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Posted 5/27/2018 5:33 PM (GMT 0)
Mapesg - How are you getting on with the trial ?
Posted 6/2/2018 5:41 PM (GMT 0)
Barnsbury,

The short answer is my UC is decently under control now! about 3 trips a day with very little blood and not much urgency.

But my skin is going nuts with acne and other blemishes. Seriously nuts. Right now I’m happy to take healthier insides over bad outsides but it’s a struggle. The skin is bad enough to keep me in a lot of pain and discomfort and of course social discomfort as it’s primarily on my face. Seems I’m having an unusual side effect to the med.

I did most likely get re randomized into the placebo group. Thankfully my decline was slow but pretty obvious. Got moved back to 15mg about 5 weeks ago. After a couple weeks I settled into my decent 3 or so trips a day routine.

Need to crack this skin issue though as it’s driving me nuts. While probably on placebo my skin started to recover. So seems pretty clearly related to the med. Though I have a history of bad skin (which led to many rounds of antibiotics when I was younger which likely helped sow the seeds for getting UC). So it’s all linked. Just trying to focus on the great progress inside but some days it’s rough and I consider coming off the trial.

How are things with you? Oh I also ran into a friend of a friend who’s in the same trial! They started a little before us. Did well. Went down hill after being rerandomized into the placebo. Then bounced back and is doing great once he was back on the real med. no side effects for him thankfully.
Posted 6/6/2018 11:04 AM (GMT 0)

mapesg said...
Barnsbury,

The short answer is my UC is decently under control now! about 3 trips a day with very little blood and not much urgency.

But my skin is going nuts with acne and other blemishes. Seriously nuts. Right now I’m happy to take healthier insides over bad outsides but it’s a struggle. The skin is bad enough to keep me in a lot of pain and discomfort and of course social discomfort as it’s primarily on my face. Seems I’m having an unusual side effect to the med.

I did most likely get re randomized into the placebo group. Thankfully my decline was slow but pretty obvious. Got moved back to 15mg about 5 weeks ago. After a couple weeks I settled into my decent 3 or so trips a day routine.

Need to crack this skin issue though as it’s driving me nuts. While probably on placebo my skin started to recover. So seems pretty clearly related to the med. Though I have a history of bad skin (which led to many rounds of antibiotics when I was younger which likely helped sow the seeds for getting UC). So it’s all linked. Just trying to focus on the great progress inside but some days it’s rough and I consider coming off the trial.

How are things with you? Oh I also ran into a friend of a friend who’s in the same trial! They started a little before us. Did well. Went down hill after being rerandomized into the placebo. Then bounced back and is doing great once he was back on the real med. no side effects for him thankfully.

Hi, I am glad to hear your UC is better. But sad to hear of your skin issues. I hope you can get that resolved and you dont end up having to leave the trial.

I was doing great but since I tapered my prednisolone to 2.5mg I am suffering again. Its not as bad as before. I could never get down to this level of Pred without the trial drug. But my symptoms are not great. I was having 2 to 3 BMs a day. Now it has crept up to 5 or 6 BMs. Often with mucus. Urgency is always an issue with me. And I have to wake up for the first BM at 0600 AM which I class as a nocturnal BM.

I hope things settle. I am steroid dependent so this was always going to be difficult.
Posted 6/14/2018 6:30 PM (GMT 0)
Ahh steroids, fun stuff. I've just been put back on 20mg prednisone at the dermatologists suggestion. Within almost just hours of starting it on Saturday I started to feel some skin relief. Effect has continued. Basically my bad areas/cysts have stopped growing and are starting to calm down. There's enough overall damage / impact area that I look like a bright red burn victim. But I'll take over my previous contender for world's worst acne face.

So it now is starting to look like my skin is essentially prednisone dependent. Thinking back I had a very bad outbreak back on Remicade when I dropped from 40mg pred to 20mg. Also dropped from 20 to 10 near the start of this medication trial. And weened off about 3 months ago. It's all lining up now that prednisone drop = crazy acne. It's not that uncommon to see bad skin as you drop pred but I seem to have it several orders of magnitude worse; and it didn't fade after a few months off pred, it sped up rapidly.

Sucks to be stuck back on pred, but at least I have a bigger piece of the puzzle now and probably don't need to blame my skin on the study med. So now to get my skin as under control as possible and then start pulling off the prednisone again, but not in any rush.

