It's Seenie. Remember me?

Oh man, you jogged my memory regarding the weaning off hell. I was on 50 mg and when I realized how bad it is for the body I stupidly self weaned way too fast. I truly thought it was a bit of dying. When I got down to 15mg, I could only wean at another 1/2 mg every 5 days or I was a basket case. IF there was no other choice, I would probably settle at 7 mg/day and feel pretty good. I do understand the long term problems associated with prednisone but how does one decide between quality of life and quantity of life? In some ways we all are awaiting the next med combo that does it all. I’m pretty sure I would be much worse if med free. Maybe those of us contributing to this site are the worst cases and many are in remission and not processing as we do.

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Hey! Soooooo good to “see” you.

I’ve been on Cosentyx for 16 months, I was so hopeful when Simponi failed after 7+ years but it’s blown out for me. Totally and utterly. But it’s so good for so many, my fingers are crossed for you. My wagon is now firmly hitched back to an anti-tnf, etanercept this time … just waiting on delivery.

Feel well again soon.

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Jules! Great to “see” you too! I had no idea (or maybe I’d forgotten) what a trial the biologic-switch thing is. I’ve noticed an uptick in my energy level in the last week or so, so that’s good. Either that or it’s a damned good placebo effect. I think my knuckles are less swollen too. If this doesn’t work, I’ll be shopping for a new tnf-inhibitor too.

How is your menagerie doing?


Good grief, Poo_Therapy! “fizz” from 5 mg? Oh my, girlfriend, that’s a big effect from very little drug! And with the fractures you’ve had I’d be steering clear of it as well.

As for the biopsy/colonoscopy thing, I get a routine colonoscopy every 5 years because my father died of colon cancer. It’s really just tourism – they just look, and snip polyps or take biopsies if they see anything suspicious. (They’ve never seen a sign of trouble in me … guess they don’t know me well enough yet, LOL). I will discuss the bowel “thing” with my rheum and doc, though.

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Aaaaamos … are you making me the butt of a joke?


Wellll…if I did, would it crack you up?
It took me 25 years before I realized that the shampoo my wife bought for split ends was for my hair!!:wink:


In @Poo_therapy’s defence, 5mg of the enteric-coated ones (budesonide) is worth 17mg of prednisone, so definitely at a more buzzy level.

They told me I shouldn’t get side effects from the enteric coated ones, but I did too - not as obvious but still there. I was on 9mg and it did almost nothing for my gut, and sure as heck did not help my PsA. I’m sorry @Poo_therapy, another med down - does that mean you are looking for something else, or is the azathiopurine working so well you can just keep taking that and Costenyx?

I didn’t know that @Jen75 no wonder I buzzed on it. And thankfully the aza has already started to work so need of any steroid or indeed stretching out Cosentyx either. I’m beyond thrilled. xx

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That is so wonderful to hear, I am really pleased for you!

Seenie, you are the PsA whisperer to me! I am so sorry that you are “it” right now.You single-handedly kept me from total despair during the early stages after my diagnosis! I was so sick, and the”gap” loomed so large. Your advice, knowledge, kindness and never-give-up philosophy kept me from complete hopelessness. I am quite well right now, methotrexate and a bio-similar seem to be doing the trick, for the moment. As you are discovering, again, this enemy is so sneaky; adept at wreaking havoc on our contrived sense of control. Still, I hang on to a sense of well-being as often as possible. Sending all my best wishes that you can tuck all your symptoms into a manageable new normal, just as quickly as possible. Cheers, my dear.


My gut feeling is if you’re seeing any change then that is a positive thing and Cosentyx will be fine and dandy for you. My unusual experience of absolutely nothing, no skin improvement, no joint/enthesis control and a few annoying side effects is mystifying but hey ho. Hopefully etanercept will suit me better.

Sadly my menagerie is down to one elderly cat and the lunatic dog, who is still crazy at 4.5 years old! How is Sooz?


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Good luck with the Cosentyx! You are doing great. I find I have flares at that bleak midwinter point. Then I usually feel better and better as Spring and Summer progress. You hang in there. You’re doing wonderful work.
Lucky for me 15 mg/week tablets of Methotrexate are still working. But if I have any red wine or lots of nightshade vegetables (like eggplant), it kicks off a mini-flare so I need to stay away from those.

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