Grateful to be at 10mg finally

[potterylady]

Hi everyone, after 21 months of GCA and PMR I am finally down to 10mg. I tried Methotrexate but the side effects were too much. I took weekly injections for 5 or 6 weeks. Absolute fatigue, weakness, unable to think of words while trying to speak.... it was awful. Feeling much better after stopping.

It's been over a year since I've been on as low a dose as 10mg. When I was before, I had a terrible flare and had to go up to 35mg for a long time, struggling to taper for the past year. I have more energy since getting to 10mg. I hope I can continue to taper by 1mg per month. Wish me luck!

Sending healing thoughts and gratitude to you all ❤️

[Lenore58]

Oh yay! Glad to hear your positive report, Jill, and wishing you all the best! Did your eye issues resolve?

[potterylady in reply to Lenore58]

Thanks Lenore! My eyes are still different, from the steroids I think. They haven't been bleeding lately. Vision is totally opposite of what it was before. I don't need reading glasses, but it's fuzzy at any distance. Oh well. I can't complain.

[SheffieldJane]

wishing you all the luck and healing!

[potterylady in reply to SheffieldJane]

Thank you so much!

[PMRpro Ambassador]

Since you have struggled so much I'd recommend no hurry in getting below 10mg. One very respected PMR group developed a taper that involved a year at 10mg and that brought the flare rate down to 1 in 5 from 3 in 5. Prof Vanessa Quick published it as a trainee in Bristol England but still uses it in Luton England where she specialises in GCA.

rcpe.ac.uk/sites/default/fi...

[potterylady in reply to PMRpro]

Thank you for this! So even though I'm 21 months into this, would you agree with staying at 10mg? I'll read the article now.

[PMRpro Ambassador in reply to potterylady]

Not for a whole year, but don't rush to get lower, listen to what your body is saying and just 1/2mg at a time. You aren't really 21 months in - more like a year and a tough one at that.

[potterylady in reply to PMRpro]

Sounds good.

[potterylady in reply to PMRpro]

Oh yes! I had read that article. I forgot about it though. It's good to hear 10mg for GCA for 2 years. I'm just glad I'm down to 10. Regarding the length of my illness, I must have put the wrong date on my profile. It will be 2 years in July this year. It started July of 2022. Thank you so much for your very helpful input all this time. I don't know what I would have done without it.

[Grammy80]

Good for you! It was four years before I got to 10 mg, just this year. At each taper, I stayed a month....I believe I dropped by 1mg until 5, then by .5mg. I go through an adjustment period each time as I'm sure you do. Today, I would say I feel great....I wouldn't mind staying at 1mg..forever. (My rheumy doesn't think metho does anything for GCA and never prescribed it)

I've been on Actemra the whole journey. Have you had Actemra? I was a poor candidate because of other health issues but have had no problems these five years. It may make your journey easier with fewer ups and downs. I'm so happy for you...I'm an artsy soul myself.💞

[potterylady in reply to Grammy80]

Hi Grammy! I was on Actemra for about a year I think. I had side effects from it. Horrible headaches. I had no idea it was from the Actemra and kept upping my steroids. When I stopped the Actemra, the headaches greatly improved. I'm so glad you're on 1 mg!! What a dream!

[Grammy80]

I'm sorry to hear you had a bad experience, it is the first I've heard of one. Thank you for the cheer!! it has been five years in the making. I'm not quite ready to celebrate just yet.💞

[potterylady in reply to Grammy80]

I hear you! This disease leaves us so frightened of celebrating, knowing it can come kick us in the behind. Well, I'm happy we have each other to hold each other up. 💞