Hope you are hanging in the barnsbury; sorry yours symptoms have started to act up again. I'm kinda all over the map, probably due to the stress / prednisone etc. Having some great 2 BM days and some odd 5-6 ones myself as well. Hoping it settles down as I calm down from this skin ordeal.
Posted 7/15/2018 4:39 PM (GMT 0)
Hi mapesg

How are things going? How are your UC symptoms now? Did the skin acne improve?

I continued to worsen. Was having upto 10 BMs a day and started seeing blood again.

I was told that I could increase my pred again but I dont want to, I am so sick of it. So, I am staying on 2.5mg. On Friday, after another loss of response appt, I had my trial drug dose increased from 15 to 30mg. I really hope that this will help me get out of this flare. It is worrying.

I also got bad acne recently, I seem to get acne as the pred leaves my system but its not as bad now as it was last week. So it might be settling.
Posted 7/15/2018 9:27 PM (GMT 0)
Barnsbury,

Really sorry you are going downhill. I hope the bump of dosage gets you back on track.

After trying a few things including a short course of antibiotics my dermatologist strongly recommended going on prednisone to try and stop my out of control skin. Sure enough even just hours after taking 20mg I could start to feel relief. A few days later it was under control. Now after a couple weeks of healing I’m back to pretty normal skin. So yeah I’m now in dance with prednisone. Started a slow 2.5mg taper. Just got to 15 today. So far so good. But I strongly suspect my skin goes nuts after I get near 0.

Sucks to be in this prednisone dance. But it’s way better then my skin and guts inflaming massively at the same time. My UC symptoms have been pretty steady through all this. 3-4 trips on most days. Very little blood. No significant urgency. Still taking Imodium before I hop on a bus to work though.

I’d like to figure out how to get off prednisone and Imodium long term. But in the short term I’m just trying to enjoy a great summer and live with my drug dependencies for now.

I’ll let you know how the prednisone taper goes. Keep me posted on the 30mg results. Best of luck!
Posted 9/4/2018 4:38 PM (GMT 0)

mapesg said...
Barnsbury,

Really sorry you are going downhill. I hope the bump of dosage gets you back on track.

After trying a few things including a short course of antibiotics my dermatologist strongly recommended going on prednisone to try and stop my out of control skin. Sure enough even just hours after taking 20mg I could start to feel relief. A few days later it was under control. Now after a couple weeks of healing I’m back to pretty normal skin. So yeah I’m now in dance with prednisone. Started a slow 2.5mg taper. Just got to 15 today. So far so good. But I strongly suspect my skin goes nuts after I get near 0.

Sucks to be in this prednisone dance. But it’s way better then my skin and guts inflaming massively at the same time. My UC symptoms have been pretty steady through all this. 3-4 trips on most days. Very little blood. No significant urgency. Still taking Imodium before I hop on a bus to work though.

I’d like to figure out how to get off prednisone and Imodium long term. But in the short term I’m just trying to enjoy a great summer and live with my drug dependencies for now.

I’ll let you know how the prednisone taper goes. Keep me posted on the 30mg results. Best of luck!

Hi mapesg

How are you doing? How are your symptoms? How is your pred taper going?

I have been on the 30mg dose on the clinical trial for a few weeks ago, and it has definitely helped. It did take a little while initially to see a difference but now things are better. I wouldnt say I am in complete remission but I am close.

I am having around 3 BMs a day, sometimes 4 depending on what I have eaten. I am also now completely off the steroids. First time in years. My moonface is starting to fade, which I am so happy about. I am totally sick of it. My pred belly is going down too.

I still have urgency but I have had that for the last 20 years. But its mostly in the morning, so I can live with it. So, it took almost a year on the trial for me to get to this stage. But, I was battling on two fronts. My horrible UC flare and also being completely steroid dependent. So, it took me a long time.

I can sleep through the night now too. I do still occasionally get mild stomach pain when I have to pass wind and my BMs are often quite narrow so there must be some inflammation still, but I never see any blood or mucus. And no pain on the toilet anymore. So, its a big improvement.

I am still getting acne, the odd big painful spot, in strange places. Which is due the pred leaving my system, so I guess I am not out of the woods yet. But no more pred withdrawal, which I suffered badly a few months ago.

I hope you are continuing to improve. Look forward to hearing from you.
Posted 9/7/2018 8:35 PM (GMT 0)
Barnsbury,

I tapered all the way off the prednisone for my skin about two weeks ago. So far I’m pretty optimistic my skin isn’t going to go nuts again. Or if it will it’s not happened yet. I have a few small rash things going on but that can happen post prednisone and I’m also on low dose Accutane to try and tame the underlying over active skin cells which also can cause rashes. (Yeah accutane and UC are linked but figure since I have UC already why not try some low dose treatment).

