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Posted 4/24/2023 11:20 AM (GMT 0)
upadacitinib (Rinvoq)
Posted 4/24/2023 11:26 AM (GMT 0)
It's not a biologic, it's a jak inhibitor. If they told you it's a biologic they are even more uninformed than we already knew....
Posted 4/24/2023 11:32 AM (GMT 0)
Maybe that’s me reading it wrong then but that’s the plan anyway. Still angry they got me into this but got to move on now and hopefully this works for me
Posted 4/24/2023 3:00 PM (GMT 0)
🤞🤞🤞
Posted 4/24/2023 3:26 PM (GMT 0)

Tblock1985 said...
Maybe that’s me reading it wrong then but that’s the plan anyway. Still angry they got me into this but got to move on now and hopefully this works for me

Well they ought to explain it properly to you.... but indeed, it's a good option (not the only option) with a relatively high success rate so hopefully it will do something for you and fast.
Posted 4/25/2023 2:48 AM (GMT 0)
I hope it works for you! It's a lot more convenient taking a pill than doing infusions or injections so if it works, that will also be a plus.
Posted 4/25/2023 7:51 AM (GMT 0)
Thanks guys. Keep you updated
Posted 5/4/2023 3:42 PM (GMT 0)
Honestly bloody despise this disease I really do. You honestly forget just how horrendous it is when you been well for so long. Even more so, frustrating that my IBD team are basically the cause of this. I’m slightly better but really struggling to get this flare properly under control. Having decent ish days, then seems like 1 step forward, 2 steps back. The 40MG pred isn’t doing it as quickly as I thought. Highly unlikely will have to up to 60MG. Just waiting for approval any day now for the Rinvoq so can start it. Extremely frustrated after being so well for so long and battling this bullcrap again
Posted 5/5/2023 1:11 AM (GMT 0)
Yeah, they really screwed you over. You could ask to go up to 50 mg pred for a week if 40 isn't cutting it. I can't remember how long you've been on it so far. Two or three weeks, right? Should be working by now.
Posted 5/5/2023 8:22 AM (GMT 0)
Yeh nearly 2 weeks on 40MG. Going to ring GP see if i can accelerate the Rinvoq quicker
Posted 5/5/2023 1:25 PM (GMT 0)
Seriously! Thought you would have had it by now!
Posted 5/6/2023 1:11 AM (GMT 0)
Good plan. That is a long wait when you're flaring and you also don't want to be stuck on steroids a long time.
Posted 5/9/2023 1:42 PM (GMT 0)
How are you? Has the new med been approved yet?

I've had to go up to 80 mg of Prednisone a few times.... it took a couple of weeks at 80 to start to notice a significant difference. In the intermittent I couldn't sleep, my house was spotless, and I was a raging witch.

Eventually my GI symptoms calmed down...and we were able to wean me off of it though.

Please let us know how it goes.

Clo
Posted 5/10/2023 9:31 AM (GMT 0)

clo2014 said...
How are you? Has the new med been approved yet?

I've had to go up to 80 mg of Prednisone a few times.... it took a couple of weeks at 80 to start to notice a significant difference. In the intermittent I couldn't sleep, my house was spotless, and I was a raging witch.

Eventually my GI symptoms calmed down...and we were able to wean me off of it though.

Please let us know how it goes.

Clo

Clo this post made me laugh so hard. You described my life to a T right now. Crazy insomniac with zero energy yet my house is immaculate from all the cleaning and reorganizing. I have cleaned out every closet. Organized every can and supplement and sock and bottle of sunscreen. I even went through a box of my paper receipts that I have kept for years. The garage has been swept AND mopped! My bedroom configuration is completely new and I am ordering new living room furniture. Doing all of this while breaking down multiple times per day and screaming at someone or something that broke around the house.

