G C A

[irismeyer]

GCA

I have GCA and being treated with prednisone! It has been 3 yrs! Does anyone know how many years this immune last?

Thank you 😊

Iris

[DorsetLady PMRGCAuk volunteer]

Personally. for me 5.5 to 6 years.

Varies from 3-6 years for most.

[jinasc]

For me with GCA only, 4 years and 11 months.

[Rimmy]

I've had it for 3 years so far with a recent 'relapse' and had to up my dose again so I felt like I was starting all over again - this is not uncommon within close to a 6 year framework. We are all individuals however and you may get 'lucky' or 'luckier' than me !

[Grammy80]

I have GCA, only since last August. A good friend of mine was diagnosed 11 years ago and got to a 'good place' after about 2 1/2 years. To this day she takes 1 mg of Prednisone per day~~she feels great, looks great and is a super active 85-year-old ~!

Next week I drop down to 6 mg per day... I'm feeling a bit tentative about that~! then 4, then 2~Yikes.🤔😏🥴🙏🏽🙏🏽

[PMRpro Ambassador in reply to Grammy80]

Those really are enormous steps down at this stage. I do hope they work OK.

[Grammy80 in reply to PMRpro]

I know...could it be so fast because of the Actemra weekly? When I hit 8 mg I was on that for a month and was so pleased because my system adapted and I had no reaction but I wonder about dropping 2 mg every 2 weeks😏😏...again..maybe it is the infusion of the Actemra in my system. So far, so good. I can guarantee you that if I have any flare...I will not try to be a hero. I'll be hugging that pred like it is the savior it has been!!

The only issue I seem to have is skin tears and slow healing~?? The vision in my right eye sure has cleared up a lot since tapering. I'll be in touch if I have a problem!🤞💖

[PMRpro Ambassador in reply to Grammy80]

It will be - but the Actemra won't ease the reduction steps while the adrenal function must wake up and that isn't really a factor until this sort of dose. Anything you can do to slow it down would be helpful.

[Grammy80 in reply to PMRpro]

I appreciate that advice~thank you so much.

[Cally55]

Just starting my 5th year. Reduced to 8.5mg prednisolone with steroid sparer azathioprine. Both have had side effects, some very nasty. Recently I saw a neurologist expecting to be told that the feeling of having been hit in the eye was something else only for her to say that it was probably GCA and that it did tend to go on!

[pball]

It has been 4 plus years. Down to 2 mg. a day, started at 60mg. and along the way have had a few flares.

Here is hoping I am at the end of this ugly journey.

[Mischevious]

Hi Iris

I am sure you can see that everyone is different but in my case it was just over four years. For me, once the symptoms were under control I felt fine for most of the time.

[Stella3]

Hi, I am in my third year of GCA. I am down to 2mg prednisone. I am excited....started at 60mg and had a rough time in the beginning....

[Sho-Sho]

I have had it for nearly 4 years down to 6.5, come to a bit of a dead-stop at the moment but at least I am getting my old life back again.

[Hidden in reply to Sho-Sho]

That's the aim... Maybe otold life but a good quality of life that you enjoy. 👌👍

[Southmead]

6 years this year. Trying to ease off the Pred, currently on 2.5 mills a day. Reducing to 1. 25 milligrams on April 1st.

When first diagnosed in 2014, I was on 20 milligrams a day. The effect of prednisone was instant, fatigue and stiffness gone. I got down to 10 milligrams of Pred a day, but as soon as I dropped below that the symptoms crept back.

Finally last December I reduced to 5. milligrams a day. I still experience a little stiffness, especially in the shoulders, but no fatigue.

I have found shoulder stretching exercises help a lot. My goal is to be off Prednisone by the end of April.

Incidentally I was informed at the start of PMR, it would only last for 2-3 years. Good luck to all