Rheumatologist thinks I may have GCA

[Amkoffee]

I saw my Rheumatologist today for my regular 3 month checkup. When she asked how my general health is I told her that my TMJ had been acting up and I've been having headaches. It never even dawned on me that those are also symptoms of GCA. But she jumped on that and we discussed testing for it. She ruled out sonogram or whatever they call them now a days. And I didn't particularity want the biopsy so she is going to get me scheduled for an MRA. I've never heard of an MRA before but explained it to me, sort of. So my question is about that type of test. Anyone have experience with it? My inflammation markers are sooo very high all the time and I had to stop taking prednisone because I developed osteoporosis. But in April I was diagnosed with Adrenal insufficiency and put back on steroids. But only 25mg of hydrocortisone which is equivalent to 5 mg of prednisone. All that being said I still have PMR going on 6 years.

[SheffieldJane]

I can see why your Rheumatologist thinks that you may have developed GCA. Although your treatment so far would have made me feel pretty unwell. My GCA was diagnosed by an ultrasound scan of my head and neck, done by a specially trained technician. Has your Rheumatologist ruled that out? It is increasingly becoming the preferred method. I had a head MRI prior to this and the abnormal arteries did not show up. Do you have all the symptoms of GCA? Unusual headache, jaw claudication, eye symptoms. I would be keen to be treated with high dose Prednisalone because of the danger to my eyesight, immediately really. This is probably what they would do in A&E. In fact, this is where I would probably go in your situation. Let us know what happens.My MRI involved my body being put in a tube, open both top and bottom and keeping perfectly still while my head was scanned within a sort of doughnut. I also had a whole body one. Nothing was found. I was diagnosed with PMR in February 2016. GCA/LVV last year. The ultrasound scan involved a wand travelling around my head, neck and armpits ( where the halo effect was spotted).

[Amkoffee in reply to SheffieldJane]

I'm in Kansas USA and my rheumy told me that the ultra sound method is new here and no one has much experience in doing it. Including the tech that does the scan and the radiologist that reads it. As far as my health goes I have a terrible spine, lower back and neck. I am in constant pain so I don't always feel things the way other feel them. Therefore I tend to ignore other pain. And with these symptoms I've been having I just excused it away a TMJ and stressful headaches. How would you describe your vision? My dr told me it's typically double vision but mine is more blurry.

[SheffieldJane in reply to Amkoffee]

My vision can be blurry but I don’t have Temperal Arteritis my GCA is in the peripheral arteries. People sometimes lose the sight in one eye temporarily this is a big red flag. Other people are not so lucky and just lose their sight permanently without warning. This is why your symptoms need to be treated as a medical emergency. Honestly, I would go to ER with your medical history as they will have everything you need to be treated on the spot.I hear you about experiencing symptoms differently because you are in constant pain. I also know that here in the U.K. appropriately trained technicians are rare. If your Rheumatologist believes that you may have GCA they need to treat this with the appropriate sense of urgency. I remember you from over the years and feel worried about you.

[Frewen1 in reply to Amkoffee]

Hi there, just to join in, my GCA was only discovered (14 months ago ) after a PET scan - in the week prior to that, I'd had every possible other scan, and a week's intravenous antibiotics. PET scan was the only thing that showed up temporal and aortic inflammation

[Nextoneplease]

Hi Amkoffee 😊

I absolutely agree with Sheffield Jane. Unless your MRI scan is imminent, I honestly wouldn’t be waiting around for it, I’d be up at A & E asking for an assessment for GCA. Hopefully all okay, but better to be safe than sorry 😊

Incidentally I have also had a head MRI and an ultrasound for GCA and they were just as SheffieldJane has described.

All the best to you, keep in touch x

[Amkoffee in reply to Nextoneplease]

I would imagine my MRI will be scheduled with in the next few days. But I'll take myself to the ED if anything gets worse. I was actually at the ED last Thursday because of a bad headache and vomiting and diarrhea and I thought I might be in an adrenal crisis and it wasn't.

[Nextoneplease]

Hi again 😊

I know what you mean about ignoring pain…..or perhaps confusing one type of pain with another. For example I’ve always had migraines so put temple and scalp pain down to that….

I believe that double vision is a frequent symptom of GCA, but in my case my vision was very blurred. I couldn’t see to read without constantly re-focussing, couldn’t see road signs, nearly stepped in front of a moving vehicle, couldn’t properly look at pictures when I went to a gallery 😟 Really didn’t want to acknowledge I had a problem, but I’m glad I did, so far the treatment has helped my sight 🤞

One thing I don’t understand is why your doctor hasn’t increased your prednisolone? Even though you have osteoporosis and other problems?

Take care and all the best xx

[HeronNS]

You're in the US? Can you get tocilizumab (Actemra) for your PMR and probably GCA? I do know that prednisone is still used in the early stages of GCA especially when vision is involved as they do not trust TCZ to be the sight-saver that pred can be at a correct and timely dose. But eventually the pred is reduced much more quickly when a patient is on TCZ. I would not waste time before getting treated if GCA is suspected.

