GCA after PMR

[SID3]

Would it be correct to assume that for the 15-20% of PMR sufferers who go on also to get GCA this mostly happens once they are down at the lower doses, as I was told on the only occasion I have seen a rheumatologist, on original diagnosis? Or is it more random?

[PMRpro Ambassador]

More random because the dose for PMR is nowhere near enough for good-going GCA, Then there is the fact that PMR CAN be a presenting feature of GCA right at the start and I suspect that they are the bulk of the 20%, OTOH, DorsetLady had had PMR symptoms for some considerable time before GCA appeared - suddenly, but in retrospect hardly out of the blue.

[SID3 in reply to PMRpro]

Both good points. Let's hope things are better today than when DL was so unlucky. In my case I am going on holiday soon to Salento and think it might be prudent to take 60mgs or so as a safety net against GCA given I am now down at 3mgs, with a few ups and downs.

[Pixix in reply to SID3]

Can I just ask, please? Do you mean you are going to take 60mg of tablets with you so you have something to take if you develop gca while away? OR that you are increasing your intake to 60mg to be sure you don’t get GCA while away? I’m sorry, brain fog is very bad today!

[PMRpro Ambassador in reply to SID3]

Take it in your luggage I hope - not taking a dose of 60mg!

[SID3 in reply to PMRpro]

Yes, absolutely - the precautionary principle. The dilemma is that if you get what you think is a GCA symptom (and which might not be) and then take 60mg, you make it impossible for the clinic you then go to to know what is really happening - a classic catch-22.

[PMRpro Ambassador in reply to SID3]

Depends how long it takes to get to see someone doesn't it.

[SID3 in reply to PMRpro]

Indeed - worth doing a bit of research in advance. I know the places in Florence and Bologna but not Salento - probably in Lecce.

[PMRpro Ambassador in reply to SID3]

Probably - don't know that corner - Bari hospital is pretty good with the medical school. I have friends there.

reumatologia.it/en/struttur...

[Exflex in reply to SID3]

Hope you don’t think this is being too nosey. Under what circumstances would you consider taking 60mg? I mean what symptoms. Thanks.

[SID3 in reply to Exflex]

Tricky, I agree. Following what advice I got two years go from my diagnosis, and from this site, if I got a bad temporal headache, difficulty chewing, notable scalp pain or of course diminished sight I would consider taking such a dose - but only if I could not get to a decent A&E within 12 hours. Others here can judge better than me if this would be sensible.

[PMRpro Ambassador in reply to SID3]

Think I might start with 30mg first - you can always take more,

[DorsetLady PMRGCAuk volunteer]

Further to PMRpro comments, I did have some PMR type symptoms initially - biceps/shoulders only - but was dismissed as bloods consider satisfactory...... [in retrospect know they weren't].

However bicep pains did go after a few weeks - although left with the typically stiff shoulders [left always worse] and never got hip/knee pains... but did get the fatigue after 6 months or so..

Because one shoulder was worse it was treated as a frozen shoulder - often confused with GCA [something else learnt later] - and any other symptom in head/neck area was then related to that! Fatigue was assumed to be age and caring for late hubby...

When I did eventually see Rheumy 2 years after first symptoms and 7 months into GCA treatment, I did ask if I had PMR initially... his comment "you might have, but it would be gone by now"...

just about sums up his knowledge.. needless to say, didn't bother going back to him...

[SheffieldJane]

I think that my extra cranial GCA was probably developing alongside my PMR. It was only when I couldn’t get below 3 mgs Pred that I had a specialist ultrasound scan that found the abnormal cells in my left armpit. My main symptom was feeling flu-like and exhausted. I was immediately put on 40 mgs and was very fortunate that it was not in my opthalmic artery.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

…was very fortunate that it was not in my temple arteries.

If you are thinking about sight loss, it not the temporal artery you need to be worried about - it’s the ophthalmic artery… that’s the one that feed the optic nerve .

Arteries

[SheffieldJane in reply to DorsetLady]

Thank you DL, yes I was thinking that it was the artery in my head that I had to worry about. I have amended it so that I don’t spread my confusion. Of course that is the one my optician monitors. Much clearer at last. X

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Think you probably need to be dead for anyone to biopsy the ophthalmic artery! 🤣😂

[SheffieldJane in reply to DorsetLady]

No he has my whole 3 D eyeball on his screen from all angles. 🤓 He monitors any changes and knows about GCA.

[PMRpro Ambassador in reply to SheffieldJane]

It isn't the eyeball that is the problem - it is the occipital area in the brain where the sight centre resides ...

[SheffieldJane in reply to PMRpro]

So I do have to be dead?

[PMRpro Ambassador in reply to SheffieldJane]

What for? I doubt they would biopsy the arteries there unless you were ...

[SheffieldJane in reply to PMRpro]

I am more confused than ever. I thought the temple artery biopsy was the diagnostic tool to diagnose Cranial GCA. Then DL said it was the opthalmic artery that was the danger for sight loss. What is my Optician studiously looking for every few months?

[PMRpro Ambassador in reply to SheffieldJane]

It is - but only because it is superficial so easy to get at and it is not essential. It may not be involved - which is why many TABs are negative and why the TAB being negative doesn't mean you don't have GCA, it just means that they didn't find the giant cells they look for. In terms of visual loss, the temporal artery isn't the artery that is important, it is blood flow in the ophthalmic artery that matters as that supplies the optic nerve and if the blood supply to that is blocked or reduced the optic nerve is damaged. If it is damaged enough, the nerve dies and no long takes signals between the retina and the brain.

I have no idea what the optician is looking for unless it is signs of AAION, the most common cause is GCA and if the poor blood flow is there over a longer period it results in the optic nerve becoming swollen and pale where it joins the retina plus other specific signs.

eyewiki.aao.org/Arteritic_A...

[SheffieldJane in reply to PMRpro]

Thank you for the clarification. X

[fmkkm in reply to DorsetLady]

Dear DL, Thank you for posting this picture, I have saved it to my phone photos. Now when my physicians assistant asks me what happens when I have a flare I can pull this up and have some “show and tell”.

Sinus throbbing here. Forehead sore here, ache at the base of my skull here. And of course as you all say, “feeling rubbish “!!

[Gossiplady in reply to DorsetLady]

This is brilliant! I too have taken pic on my phone, just in case!

[ncfaaeos]

In my case, I was diagnosed with GCA 14 months after I had stopped taking Prednisolone for PMR.