GCA eliminated

[ipsydipsy]

Has anyone out there experienced having GCA and then it being "cured" for want of a better word. I have had GCA for 2 1/2 years and am taking 5mg of pred. I do not have any of the original symptoms of GCA - is there a test to see if it is still present? Thanks in advance for your help.

[polkadotcom]

No, in much the same way as it is difficult to 'prove' that you have it, it isn't possible to say that it has gone. It never is 'cured' it 'goes into remission' instead.

PMR isn't an illness as such, it's a collection of symptoms which are given the PMR title for want of anything else to call it. In the early days the symptoms are the same as for RA, Lupus, PsA and several others. The are also other nastier conditions which present in the same way and while it is easier to rule these out, there really isn't a test to prove that PMR has stayed.

It's perfectly possible that you have reached the end of the tunnel - many people do experience straightforward roads to remission. They're the ones who don't post here because they don't need to! Theirs is a dead straight road with no problems.

If you feel the time is right then you can continue to decrease the dose of Pred. All I would say is that it is best to reduce slowly, slowly, than take the risk of stirring things up again.

[ipsydipsy in reply to polkadotcom]

Thanks Polkadotcom

[GreyOwl in reply to polkadotcom]

The question was about GCA actually, not PMR.

Not sure why you say PMR is not an illness. Definition of the word illness being "a disorder or abnormality" and PMR being an inflammatory condition I would have thought there was no dispute that PMR was an illness. I think you are getting confused with the literal meaning of the name, Polymyalgia Rheumatica.

[polkadotcom in reply to GreyOwl]

No, I'm not getting confused, and please note that I said "as such". It's a personal definition as I have never thought of it as an illness or a disease per se, I have always called it a condition as I feel that conveys more of it's chronic nature.

[Celtic PMRGCAuk volunteer]

ipsydipsy, yes I have experienced GCA and it has been in remission for over 3 years (note I am not saying "cured" - sadly there is no such thing at the moment). I was on steroids for 5-6 years and although most of my GCA symptoms disappeared as if by magic within hours of my first 40mg dose, I also had PMR which proved a more difficult nut to crack in my case with several flares at the lower doses. It's good news that you are symptom-free but as polkadot has said do continue to reduce "slowly, slowly" - the lower you get on the steroids, the higher the percentage drop each time for your body to cope with.

[ipsydipsy in reply to Celtic]

Thanks for your reply Celtic, I will take note.

[DorsetLady PMRGCAuk volunteer]

Hi ipsydiosy,

Been diagnosed with GCA for almost 4 years, although think I had it &PMR, maybe just GCA? for at least 18 months prior to that.

Have never had a flare as such, although raised blood markers through a very stressful time, and think/hope my GCA is in remission. I do get slightly fatigued sometimes, but have put that down to adrenal gland not firing properly as its short term, i.e. five minutes or so, and also after specific activities.

Since I got to 7mg I've been following a really slow reduction plan, and only 0.5mg a time. And not continuing if I haven't felt 100% confident to do so. Am now reducing 2mg to 1.5mg, seemingly ok.

As others have said, there is no cure, but most agree is does go into remission after a certain time. Trouble is, there is no definite timescale for that to happen, which is why us 'old hands' are always saying - slowly does it. That way, you can more easily pick up any changes before they become problems.

Good luck with your continued reductions.

[ipsydipsy in reply to DorsetLady]

Thanks

[PMRpro Ambassador]

That would be a holy grail - an easy test to diagnose it and to say it has gone.

As the others have said - the only way to know is by VERY slowly reducing and seeing if you can manage without pred without symptoms returning.

But the dose of pred you are at, you now need to reduce in very small steps to be sure your adrenal glands are back in working order. There are several people who are no longer on the forums who had GCA and who were off pred in a couple of years or so. And it is often easier with GCA than with "just" PMR.

[raymck]

This GCA victim went through the pred cycle once, i.e. down slowly to zero in around a year. Still have the aches and pains but at least I can still drive with my remaining good eye. Like they say, no rush, but I wanted my permission to drive after two peripheral vision tests at an optician appointed by DVLA. Good luck on reaching Club Zero as we call it!

