Gearoid

[Rivocco]

Have been told since January i might have GCA. Have been on Pred from 40ml now down to 10ml. I have had numerous tests all coming back negative. To date i have not been confirmed to having GCA. Has this happened to anyone else? Cant help thinking should i still be on steroids which are giving me bad side effects. My last appointment with the doctor was at the beginning of April he said he would see me in three months time.. Confused.

[DorsetLady PMRGCAuk volunteer]

Don't think we can advise you on this - you need medical input.

What tests did you have, and what symptoms initially to make doctors think GCA a possibily?

What side effects from Pred are troubling you?

[piglette]

Have you had a PET Scan? I assume your doctor is telling you to reduce the steroids, what are they saying? Are the steroids helping your symptoms?

[PMRpro Ambassador]

What made them suspect you could have GCA? What tests have they done? Have you still got the same symptoms that made them suspect it in the first place? Did the 40mg prd sort them all out?

Other than a temporal artery biopsy that is positive (and they aren't always by any means) or temporal artery ultrasound there is no test that will 100% rule GCA in or out. It is a clinical diagnosis and that means made on the basis of signs and symptoms.

All you can hold on to is that there is no side effect of pred that is as bad as the ultimate effect of untreated GCA which is potentially total and irreversible loss of vision.

Most of the adverse effects of pred can be managed, mitigated and in some cases avoided when you know how - what are you finding so bad about it?

Please could you put a more relevant title to your post? The idea is to attract readers who know something that might be helpful!

[JeremyNZ in reply to PMRpro]

Hi. I had the same worry for weeks. Then a specialist did a temporal artery ultrasound and showed me I was okay. They can see each artery and the wall thickness etc. I still have headaches... but apparently not GCA. Maybe from having been on moderate doses of prednisone for so long. I'll now aim to taper from 15mg to as low as I can go. I'd be happy with 10mg in the medium term.

[PMRpro Ambassador in reply to JeremyNZ]

I fear even that only works if the temporal artery is involved and it isn't always . Did they look at the subclavian and brachial arteries too? That may improve the reliability. But you can have LVV (large vessel vasculitis) that affects blood flow to the head and neck that never reaches the temporal artery. In terms of visual loss, it is the blood flow to the optic nerve in the occipital region, the opthalmic artery, that is crucial and it may never go near the temporal artery branch that supplies the scalp.

DL has a lovely image showing the blood supply to the head ...

[DorsetLady PMRGCAuk volunteer in reply to JeremyNZ]

As PMRpro comments -got a few -

Head arteries 1

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

And another…

Arteries 2

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

And another -

Arteries 3

[SnazzyD]

For many GCA is never confirmed because tests come back normal. This can be the way the person is, the test is not specific to GCA, the GCA is not where they can see easily or the Pred has dampened things down too much. Meanwhile one is on high doses of Pred feeling like goodness knows what wondering, “is this worth it?”. That was me - Biopsy and PET scan negative (location and Pred ) and ESR/CRP normal (me). Pred really did help and it wasn’t until I had a hiccup with dosing and all the symptoms came back, I realised Pred was very necessary. My diagnosis was based on symptoms and good response to 60mg Pred.

Side effects can be a complete shocker and mostly normal and I think it is not helped by the lack of information about what it is really like and no info at all about what to do about them. Thanks to this site I knew to go super low carb diet to avoid weight gain and chaotic blood sugars, for example. Having had chemo in the past, I am interested how on being told they have cancer people will tolerate totally awful side effects because of fear of cancer and death. Along comes GCA, an unknown invisible thing, no support no information (unlike cancer) and no fear of death. It doesn’t feel worth it. If you are sold the line that Pred gets you back to normal and the autoimmune thingy whatever it is will be fine it’s a shock to find that it isn’t as simple as that. Feeling weird and out of control of things on Pred can make one feel there has to be a bad reaction going on and it certainly doesn’t feel like a bargain!

Perhaps we can help with the side effect part but it is difficult to comment on the diagnosis without knowing how they came to it.

[Rivocco in reply to SnazzyD]

Thanks all for your replies. When I went to get the biopsy the doctor was unable to do it as he couldn’t find the temporal arteries, few weeks later Got an ultrasound. The letter I received from the hospital stated on the left side of the temple artery it appeared normal however on the right side there were equivocal Ultrasound characteristics which may suggest and are unable to exclude the presence of GCA. The CT scan of the brain did not demonstrate any significant abnormality.. I have been told I can now travel abroad. My quandary is do I tell my travel insurance I have GCA when it has never been totally confirmed? My side effects with the Pred are - Tremors, terrible sweats, tinnitus and blurry eyesight. I will continue Taking the Pred until i see the Doctor perhaps in June albeit I haven’t received an appointment as yet. It has been hearting to hear the GCA cannot always be confirmed. Thank you all again.

[DorsetLady PMRGCAuk volunteer in reply to Rivocco]

Not sure you can categorically say you don’t have GCA … so yes you do have to inform the insurance company… but for many it’s not an issue.

And as SnazzyD says you cannot just stop steroids, and having been on high dose for a few months you do need to taper off carefully..

[SnazzyD]

The ultrasound if done a few weeks after starting Pred, will be less reliable. They have seen enough to be unable to confidently rule out GCA, so there is that if one is trying grasp at anything. The CT may well show nothing too but they do need to rule out other things. Sadly with GCA it isn’t a good idea to hang about withholding Pred until tests are completed because of the risk of blindness.

Is 10mg still keeping your GCA symptoms at bay? Sweats can also be caused by autoimmune activity. Things will lessen as the dose reduces but don’t be tempted to go down too fast only to end up back up on higher doses because of a flare. The Pred is only keeping the inflammation from doing harm, not stopping the immune system going haywire.

Regards the travel insurance, be careful with the small print. Every insurance I’ve had the underwriter likes to know if you have had any hospital visits in the meantime, even if you have an active policy. If you withhold information it may invalidate any health claim you make even if it is irrelevant. Also, the fact that they couldn’t rule out GCA and that GCA is a tricky customer to diagnose, that may not take away the GCA label. When I was on 18mg with GCA it made no difference to my policy. If you are on high doses of Pred, it might make a difference.

Whatever you do don’t stop Pred suddenly, it could be serious as you have a high risk of adrenal crisis having been on steroids this long. This is why long term steroid takers have a slow reduction at the end.