My UC remains decently controlled but can’t call it remission. 3-5 trips usually and the occasional 2 trip days. Almost no urgency at all. Issue right now is blood is more frequent then prior to my last round of prednisone. Prior I could go a few days without noticing any. Then I’d see a bit on wiping here and there. Pretty minor. Now there’s some signs of bleeding at almost every trip.

So I think the prednisone round messed things up a little bit. But while there is some blood with most trips it’s a pretty small amount compared to prior to this trial. If the blood doesn’t relax a bit I may see if they can bump me to 30mg. But right now I’m just happy to be off prednisone and in a pretty good place.

Hope you are holding steady or even getting better. Let’s keep comparing notes. I still think this is a very very promising medication.
Posted 11/3/2018 5:20 PM (GMT 0)
Hi mapesg

Hows it going? How is your UC and symptoms? How long have you been off the pred now? Did the acne stay away?

I am doing really well. I am having usually 2 BMs a day. Some days I have no urgency, other days I do. I also have IBS so it could be that. But, its nowhere near as bad as before. I never see blood or mucus or have any pain either. I thought I had a good remission when I was on the Vedolizumab trial for all those years, but I have to say this drug is even better.

I still cannot believe it. To have my life back after being so sick for so long. I am still getting the odd big red spot in random places and my pred belly has not totally gone yet. My moonface is almost gone, but not completely. Joint pains have gone and I can sleep though the night.

Hope you doing well too, and look forward to hearing from you.
Posted 12/7/2018 3:35 AM (GMT 0)
Barnsbury,

Your last post was super awesome to read! Glad it’s been going well and hope it still is.

Things are pretty decent on my end. Off prednisone for about 3 months now and skin has been really good. Seems pretty clear my skin freak out was related to being on prednisone for such a long time on my previous course and not the study med thankfully.

I’m still having 4 or so trips a day of fairly loose stuff. But notthing too bad. A little blood, but not every time and a lot less then just a few months ago. The antibiotics for my skin freak out seemed like they kicked my bleeding back in but now it feels like I’ve recovered from that.

I was slightly disappointed I never quite got bad enough to get on the higher dose 30mg. But that’s a pretty silly complaint considering how well I’m doing. Urgency is low enough I don’t even bother with Immodium anymore. I didn’t use to step on a bus without taking one. And I’m doing short runs and playing ultimate frisbee again.

This is very livable. I’d be happy to hold where I’m at. But a couple less loose trips a day wouldn’t be a bad goal. Hopefully some healing keeps going.

Keep us posted on how your doing. Hopefully they get this drug out there for more people soon.

Cheers!
Posted 6/13/2019 3:03 AM (GMT 0)
Barnsbury, still doing well? I don’t hit the forums much anymore as I’m hanging in there quite well. Hoping it’s the same for you.

Colonoscopy a few months back had my GI doc call me in remission(ish). No visual inflammation. One small patch of left side inflammation on biopsy. The rest good (though it looks like the aftermath of a rough battle due to pseudopolyps from healing). A small bit of blood still at the end of movements half the time (hopefully mostly due to the pseudopolyps or hemorrhoids). Great control. 3 trips a day.

A few foods can still set me off. So I’m careful on diet and feel I have a bit of IBS from all of this.

I don’t consider myself in true remission. But I don’t care. This is so much better. I have my life back.

Skin mostly better. Oddly I seem to have sun sensitivity that triggers inflammation/rashes that can turn into acne. Seems like the other JAK inhibiter drugs (Xeljanz basically) seem to list some skin side effects and I’m sensitive there already. So not stressing it, but also sorta glad for the first time that I didn’t land on the highest maintenance dose wing of the trial.

Hope you are well!
Posted 10/11/2019 9:11 PM (GMT 0)
Hi Mapesg

How are you doing? It has been a while, though I would check in.

I am doing okay. I have my annual colonoscopy in a couple of months time. Already dreading it. My UC is fairly well controlled. Not much change, which is a good thing. I am still having around 3 BMs a day, sometimes 2, sometimes 4 if I eat bad food. Urgency is still there, as ever. No blood or mucus. It is as good as it gets.

