my neck to the front - I thought my head would explode - it lasted for several minutes then would move to a frontal headache. At its worse I would feel rather faint . I did go to a and e a few times. I had MRIs, Ct Scans,blood tests all sorts. I also asked for a second Rheunatolgy option . I saw every ologist going from numerous depts. several misdiagnosis of migraine. I knew it wasn't migraine.

Finally an excellent Rhematoligist realised what it was - she could not feel my radial and brachial pulses. I am now described has having large vessel Vasculitis which in my case is more accurate as the GCA isn't just in my head.

I am sooooooooo much better though and back working full time. I also asked to see Professor Mason at Guys who I see twice a year with my local Rhuematologist managing me day to day. It took a long time to get sorted and even now most Drs don't really understand it. My blood pressure remains low in my arms which gives a false impression to professionals.

My MRI only shows slight irregularity of my subclavian blood vessels, they couldn't see the axillary and brachial due to my arms being down, at its wiorse the brachial was 90 % Blocked. .... Diagnosed by ultra sound. The temporal ultrasound showed resolving odeama, like you I had been on steroids for a month by then.

At times my heart would feel as if it was banging so loudly that the world could hear it. I hated laying on my left side.

Anxiety or no anxiety you know when things are not right for you. It sounds as if they are investigating all they can and listening to you. Certainly I had to work hard at keeping calm as my heart symptoms felt worse under pressure, but it is hard .

Hope my story helps a bit - I can't stress enough how much better I am now and living with this condition, so you will get there.

Send me a private message if you need to know more.

Maxine

[Tashipixie in reply to Maxine-59]

Thank you . My vision is worse today so it seems along wait until Thursday for eye clinic and waiting for biopsy results

[Maxine-59 in reply to Tashipixie]

In what way, what are your symptoms.

[Tashipixie in reply to Maxine-59]

Left eye has no clear vision . Very blurry and , grainy darker . Right eye has a small normal clear spot . Double vision . Things don't appear to be straight

[Maxine-59 in reply to Tashipixie]

If you feel it is worse then contact ur GP - you may need an earlier appt at the hospital or go to A and E. There must be a way of getting seen quicker if needs be. You could always see what the Consultants secretary suggests. Where abouts in the country are you?

[PMRpro Ambassador in reply to mel-21]

To mel-21:

I'm sorry - there is no-one on this forum qualified to interpret those results, everyone here is also a patient.

The chances of it being GCA are small - it is mainly found in older patients although it is very occasionally found in people who are younger so I'm not saying it ISN'T GCA, however you will find it difficult to find a rheumatologist who will consider it at your age, especially with normal blood results although about 20% of patients do have no raised blood values. MRI would probably have shown up something if it was affecting your cerebral arteries although PET-MRI would be better.

The ultrasound you had is to see if there is anything blocking the carotid artery - if there is there is a higher risk of stroke - but it is unlikely to show up signs of GCA. The u/s for that is done on the temporal artery or the brachial artery but they are not always affected.

Really the only thing you can hope is you find a doctor who will take the radiologist's report more seriously, I'm sorry not to be of more help. Since you say you have "been to see" various doctors do I assume you are not in the UK?

[Tashipixie in reply to PMRpro]

Hi I take it that is in replies to Maxine's post and not mine

[Maxine-59 in reply to Tashipixie]

It is probably yours Tashipixie - yes we are all patients. I am pretty sorted at the moment.

Although PET scan would have been better for me it wSnt offered.

[Tashipixie in reply to Maxine-59]

I haven't had MRI or pet scan just the biopsy . How I can get some where soon got a appointment to see GP in the morning

[PMRpro Ambassador in reply to Maxine-59]

You're both wrong! Mel-21 actually!

Honestly - this forum drives me up the wall - especially when I forget I need to make it more obvious who I'm replying to!

[Maxine-59 in reply to PMRpro]

Agreed .

[PMRpro Ambassador in reply to Tashipixie]

You're both wrong! Mel-21 actually!

Honestly - this forum drives me up the wall - especially when I forget I need to make it more obvious who I'm replying to!

[Tashipixie in reply to PMRpro]

Sorry I won't bother this group again . I am struggling with this especially the vision and confusion . I didn't no how this group worked I thought that seen it was my thread people where replying to my question . So I will go away thank you for your helpfulness

[PMRpro Ambassador in reply to Tashipixie]

No - that wasn't at all what i said - I meant that the format of this forum makes it next to impossible to know which answer belongs to which question! If someone puts a question in the middle of a thread it has to be answered there - and they reply appears way down the page. I participate in 3 different forums, all different, but this one is a pain in its format and I keep forgetting to make it more apparent who the answer is to. It's me I was annoyed with!

[Maxine-59]

I have MXT too for the large vessel disease. I used to feel faint and collapse at its worse but that is ok now. I manage to work but the fatigue is overwhelming at times . We are complicated beasts sometimes aren't we. My ESR and CRP were raised, but only once apart from the odd occasion when I had an infection.

[oscar212]

They will no with blood esr crp reading when I was first diagnosed it was over 100 steroids brought it down to 49.18 month later my reading is 25 .15 mg steroids it flares up then I need more steroids. Hope this helps you.

[PMRpro Ambassador]

Was he looking under a microscope at frozen sections? Otherwise I doubt he was looking at giant cells - he may have seen a typical appearance of the outside of the artery though. I also doubt that the mtx does much to mask GCA - though it MIGHT keep the ESR/CRP down. However, 1 in 5 patients have normal levels and it doesn't HAVE to be excessively raised in either PMR or GCA - despite some doctor's beliefs!

[Tashipixie in reply to PMRpro]

Not frozen sections . It was the sections he removed he pointed it out to the trainee as the lesion that looked like a bunch of grapes . My crp is usually kept down by the mtx but was at 12 before steroids and game down to 5 after 4 days .

[enen]

I was 51 when I had GCA five years ago. I was diagnosed without biopsy. Some did cast doubt on my diagnosis including my Rheumatologist because of my age and I was a little A typical with my symptoms. But as the risk was so great they treated me and 5 years later I have developed PMR!

[Tashipixie in reply to enen]

I am beginning to think I need to fight to stay on treatment