[DorsetLady PMRGCAuk volunteer in reply to raymck]

My that was quick. Mind you as a fellow GCA survivor (less right eye) I think it goes into remission quicker than PMR.

From reading posts on here, it seems that PMR is a slower burning problem, whereas GCA is a much shorter, but more dramatic illness.

I may be tempting fate here, but I don't think I've "had" GCA for some considerable time, although I have been very aware of reducing the Pred slowly to ensure I don't have problems.

Be interesting to see what other GCA survivors think.

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

DL, I do so agree - although Ray does appear to have had an exceptionally fast 'journey' to remission, it does seem that in many GCA cases, once over the often really dramatic initial experiences, it would seem that GCA can often be an easier nut to crack than PMR.

Pre-diagnosis, my PMR pain really floored me in that, as you no doubt already know, I was stuck in bed in agony for months attending rheumy appointments by ambulance and wheelchair.

When GCA joined in the 'fun', I became so ill that I thought I wasn't long for this world - apologies if that sounds overly dramatic, but the head pain, as you know, is like no other, daily nausea and vomiting, jaw/face pain and swelling blurred vision, and rapid weight loss.

Three weeks later, diagnosed and on 40mg Pred, almost all the GCA symptoms disappeared as if by magic within a couple of hours and never returned. Apart from occasional recurring tingling temple pain and blurring of my vision, to me it seemed as though the steroids had actually cured my GCA! However, as I still desperately needed the steroids for my PMR pain, I will never know whether if I'd had just GCA alone I could have reached remission as quickly as Ray.

I know I am blessed that although my previous perfect eyesight deteriorated, I didn't lose my vision and there isn't a day that goes by when I don't think how lucky I was especially when hearing of the experiences of people like you and Ray. And my goodness how much I admire your resilience and spirit.

I'm so sorry for a bit of a rambling post, but you did ask DL!

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

No rambling at all!

Like you I'm sure I had PMR first, I was extremely fatigued, and it took me ten minutes to turn over in bed at night because of pain in my shoulders. I had no pain anywhere else, nor did I lose weight, but as it was never confirmed I shall never know.

Once the GCA was diagnosed, and on Pred, I can say, the pains went (I should hope so at 80mg), apart from funny head for about a fortnight (mind you lots of people say I'm funny in the head naturally) and, touch wood, they've never returned.

That's not to say I'm pain free, far from it but that from OA, completely different.

Hopefully our experiences post diagnosis will help those who are diagnosed with GCA.

Take care.

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Yes, the pain in your shoulders and difficulty turning over in bed does sound reminiscent of PMR pain. Mind you, when talking about our GCA, our symptoms were purely those of Temporal Arteritis, where GCA affects the temporal artery and has the potential to reduce the blood supply to the optic nerve, thus the risk to eyesight. When diagnosed with both PMR and GCA/TA, if the GCA was actually in the larger arteries in other parts of our bodies, then it's difficult to tell what might be pain due to GCA as opposed to pain due to PMR . That's my brain befuddled for another day - hope I haven't befuddled everyone else as well!

[DorsetLady PMRGCAuk volunteer in reply to Celtic]

Why can't it be straightforward?

My late hubby used to say "why do you always have to be bleeding different?" Bless him. I just used to smile!

[Celtic PMRGCAuk volunteer in reply to DorsetLady]

Exactly my hubby's sentiments about me! My new dentist is the latest to be perplexed as to why his recent treatment isn't producing the same results as with his other patients. My GP recently said she hasn't got anyone else like me. Not so much "different" perhaps, just awkward!

[Celtic PMRGCAuk volunteer in reply to raymck]

Good to hear from you, Ray, especially as you're in Club Zero. Thought I should send you apologies for talking about you rather than too you in my replies to DL! Hope the aches and pains don't give you too much trouble - keep taking the pills, as they say - Vit D in this case!