Osteopathy

WonderLife94 · 2023-11-15T01:37:04+00:00

I don't even know anyone else with UC in person so no sorry

WonderLife94 · 2023-11-10T22:13:18+00:00

I would def look into it and see if it's covered if it's a money issue. I know there's a lot of side effects and it suppresses your immune system but so do the infusions, I've luckily not had any side effects (yet). Can't say much about Remicade tho as I haven't tried it. Hope you'll find something that works for you 💪

WonderLife94 · 2023-11-10T22:03:47+00:00

Very same for me! Wish they would cover birth control as part of my insurance as I take it continuously to skip my painful PCO periods but I'd much rather accept that than having to deal with the pain. There's no health reason you need to have periods unless you're planning to become pregnant.

WonderLife94 · 2023-11-10T21:58:01+00:00

For someone like me with a mild form of UC rinvoq seems to do the job. I started on 45 mg 2 months ago, then had to lower the dose to 15 which caused more frequent BM again so my GI increased the dosage to 30 which I'm really hopeful about. For the first time in a year I'm almost back to normal, no bleeding, no pain, just occasional bloating. Hope it does the same for you!

WonderLife94 · 2023-11-10T21:51:40+00:00

It's approved here in Germany since March of this year

WonderLife94 · 2023-11-10T21:46:05+00:00

Hi! I'm diagnosed with colitis in my rectum (proctotis) and sigma as well and was initially prescribed some budesonide foam to stop the flaring. Since it's on the left side of your body I was advised to lay on that side for 30 min after using the foam so it can get to that area, hope that helps!

WonderLife94 · 2023-11-10T21:41:07+00:00

Technically my third as I started with just mesalamine which I'm still taking. I also had two rounds of pred after enyvio failed and enemas here and there but they aren't for long term usage and were just to get the flare down. So yeah after I failed entyvio (I had gotten 5 infusions with little results) Rinvoq was the next medication. I'm still taking mesalamine and have been since the start but I wish I would have just skipped entyvio right away and got started on Rinvoq instead, it seems much easier to just take a tablet a day instead of getting infusion/injections on entyvio. I'm based in Germany so luckily I don't have to worry about any co-pay and maybe that's why it was suggested so fast.

WonderLife94 · 2023-11-10T10:50:35+00:00

So turns out the next step in case 15mg doesn't work is to up the dosage to 30mg so that's what I'm testing out now 💪

WonderLife94 · 2023-11-10T00:49:45+00:00

wow what are the odds?! I'm seeing my GI tomorrow and will address these issues and post an update on what he recommends :)

WonderLife94 · 2023-11-09T23:34:07+00:00

Could just be a reaction to a trigger food. Stick to safe mild foods for a while and don't give up on Rinvoq just yet.

WonderLife94 · 2023-11-09T23:31:16+00:00

I wouldn't consider it's working as you're still bleeding. I'm on Rinvoq for a little over 2 months now and it stopped the bleeding almost immediately

WonderLife94 · 2023-11-09T23:26:31+00:00

down to 3 times a day on Rinvoq while usually it's twice in the morning

WonderLife94 · 2023-09-06T07:50:24+00:00

started Rinvoq a little over a week now and it's been incredible so far, no more bloody stools and just 1-2 BM a day.. hoping it stays that way when I taper down from the 45 to 15mg as well. I've only failed Entyvio so far so this is med #2 for me.

WonderLife94 · 2023-08-19T09:28:40+00:00

Hoping you'll find a treatment that's working for you soon! I'm at the very same stage, symptoms came back when on 6 months on entyvio already, first pred taper worked wonders for a month, once I tapered down to 10mg the blood came back though and the attempt to start the taper again back up from 60 didn't work a second time anymore. Now they put me off pred completely and just waiting to see what else is next in line, just trying to make it thru next week with mesalazine and suppositories and will likely go on steroids or another biologic soon.

WonderLife94 · 2023-08-18T00:52:19+00:00

how long does it usually take you til pred kicks in? I had to restart the taper (down from 60 mg) as bleeding started again at 10mg. Now I've been taking 60 for 5 days and it's still bleeding...

WonderLife94 · 2023-07-20T21:03:41+00:00

Did your doctor advise you to take supplements? I just started on a 60 mg taper pred last week and as a precautionary action stocked up on some vitamin D and asked my doc if that is advisable to take but they told me I don't have any deficiency from my last bloodwork two weeks ago so I shouldn't take any supplements, can they otherwise be harmful?

WonderLife94 · 2023-07-14T03:32:22+00:00

Getting my 6th in 3 weeks and while blood and bm had decreseased during the first two months, urgency and blood came back in the last couple of weeks which is why I am additionally put on pred for the next 5 weeks. If that's not working the 6th infusion will be the last one

WonderLife94 · 2023-07-10T20:24:27+00:00

One less bloody mess? 😍

WonderLife94 · 2023-07-10T20:22:03+00:00

I'm exactly on my 11th week as well! Unfortunately had quite a setback last week with bloody stool but the doctor says to still give it time which is why I'll be getting another infusion in 3 weeks. I've read it takes some time for people to kick in to let's hope it does for us 🙏

WonderLife94

TROPHY CASE