Encouragement regarding tapering....

[Grammy80]

This is part of an email I received from a friend who was diagnosed with GCA 11 years ago and still takes 1 mg of prednisone per day. I emailed her in New Hampshire because of my concerns about 'too rapid a taper'. I wondered what she experienced.

These are her words, a portion of her email to me:

This whole phase you are in is attempting to reduce the dosage as quickly as possible and getting the blood picture (sedimentation rate) back to normal numbers. If it is too rapid a process the blood picture will show that and those numbers going in the wrong direction will mean having to increase the meds dosage….for me that happened quite often and I had to raise the dosage and remain there for weeks to months before attempting the reduction, again. If you are dropping fairly rapidly in dosage and the blood picture is good then enjoy that success. No matter what, you will have to suffer the symptoms of meds reduction….so keep the pillow, throw and cat nearby. You have to look beyond the necessary process to being prednisone free….or at least very low dosage. Until that happens the GCA is in control. Just keep being thankful there is this one, and only one, medication available to beat this disease. Otherwise, you….and I…..would both be dead. Blunt, but true.

It is me again...I find her perspective so encouraging and hope some of you do too. I can deal with things and take a lot of 'you know what' when I know it is part of the journey to get to the prize. She is a vital 85 year old and has fought and beat cancer too. I love her 'starch'~!

I'm so thankful for ALL of you....the journey is lighter not being alone~!👬👬👬👬👬👬👬👬👬👬 The Forum Rules!!!

[Luciejc]

Thank you for sharing Marilyn...really needed to read this today !

[Grammy80 in reply to Luciejc]

😊I might just put it on the refrigerator!!💗

[enan-illuc]

Grammy80,

Your friend is very wise. Thank you for posting this.

[Grammy80 in reply to enan-illuc]

Yes...she is one of these folks that can develop a perspective and then she develops a process of dealing with it~~with many things in life. 😉😉

[Blackcatlover]

This has helped me realize even more that a slow taper is the way to go. It truly is a journey not a race to be off Prednisone. Thank you for the words of this brave lady. I feel so at peace with all the wonderful advice I have received from all on this site. Thank you.

[Grammy80 in reply to Blackcatlover]

Me too!! I'd be lost without the forum!

[DorsetLady PMRGCAuk volunteer]

The gist of her email is very good...but GCA does not kill you. You might feel half dead some days, but in the metaphorical way not the literal.

But do adhere to her “slowly does it” message.

[PMRpro Ambassador in reply to DorsetLady]

Unmanaged GCA can result in stroke or other cardiovascular incidents. So it can kill if ignored.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes unmanaged can, I agree....but rare. ....and not quite true that GCA patients would be dead without Pred, which is what Grammy80’s friend implied.

[Grammy80 in reply to DorsetLady]

Last September when I was on 125mg of prednisone per day and my numbers were not affected after a month and my blood pressure and sugar rose and the pain increased my rhuematologist admitted me to the hospital for IV methylprednisolone, 1000mg, and observation because he considered me at a high risk for a stroke. My head felt like it was going to take off on its own. I had experienced a stroke at 42. My friend was 74 when GCA became her boss and I am 79...I think strokes are more of a concern just because of the condition of our arteries at these later stages.

When my friend was diagnosed and treated 11 years ago there was only prednisone...and as we all know, trial and error and dosage manipulation...and you hope that you will get to a manageable point. Her point, the way I interpreted it, was 'at least we have prednisone' and there would be no hope if the disease was untreated. She can always find something to be grateful for or just develop the courage to 'ride it out.'

I know she didn't mean to imply it was a death sentence. 🌸🌸

[Luciejc in reply to Grammy80]

Both you and your friend are such an inspiration! Are aneurysms a concern?

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

No she probably didn’t mean it, but compared to many other illnesses, GCA is not the worst thing to deal with...and sometimes in the midst of what’s going on, we forget that. Human nature.

Plus I’m sure in the bad old days lots of people “got through” GCA and PMR without medication....but it wouldn’t have been pleasant that’s for sure.

[Grammy80 in reply to DorsetLady]

You are so right~and such a treasure of support!!💗💗

[Blearyeyed]

Nicely put , that's why we are always taught to listen to our elders.

Thank her from Us and send her our love too xx

[Grammy80 in reply to Blearyeyed]

Believe me....I'm always delighted when I find an elder~!!! Thanks Bleary....she is what I call an iron lady~! 🌸🌸🌸

[Jackoh]

Such wise , encouraging words. X

[Grammy80]

She has been a friend since the 1970s...I worked for her husband...she was an RN but they had 6 children. I've always admired her appreciation for life, her faith and that strong core of courage!! Thanks~Jackoh