Questions about GCA

[ShannonT]

I was diagnosed with PMR about 5 weeks ago. I had a remarkable response to 15 mg prednisone. I did start about a week ago with 5 mg at 2 am and 10 mg at 8 am and this helped my morning pain and stiffness.

I am to be travelling Friday from Canada to Dublin with siblings.

I have been having some headaches esp temporal and it can be either side. I also have had ( about 2 year duration) tongue pain when chewing. Only about 2 times a day and resolves. It occurred to me if this could be CGA. I can call my doc in about 12 hours for assessment. How necessary is it to go to ER at this time. I am having such a hard time with my blood pressure on 15 mg of Pred. I am getting anxious that my trip will need to be cancelled and saying that I do not want to be in another country and risk losing my vision.

My husband is away in USA skiing with the family and I feel like I need opinions. I am a primary care nurse practitioner.

Thanks in advance

Shannon

[Rimmy]

Hi Shannon you must be getting a bit worried with that trip looming BUT I have to say - and I am not as medically informed as many very insightful and 'expert' people on this forum - that you must put your health first. As you say you would not want the worst to happen during your trip. it would be best to get everything checked asap - and so perhaps going to an ER would expedite all this. PMR can also be 'symptomatic' of GCA - but you say you've been having possible symptoms for 2 years - so i assume the headaches are a newer advent. Anyway if i were you it would be my mission to resolve where you are 'at' asap as your eyesight could be at risk and travelling with that thought might not be 'fun' anyway.

Best wishes

[DorsetLady PMRGCAuk volunteer]

Hi Shannon,

As Rimmy says please get this checked before you go anywhere.

If it turns out to something other than GCA then at least you will be able to relax and enjoy your trip. If you don’t get it checked then you are going to spend the whole time on tender-hooks and you won’t enjoy yourself.

It may be associated with PMR as already said, and certainly stress with upcoming trip, but best to make sure.

Good luck, and please let us know outcome.

[ShannonT in reply to DorsetLady]

Thanks, has anyone travelled on high dose pred early and done ok. I don’t know how I would respond to 50 mg. I am aware of side effects but not sure if it is safe. How are those Southern Irish hospitals , I do have private insurance.

[PMRpro Ambassador in reply to ShannonT]

Dublin does have an excellent private clinic with a single rheumatologist who seems to be very good at PMR?GCA from what I have been told.

OTOH, I do have to say that I think most rheumatologists would be pretty reticent about allowing patients to undertake longhaul travel across time zones when on high dose pred. There are too many unknowns. One of the problems in GCA is reduced oxygen supply, particularly to the optic nerve. Low oxygen levels in a plane cabin wouldn't help I would have thought.

Do discuss it with a specialist - and above all, clear it with your insurance if you do go.

[DorsetLady PMRGCAuk volunteer in reply to ShannonT]

Hi,

I think the general consensus of opinion is not to travel with GCA within the first six months of diagnosis/treatment. Whether that is because of the high doses of Pred or the GCA itself I’m not 100% sure, probably the latter. I flew long haul -UK to NZ during my GCA journey but that was 3years in and on 7mg.

I don’t think I could have done in the early days, nor in your situation where it’s not being treated as such. But as others have said take advice.

I understand you want to go on this trip, but you can go another time - if your sight is irreparably lost, you can’t replace that!

[PMRpro Ambassador in reply to ShannonT]

I also forgot before: one lady was diagnosed with GCA just before heading to Spain for a month. It is near enough the same time zone and a 2 hour flight from the UK. She was given reluctant permission and hoped the rest would do her good. In the event she spent the entire time in her hotel room - compounded by a fall because of dizziness due to the GCA and pred.

It doesn't always matter how good the medical services are at your destination (Spain and Ireland are both excellent) but the stress of travel and different conditions must also be borne in mind.

[ShannonT in reply to PMRpro]

Thank you for your honesty. I will check back in later after MD appt.

[SheffieldJane]

I agree with the advice that you have already received and to speed this up A and E will fast track you. These things often seem to happen when something stressful is looming, in my experience. It’s the specific nature of your GCA symptoms that is most worrying. I am surprised that this wasn’t considered as your initial diagnosis, given the 2 year duration of these symptoms. Your blood pressure needs to be brought under control too.

Has GCA been dismissed previously? On what grounds?

Your health must come first.

Has there been an increase in the severity of the jaw and tongue symptoms.

I always think I will be too ill to do something that I perceive as tough, but my diagnosis is PMR and my symptoms are typical PMR symptoms.

GCA is potentially every bit as serious as an impending heart attack and you would not do a long journey then. I wonder if the split dose is making you more vulnerable too?

I feel really sorry for you, I can empathise totally. I have always ended up fine in the end. Be safe, be sure.

[justcallmenurse]

Sound advice from the others. Be safe. Get checked out first

[Sandy1947]

Please get to a Rheumatlogist ASAP. Make sure you’re on the right dose. I split Pred 2/3 at 5:00 am and 1/3 at 6 pm. Presently reducing to 10. I use Lady Dorset’s method starting at week 3.

Report back to us with action plan. I hope you’re well enough to go on the trip. Family heals!

[ShannonT in reply to Sandy1947]

Unfortunately rheumatologists are very difficult to get to 6 month wait. Waiting to see my doc when it opens

[Sandy1947 in reply to ShannonT]

Let us know what happens. 6 month wait for Rheumatlogist is outrageous. Are you in a third world country?

[PMRpro Ambassador in reply to Sandy1947]

I know people on the forums in the UK and the USA who have had to wait up to 6 months to see a rheumy. It all depends where you live.

[Sandy1947 in reply to PMRpro]

Lucky those people and all of us have the forum

[PMRpro Ambassador]

The tongue pain can be sign of GCA - it will tend to happen only when chewing and stop when you stop. only to return when you chew again so yes, it will appear to be intermittent and resolve.

I have to say - I'm less optimistic that A&E/the ER would fast-track you and actually there is little they could see unless you are already suffering from chronic AION. Canada doesn't seem to have a good rheumatology service in many areas.

[ShannonT]

This tongue pain only happens briefly about 1-2 times in 24 hours.