Gca

[Xanthe12345]

Just wondering does anyone know why some people get pmr and others get gca or both. Does the gca come on later as we reduce the steroids? 🙂

[DorsetLady PMRGCAuk volunteer]

Hi Xanthe12345,

I don’t think there is a definitive answer, other than they both are auto immune disorders and therefore similar.

In PMR the most widely affected vessels are those in your main muscle groups - shoulders, neck, hips, pelvic girdle - sometimes knees.

With GCA it also affects the shoulders plus the larger carotid artery that feeds your neck & head, and the aorta. If only affecting your head, it's sometimes referred to as Temporal Arteritis (TA).

GCA does not “come on” as you reduce steroids - in fact you are less likely to progress from PMR to GCA than the other way around.

About 1 in 20 people on treatment for PMR (or 7 out of 20 people with untreated PMR) develop GCA; whereas up to 50% of people with GCA also develop PMR.

I had GCA only, fortunately I didn’t have PMR as well.

[Xanthe12345 in reply to DorsetLady]

Thanks for the information Dorsetlady...was sorted of worried that as I will be reducing to 7.5 next week that gca might appear. So many silly things to worry about. Thanks again for easing my worries👏🏻

[DorsetLady PMRGCAuk volunteer in reply to Xanthe12345]

GCA is not a silly thing to worry about, but if you had it you would know by now. It’s most people bete noire, but the most dangerous time is pre diagnosis/pre Pred.

Please not worry, but you might find your reductions are a bit difficult for a while whilst your adrenal glands start to awaken.

[Xanthe12345 in reply to DorsetLady]

Thanks so much for your encouragement...I suppose taking Mirtzapine and now D3 adds more stress to reducing my steroids. Panic attacks and depression hit me hard when I reduced to 6mgs in Feb. I know it was nothing to do with reducing steroids but once it gets in your brain

It unnerves you a bit. How are you keepin now?

[DorsetLady PMRGCAuk volunteer in reply to Xanthe12345]

Hi,

Good GCA wise - in remission and off Pred since Sept 2016.

Waiting for knee replacement!

[Xanthe12345 in reply to DorsetLady]

Well done! Oh for the day of no pred! Hope you dont have to wait toooo long for knee replacement xx

[DorsetLady PMRGCAuk volunteer in reply to Xanthe12345]

See answer to Colin below!

[piglette in reply to Xanthe12345]

Hi Xanthe, vitamin D3 usually does not normally cause problems and is just another tablet unlike Mirtzapine which does have side effects.

[Xanthe12345 in reply to piglette]

Just so exhausted all day! I was told the tiredness would wear off after a few weeks. Not sure if it is perhaps more a poly flare. Still grateful for feeling better and not in pain like a lot on this wonderful site

[PMRpro Ambassador in reply to Xanthe12345]

Did it start as you went down to 7.5mg? This is probably your adrenal glands not having kept up with the reduction and they aren't producing enough cortisol to top up the pred dose. It should wear off after some time - but how long it takes depends on you, everyone is different.

[Xanthe12345 in reply to PMRpro]

You could be right...I willl persevere at the pred level perhaps

[Lanakay in reply to Xanthe12345]

Sorry to hear about your panic attacks and depression. I had the same problem and am taking a low dose of mirtazapine. As soon as I started taking it I was able to sleep through the night. I was also prescribed lorazepam. I try not to take the lorazepam unless the anxiety gets bad. Unfortunately weight gain is a side affect of mirtazapam. Between the prednisone and mirtazapam I have gained plenty weight.

[Xanthe12345 in reply to Lanakay]

Mirtzapine really works but so tired all day! How do you cope with the tiredness Lanakay...or does it eventually go away

[Lanakay in reply to Xanthe12345]

I really haven’t noticed being tired during the day. It sure let me sleep at night though and that was a blessing. I would go to sleep at night ok and then wake up several times feeling very panicky.

[Xanthe12345 in reply to Lanakay]

I am beginning to think that I might have to up preds...extreme tiredness could be poly flaring x

[GCA1947 in reply to DorsetLady]

Hi Sue

Snap!!

Colin

[DorsetLady PMRGCAuk volunteer in reply to GCA1947]

Hi Colin,

I was supposed to have my assessment appointment on Tuesday 15th, but it got cancelled last minute...rearranged for 30 May! So that’s at least another 2weeks delay.

Getting a bit fed up now! Plus of course everything’s getting more painful! Good job we’re a resilient lot!

[piglette in reply to DorsetLady]

Hi Dorset Lady, I really feel for you having gone through the same wait with my hip. I was worried silly on the day of the op they would cancel.

[GCA1947 in reply to DorsetLady]

Dear Sue,

I was told this morning that the Endoscopy examination that I'm having to try to find what is causing the raised LFT's since July 2017, yes really ten months is programmed for 18th June in another month's time. Because Janet died of an auto immune Liver condition hepatitis I've been twitchy in case some how something like that is going to get me as well. It won't be Hepatitis because that's a long-term condition and the only long-term condition I've got is Klinefelters Syndrome, and that's been screwing up my life since before I was born. I haven't really minded being different to other men but so much of me works differently. Take sedatives which don't work quickly. My G.C.A. biopsy local anaesthetic worked as Janet & I were going home in the taxi afterwards one hour later; local's in the dentist always kick in after the extractions partway completed. I can't show you what I look like, Janet took some photographs of me some years before she passed away and I look far worse now because of the weight gain in 2016.

I'm sorry your assessment has been re-scheduled Doctor's who haven't our conditions don't understand the effect that delays cause when we have to make special arrangement just to attend.

Without any relatives or children I'm taking the Landscape Contractor whose been revamping my garden to make it easier for me to get about as a 'friend' to the hospital and he will have to stay with me for four hours afterwards to make sure there are no complications. My curved Oesophagus won't help, reason for not having Alendronic Acid as I couldn't stand upright. Guess what I'm having a Flare. I reduced my Paracetamol (taken for 26 months at 8 capsules a day) to 4 capsules 1 a day to find that it had been masking a second flare aches over left eye, in eye socket, sinuses under eye and left upper jaw and like a fool I asked the surgery to remove the Paracetamol from my medication list. I'll ask them to add it back but it means another visit to the Surgery. I'll stop there as the garden beckons,

lovely to speak to you

love

Colin

[DorsetLady PMRGCAuk volunteer in reply to GCA1947]

oh dear Colin,

As if one complaint wasn't enough, somebody somewhere thinks we can multi-cope as well as multi-task!

Take care!

[Telian in reply to DorsetLady]

That's interesting how it's risen in four years - it was only 25% with GCA go on to get PMR and 17% the other way round when I was diagnosed - suppose more are being diagnosed though as the illness gets more recognised?

[DorsetLady PMRGCAuk volunteer in reply to Telian]

Maybe!

Those figures are from PMRGCA web site.

[Telian in reply to DorsetLady]

I meant the statistics I was given at diagnosis, if correct, show how quickly the illness looks to be rising, I trust the web site to be accurate.

[PMRpro Ambassador]

No, PMR and GCA are really the same illness but different levels and symptoms. More likely is that, if you start with GCA PMR may appear as you get to lower doses - but many people have "just" PMR or "just" GCA. And others have overlaps.