I’m so excited

[PMR2011]

Okay, I know it’s too soon to celebrate, but this is the first day in 8 years I did not take Prednisone! Have been on weekly Actemra for a year and DSNS tapered. I had to tell someone and I knew you all would understand! (Feels strange...like not having your Teddy Bear or security blanket). Cheers all!

[Hidden]

WOW! Fabulous! Good luck... 🤞🏼

[Constance13]

You could always put a pred tablet in a wine glass on your bedside cabinet to “celebrate’ coming off them.😂😂😂😂

[teesher in reply to Constance13]

Or just put wine in the wine glass.

[PMR2011 in reply to Constance13]

Hah, like that idea. Does Pred go with Red or White?

[isabella2015]

Well done!

[SheffieldJane]

That is a happy situation to be in.. I am glad for you and a bit jealous!

[PMR2011 in reply to SheffieldJane]

Don’t be jealous, you’ll have your day! And...it’s a bit soon. Then there’s figuring how to taper from Actemra. One step at a time!

[DorsetLady PMRGCAuk volunteer]

Well done! Let’s hope things go smoothly for you.

[PMR2011 in reply to DorsetLady]

Thank you! How long did it take you to get used to not taking Pred every day?

[DorsetLady PMRGCAuk volunteer in reply to PMR2011]

Not all that long, but my GCA had gone into remission before I stopped the Pred.

But I did keep some in the bathroom cupboard until they ran out of date - just in case. Fortunately never need Pred them. Hopefully the same for you.

[PMRpro Ambassador]

Fingers crossed!

[Rose54]

Fingers crossed

[Hidden]

Oh Wow! 🥂🍀🌺

Congratulations 🎉

[piglette]

I went out to lunch with a friend who had her last steroid for PMR the day before yesterday after six years. I celebrated for her with a battered halloumi and a sticky toffee pudding!

[PMR2011 in reply to piglette]

I had to google halloumi. Sounds delicious. I couldn’t live without cheese!

[piglette in reply to PMR2011]

I love cheese. I could not find any good nutrients in my lunch, it was delicious, I had chunky chips too!

[PMRpro Ambassador in reply to piglette]

Sounds a bit Glaswegian, battered halloumi. Though they'd batter the sticky toffe pud as well...

[piglette in reply to PMRpro]

It is the vegetarian fish and chips.

[PMRpro Ambassador in reply to piglette]

Fair enough - can only be better than the vegan concept...

[piglette in reply to PMRpro]

It is fantastic, battered halloumi, chips, mushy peas and tartare sauce.

[Angiejnz]

Amazing progress, enjoy 🍾🍷

[Marilyn1959]

Fabulous news. Thanks for sharing.

[PMRCanada]

How exciting. 8 years....well you’ve certainly put in your time. Hoping to Actemra tapering goes well too. All the best moving forward!

[PMR2011 in reply to PMRCanada]

Thanks, yes not nearly as much info on how and when to taper Actemra. And I really don’t want to be back to square one after 8 years!

[Telian]

Congratulations and fingers crossed - think there's a few of us envious. Well done.

[York54]

Great news!! Well done, you have served your time!! 👍👍👍

[Jackoh]

Great news! Long may it continue! 👍😀x

[yogabonnie]

wow! celebrate!

[Linny3]

Could you please tell me your experience with actmera? My dr. wants me on it but it scares me.

Thanks

[PMRpro Ambassador in reply to Linny3]

Use the search function at the top right of the page. Type in Actemra - make sure you spell it correctly - and you will get a list of past posts about it, there are a lot.

[PMR2011 in reply to Linny3]

Hi Linny3, I have had a great outcome with it. No side effects other than slight headache on day of injection which is usually managed by hydrating better. I have good energy levels and symptoms have been well managed. It is not for everyone tho. My advice would be to research it thoroughly, then actually list out pros and cons. You will also want to investigate payment as it is very expensive. Good luck.

[Linny3 in reply to PMR2011]

thank you for your reply an advice

[Barbshow]

Hurray!!

[Annie3737]

Well done you must be so pleased. Hope all goes well for you. Do you have any follow up checks ? I came off pred in June 2020 after 5 years having been diagnosed with GCA. I haven’t had any blood tests since then, and do have that nagging feeling symptoms could return. I’m not sure what the follow up care is if any. Does anyone know if follow up care should be in place ?