Prednisone Question

[Mgeorge]

I was diagnosed with GCA May 19 th, 2016. Since then, I've been on megadoses of prednisone, starting at 60 mgs.a day, then 50, 40, and tomorrow starts 30 mgs. Over 3000+ mgs. in three months. One minute rage, the next restlessness and exhaustion. Will the tapering this time help, or is this endless til the GCA is considered cured?

[DorsetLady PMRGCAuk volunteer]

Hi Mgeorge,

Hang in there, things do improve, I promise you!

High doses of Pred certainly throw your whole system into overdrive, and it can be very disturbing at times. You feel completely out of control, I know - been there.

Your body will settle down, it takes a good few months for your system to get used to the Pred, it's a mighty powerful drug to be sure.

The rage and restlessness are certainly side effects of Pred, and will decrease as you get lower. The fatigue is also a side effect but it's a factor of GCA as well, so that can stay with you a lot longer. To counteract that you need to learn to pace yourself, it's very easy to do too much on days you have plenty of energy and then pay for that activity the next day.

Tapering will help the side effects of Pred, but you do need to keep the inflammation under control at all times, so mustn't be done too quickly.

GCA or PMR us not cured as such, but it can be controlled by the Pred until it burns itself out or goes into remission - unfortunately that timescale varies from person to person. Mine took well over 4 years after diagnosis, plus I did have it for quite a long time before it was recognised. Although I almost sure it's gone, I an still reducing the Pred, hoping to be down to zero within the month - so then I will find out for sure.

It's a long journey, but it does improve along the way. Take care.

[markbenjamin57 in reply to DorsetLady]

Well put, DorsetLady. I couldn't agree more.

[Mgeorge in reply to DorsetLady]

Thank you. It helps not to be alone. I'm in North Carolina, USA and don't understand why I can't find a nearby support group.

[Hidden in reply to Mgeorge]

Are you aware of the Vasculitis Foundation in the USA, they have local groups.

vasculitisfoundation.org

[Toshiespeaks in reply to Mgeorge]

Mgeorge, There are also Facebook groups in the US: Giant Cell Arteritis / Temporal Arteritis / GCA; Prednisone support; and Vasculitis Wellness Group. I like PMR GCA UK (this group is much more active). Since GCA is a rare condition, especially in younger people, information is very limited and sometimes conflicting, but it is out there. You are definitely not alone in this struggle. Good Luck.

[PMRpro Ambassador in reply to Mgeorge]

There are only local support groups where a few people get together and form them - they don't appear on their own!

There are quite a few US participants on both this forum and the patient.info one which are both based in the UK (hence the prepoderance of offers for the UK)

patient.info/forums/discuss...

so a shout-out on either with your location (not your address or contact details) might result in finding others within reach.

There is a US support site but I don't think it is particularly active - without activity it won't grow.

[klairv0yant in reply to Mgeorge]

First, I'm here I'm here (circa Horton hears a who) . In Ohio- you're correct, not a plethora of info in the states- pharmautical companies can't make mega money off the "elderly" common disease.

Second, I had started at 60mg and lost my mind literally, ended up gambling away more money than... Well never mind that...and had an rage so strong it felt as if I was having a seizure . Next day went to doc and dose lowering helped. I'm presently at 25mg; I had lowered to 20 but, my symptoms returned. I don't like the side effects of the med, but the symptoms were worse.

Listen to your body, don't try to do to much, be kind to yourself and rest often. Those are MY DAILY reminders. It's difficult if you are an active mind/body persons for sure!

[Mgeorge in reply to klairv0yant]

FIrst I Saw this. Not too technical. My 60 and all the drops now to 30 have made me either a dishmop or a foul mouthed sailor. Good thing I live alone and nobody can hear me. It's only been three months. But feels like forever. I see the RA tomorrow and hope to , at least, even out

[Pat46 in reply to DorsetLady]

I don't know how I'd cope without this site, especially your post DorsetLady. Some days I wonder if I'm imagining how I feel and maybe being a bit of a baby, then I look on here and realise it is the GCA condition making me feel this way. I got to 25 mg prednisolone but was having a lot of aching/pain in my head, went for blood tests and was told they were fine and to carry on with that dose, two days later I increased to 30 mg and things started to improve within a couple of days. Without reading your posts I wouldn't be on the mend (so to speak). I think the doctors know so little of our conditions that they feel they just have to follow the text book recommendations and don't take on board what we say, being generous I don't suppose we can blame them too much.

[DorsetLady PMRGCAuk volunteer in reply to Pat46]

Hi Pat,

Thank you. Unfortunately I think we've all felt like you have at times, I know I certainly did. Afraid my original GP never did diagnose my GCA, and I felt that I knew more than her through the first year of my treatment, in fact my husband said to me after one appointment - she's supposed to give you advice, not the other way round! I suppose because she missed many opportunities to diagnose I didn't really have confidence in her anymore, so for a variety of reasons I changed surgeries. Current GP is much more knowledgeable thankfully.

I agree it's difficult for GPs, they don't see GCA or PMR that much, but as you say it would be nice if they listened a bit more at times.

I also think that because my journey has been quite extreme, and I have been through some very rough times I can empathise with most people on this site. Hopefully my experiences, along with many others, does help those new to both illnesses.

[Gosingen]

Dorset lady has said it very well. Pace yourself and you are not alone. Things will improve with time and patience.

All the best to you.

[pammy_hyland]

Yes very simular to me DorsetLady and very well said. It took me about 5 years to get down to 3mg which I am on at the moment but I am feeling fine but the muscles do feel very weak in my legs especially as I can't get up if I get down but you forget what is normal for your age after being bionic on steroids, so here's hoping I'm in remission .

[katpat]

Hi Mgeorge - I concur with others who have replied. Wanted to let you know that I have GCA diagnosed in Dec 2014 (along with PMR). I am in Tennessee. Maybe we can chat. Yes, it would be great to have a local support group. I find this forum the best and so very helpful.

[Mgeorge in reply to katpat]

GCA is so surprisingly rare. I don't know what to expect. Aren't symptoms supposed to be gone once you start on prednisone? I still have temporal pain after 3 mos.

Thank goodness for this forum!

[PMRpro Ambassador in reply to Mgeorge]

No, not necessarily though I can't speak from personal experience. There should be a great improvement but it may not be 100%. Have you reduced your starting pred dose? There is work that shows that there is evidence of inflammation present even after 6 months on high dose steroids - that means above 20mg. And if there is still inflammation - a reduction in dose can be enough to let it make itself known again.

[Mgeorge in reply to PMRpro]

Good to know, thanks

[jinasc]

Follow this link, read up and click on the map and see if their is a support group near you.

pmr-gca-northeast.org.uk.