Tblock sorry you are going through this horrible flare right now too. My thoughts are with you. I got used to the good life of being able to drive a car without crapping myself. It really makes you never take remission for granted. I am still wearing diapers anytime I leave the house just because my urgency is still bad.
Posted 6/2/2023 2:15 PM (GMT 0)
Hey guys, just an update as been a horrendous last 2/3 weeks for me but feels like I’m finally coming out of this nightmare. Flare ended up getting out of control with blood etc, so had no choice but to go into hospital unfortunately on the IV steroids. 2 weeks total stay in hospital with no light at the end of the tunnel as i wasn’t improving enough on the IV. During my hospital stay roughly 3/4 days before going home they added Xeljanz as my new medication to tackle it instead of the original Rinvoq plan as could get it quicker. I’m now out the hospital roughly a week. Been on the Xeljanz about 9 days and currently tapering the Pred weekly ( on 50MG at moment) - finally seeing light at the end of tunnel. Stools are not perfect remission stools yet but finally seeing solid consistency with mixture of slush etc. Now down to roughly 4 bowl movements compared to 13/14 in hospital and finally losing the urgency. Not in remission fully but I’m getting out the house now with a bit more confidence and obviously building my strength back up and slowly putting back on the weight. Looks like the Xeljanz has turned the corner for me and hopefully will get me fully into remission and keep me there a number of years like the Infliximab did. Will be having strong words with my IBD team for the mess up they put me in with this. But, on the road to recovery guys and day by day improvements.
Posted 6/2/2023 6:53 PM (GMT 0)
Glad to hear you are finally getting some relief. It does sound like xeljanz is going to work for you! Congrats!
Posted 6/2/2023 7:00 PM (GMT 0)
Always good to read someone is seeing improvement when starting a new medication. Keep us updated when you have time.
Posted 6/2/2023 9:01 PM (GMT 0)
Thanks guys. Certainly not there yet and in remission at the moment, as I’m still seeing liquid stools at points but that’s usually the last thing to go once all the inflammation is tackled. But, pretty much went all day with food without needing the toilet until the evening and generally feeling better so the signs are it’s turning and hopefully working. Hopefully chipping away at the last remaining inflammation daily and that remission feeling shouldn’t be too far off touch wood.
Posted 6/2/2023 10:50 PM (GMT 0)
That's great to hear! Definitely give the Xeljanz some more time. It took 9 weeks on Xeljanz for me to have zero symptoms at all, but I got off steroids about 4 weeks in and only had mild symptoms at that point. Sorry you had to have such a long hospital stay.
Posted 6/3/2023 2:49 AM (GMT 0)
So sorry to hear what you have been through. A 2 week hospital stay is pretty rough! Glad you are feeling better.
Posted 6/6/2023 4:32 PM (GMT 0)
Update- still not quite in remission yet but only been on the Xeljanz 2 weeks but toilet trips are down to roughly 4 a day now. Usually 2 morning and sometimes 2 night so retaining food much better now and obviously urgency has gone. Managing to actually get out and enjoy myself again. The stools are mostly formed but still seeing slush and bit of liquid too, so not quite remission consistency as of yet but getting there daily. Latest bloods few days ago showed stabilising and significant improvement since coming out of hospital so got to think I can’t be too far off remission stage.
Posted 6/6/2023 5:25 PM (GMT 0)
Tblock, glad to see that you are starting to see improvement keep it going.
Posted 6/6/2023 6:24 PM (GMT 0)
Thats really good and fast improvement.
Posted 6/13/2023 7:12 PM (GMT 0)
Guys, just wondering how long it takes to get into full remission on Xeljanz for some people? Been on it just over 3 weeks since coming out of hospital and symptoms have improved significantly, but not quite hitting remission just yet. Going roughly 3 times a day now. Twice In morning usually fully formed. Evening stool usually porridge, little slush with some formed consistency. Eating much better and obviously lost the urgency now. Pred I’m down to 35MG now tapering weekly. Feel I’m so close, but just that last bit of inflammation still lingering
Posted 6/13/2023 11:01 PM (GMT 0)
If you will look at Sara's post on here she said it took 9 weeks for her to get in remission. Keep in mind you can't compare your situation to someone else, you were bad enough to be in the hospital. You are improving & responding, it's just not happening quick enough to suit you, we understand that.

Keep at it give things time, you appear to be headed in the right direction.
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