[Amkoffee in reply to HeronNS]

She did mention prescribing that. I took it for a while after I had to quit the pred but I did not get any relief from it. So I think it may only work for me if I'm on pred and Actemra at the same time.

[SheffieldJane in reply to Amkoffee]

I am on Actemra. I was on 40 mgs of Pred briefly upon diagnosis, to start the process off and was quickly able, with the help of Actemra, to get down to 10 mgs. I am now doing 7 mgs/8 mgs alternate days because I am on gastric coated Pred and we cannot cut those. I know that I have to do the last bit of the taper gently for my Adrenal glands. Initially it didn’t feel as if Actemra was doing as much as Pred used to. A recent break for antibiotics and infection, then re-starting It, stopped signs I was getting of a potential flare with a single injection. So I feel more assured that it does work.That spell in ED could have been related. I got sickness ( vomiting) and diahorrea at the onset of both PMR and GCA. Please act!

[Judyliz in reply to SheffieldJane]

Hi SJ, This is a complete aside so please forgive me and I am sure you know this. If you have 5, 2 1/2, and 1 mg enteric coated prednisolone you can get down to 1 1/2 mgs without having to use uncoated pred.

I am not suggesting it is a better option than alternate days just gives you another option.

Kind regards

Judy

[SheffieldJane in reply to Judyliz]

My Endo was keen on the alternate day thing to stimulate my adrenal glands. Thanks for the mathematical way 😉. I will revert if it doesn’t work.

[Nextoneplease in reply to Judyliz]

Thanks for this 😊I sat down and worked out how to get from 15 to 1.5 without splitting tablets - can’t believe I hadn’t worked it out before! So much easier….thank you x

[Sharitone in reply to SheffieldJane]

That's very encouraging! Thanks!

[HeronNS]

Yes, I think I've only heard of people starting it while on pred, but others will know more about it. I do know they are nearly always able to taper pred more quickly although not everyone is able to stop pred completely. Best wishes and a hug.

[Amkoffee in reply to HeronNS]

Because my body can't make its own cortisol (adrenal insufficiency) I will be on a low dose for the rest of my life. I take 25mg of hydrocortisone a day. But this dose isn't anywhere near enough to treat GCA.

[DorsetLady PMRGCAuk volunteer]

Will just jump in and repeat what others have said, if your Rheumy thinks it’s GCA, then she should be treating you as such and prescribing an appropriate amount of medication.

As for vision, it can be a variety of issues, not just double vision…mine was blurriness in one eye only……and I lost the sight within 4 days…

I also had other symptoms you describe….

Please attend ED as a matter of urgency, a good Ophthamologist should be able to diagnose.

[sew-lady]

I have GCA that was confirmed with the temporal artery biopsy. I was put on 60 mg of prednisone as soon as symptoms showed up to prevent blindness. That was 7 years ago. I have tapered down slowly as my inflammation decreased but have had some flairs. I did have to add methotrexate to help the prednisone and it has helped. I work closely with a great rheumatologist. She has worked on the osteoporosis too. Work on getting this in remission. I will pray for you. I hope this helps. 😘

[Luciejc]

I too live in the USA, My rheumatologist, suspecting GCA ordered an immediate biopsy and prescribed 50 mg of prednisone to be taken right in the dr's office after the biopsy. It was positive. After 2 years I am down to 2 mg prednisone and weekly Actemra injections. Symptoms were headache, jaw and neck pain, and blurry vision. Waste no time in getting yourself tested. Good luck.

[Nextoneplease]

How are you doing today Amkoffee? x

[Amkoffee]

UPDATE: I called and talked to my rheumy's nurse. She told me that the doctor is not worried about getting tested ASAP. She did tell me to go to the ED if I develop a severe headache. I've only had mild to moderate headaches at this point. And last Tuesday I had a migraine which I haven't had for quite a while. I also could not get an MRI scheduled for 2 weeks. I even called around and that's the soonest I could find. I have also scheduled an eye appointment and that will be done next Tuesday. My rheumatologist has been an awesome lady over the five or six years I've been with her. She's diagnosed me with a couple of other illnesses that nobody else caught. For this reason whike it's frustrating and scary to think I could lose my sight I am trusting her. But I will be monitoring myself more closely than I have been. And I will go to the ED if I get any worse. Thank you to all of you for your support. I have to admit my anxiety level has been pretty high over this.

[Nextoneplease]

Hi Amkoffee 😊

Not surprised your anxiety level has been high - I think the possibility of GCA is one of the things that worries a lot of us the most😟 x

Glad you’ve got an MRI scheduled, even if it is a couple of weeks away - and the eye appointment is good too. I was very reassured by seeing an optician /optometrist who checked my eyes recently.

Do monitor yourself carefully, try to relax (🤷‍♀️), go to the ED if needed and thank you so much for the update.

Wishing you well xx