Biopsy

[Lilymaerose]

Hi everyone, I have just had the results of my biopsy for GCA they are saying that there is signs that it has burnt itself out. My doctor & rheumy are saying that if I can get off the steroids gradually and the headaches etc don't come back then it looks like the GCA has gone into remission. My blood results have gone back to just above normal and they were up really high and rising. I have to have my bloods checked every month to make sure they stay in the normal bracket.

Still waiting on the MRI brain scan and eye hospital back to see the rheumy on 20th July

I was diagnosed in December '14 with GCA and PMR initially put on 60mg of steroids which made me feel great for about 6 weeks, then as I was reducing the steroids I also got a lot of the side effects of the steroids as well. Managed to get down to 35mg daily. Went through 8 weeks April and May time feeling the worst I've ever felt and got really depressed as well, loosing any confidence that I was ever going to feel better again.

Then in June just before I had the Biopsy the headaches eased up and I just seemed to gradually start feeling better. Still have no energy, I sit down and fall asleep, but learning to deal with this and let my body decide my pace instead of my mind. I have now been a week on 30mg without any serious headaches and have got some 1 mg preds to wean myself off more slowly.

I am not having so many down days and am looking forward to loosing weight and hoping the GCA really has gone into remission.

Has anyone else had this experience, of GCA burning itself out then going into remission? Am I being optimistic that I am going to be myself again.

Lesley

[Celtic PMRGCAuk volunteer]

Lesley, yes I am one of many people for whom GCA has gone into remission, in my case together with PMR. However, it took between 5-6 years of reducing steroids to know that both diseases had really 'gone to sleep'. It can take a year or so for our bodies to totally recover even after coming off steroids, although I reduced so very slowly in the last year or two that I think things pretty much returned to what is my 'normal' fairly quickly.

If the biopsy was only recently, then of course it was unlikely to show any signs of GCA after being on steroids for many months - the large cells indicative of GCA would have resolved within weeks due to the treatment. It's a good sign that your blood tests are approaching 'normal' (not that many of us know truly what our 'normal' is!), - I found both the ESR and CRP always corresponded with how I felt so were useful as a guide to whether I reduced or not.

What a relief for you that you are feeling so much better than of late, and I hope I've given you the reassurance that you seek.

[Lilymaerose in reply to Celtic]

Hi Celtic

I can cope with that, I just didn't want to get my hopes up to find I had no end to this. I actually didn't think they would find any sign of GLA in the biopsy but they said there was definitely signs of it burnt out. I was expecting a negative result.

If you are in remission do you feel as well as you did before GCA and are you totally off the preds?

Lesley

[Celtic PMRGCAuk volunteer in reply to Lilymaerose]

Lesley, yes I have been off Pred for 3 years now. As for whether I feel as well as I did before GCA and PMR, hmm! I did for quite a while, but am finding a few niggling problems now - probably all related to advancing years rather than anything else, after all I am now nearly 10 years older than pre-PMR/GCA! Just to further reassure you, my GCA symptoms subsided long before those of PMR. So stay positive - you WILL get there.

[Lilymaerose in reply to Celtic]

Thank you Celtic

I had almost given up in April and May as every day I seemed to get worse. So for all those people that feel so bad you can also turn the corner even if it doesn't feel like it at the time.

Lesley

[polkadotcom]

Not sure, Lesley. This new me and my new normal are not the same as when pre-PMR diagnosis. But then, I'm several years older (well, quite a few really). Don't forget that however long it has been you have aged by that amount also.

I'd be a bit cautious to save myself any disappointment; I have no idea on what grounds your docs are saying that it has burnt out, and it is the first time that I've come across that situation. Medics able to take a giant (no pun intended) leap of faith in order to announce that prognosis have not come my way.

You may be one of the lucky ones where GCA (and/or PMR) behaves in a textbook manner which can be relied on. I, and others like me, haven't had that - to say the least of it. I haven't even got inflammation markers to help things along. Mine have always stubbornly remained in the low end of normal, no matter how ill I've been.

I've got my fingers crossed for you.

[Lilymaerose in reply to polkadotcom]

Hi Polkadotcom

I was expecting more of your type of reply than Celtis. But happy with both.

I have come to understand from the forum that this illness is really unique in the fact that it seems to affect everybody differently, what affects one badly someone else copes with well, I suppose this is the idea of the forum.

I have been lucky in some things, my doctor spotted the symptoms before I lost my eye sight, unlucky in others as the preds have not been good to me and I have had lots of side effects which had counteracted me feeling better from the GCA and PMR.

I also have cronic arthritis of the knees and copd (asbestosis) which has complicated my case as well. My lung funtion was at 29% when I was diagnosed, I had got up to 85% from cycling. Now it is running at 62% and I am using my pump every day. The doctor says this is due to the steroids and the extra weight.

I just didn't want to get my hopes up for a positive result to have all hope dashed again.

Thank you for your reply

Lesley