One thing I have had recently, is a terrible sore throat. Had it for a while now. Doesnt really go away. Some days it has gone, then it comes back again. Have you had this? It is annoying. Strange, how it has suddenly come about now.

I hope all is well with you and your skin is still good. Speak soon
Posted 12/4/2019 6:29 PM (GMT 0)
Barnsbury,

Did the sore throat clear up? I haven’t had that by itself but I do feel like colds are hitting me harder then they used to. Just coming off a pretty rough one.

My UC symptoms are still doing well. about 3 trips a day, fairly formed with only a little blood here and there (my GI doc still thinks the blood is mainly from a lot of pseudo polyps in the colon from healing / the aftermath off the inflammation down there).

My skin however is still an on going battle. It seems pretty likely now that I do have a drug reaction that is causing skin inflammation on my face. I’m having another episode of it. Thankfully not as bad as last year but bad enough I’m doing a short round of prednisone (20mg) as that instantly ‘cools’ this face inflammation.

Not sure what the long term plan will be due to the skin reaction but right now the help to my UC is to great to consider stopping the med. This last episode seemed to be triggered by a lot of stress in my life as well. So hopefully if I can keep the stress down I can try and find a balance that keeps the skin from being too crazy.

Hope you are well and that the throat cleared up.
Posted 12/7/2019 4:29 PM (GMT 0)
Hi Mapesg

I am sorry to hear of your skin issues. I hope it all calms down soon.

I am still doing really well. I have 2 or 3 BMs a day. Always formed, and never see any blood or mucus.

I still cannot believe it, even after all this time. It continues to be a miracle drug for me. I had my annual trial colonoscopy recently and there was zero inflammation. Even my pseudo polyps have disappeared, which was really surprising.

Yes, the sore throat cleared up. I do have mouth ulcers occasionally, which I believe are related to the trial drug. Strangely, I do have some minor acne on my face too. Not sure if this related to the drug. But, it is quite minor.
Posted 8/26/2020 4:14 PM (GMT 0)
Hi Mapesg

How are things? Just thought I would check in on you. How is the trial going? And your UC?

Things are fine with me. Clinical Trial visits are a little more tricky since Covid but manageable. I am just glad they we are being allowed to continue. I read thousands of clinical trials have been suspended/cancelled because of the pandemic.

I sometimes have loose BMs which is more likely due to my IBS. Not seen blood in years. Average around 3 BMs a day.

One thing that has sprung up, and it reminded me of your issues, is acne on my face. I now have it as well. It is really strange as I never had this before. Some of the spots are a little painful too. Ive tried changing face creams etc, but no difference. I wonder if it is a side effect. Just weird that it has only surfaced now, years into the trial. I hope it goes away.

Talk soon
Posted 10/4/2020 8:58 PM (GMT 0)
Hi Barnsbury
Sorry for hijacking this thread (which I have followed with interest, especially when I started on xeljanz, it gave me confidence of a response). Anyway I was wondering if you'd be able to share which hospital you're at in the UK? My sister is in
the uk and looking to change hospitals as she has a badly managed case of crohn's (and other autoimmune issues) and i noticed you seem to be in good hands. If you prefer not to share it publicly i can put an email address on my profile for a private message. Thanks a lot.
Posted 10/4/2020 9:42 PM (GMT 0)

poopydoop said...
Hi Barnsbury
Sorry for hijacking this thread (which I have followed with interest, especially when I started on xeljanz, it gave me confidence of a response). Anyway I was wondering if you'd be able to share which hospital you're at in the UK? My sister is in
the uk and looking to change hospitals as she has a badly managed case of crohn's (and other autoimmune issues) and i noticed you seem to be in good hands. If you prefer not to share it publicly i can put an email address on my profile for a private message. Thanks a lot.

Hi Poopydoop, I will email you
Posted 10/4/2020 10:25 PM (GMT 0)
Thank you! My email is temporarily visible
Posted 10/5/2020 8:02 AM (GMT 0)

poopydoop said...
Thank you! My email is temporarily visible

OK
Posted 11/12/2020 7:57 PM (GMT 0)
Barnsbury,

Excellent to hear that you are doing well (aside from the recent acne). I've never totally solved the skin issues. I did recently move to a very low fiber diet (kinda Carnivore diet adjacent but I include some non-meats like Avacado to keep me sane / more well rounded). This does seem to have helped my skin but I'm only a couple weeks in so not sure yet. So far though I'm still stuck using steroid creams on my shoulder / scalp and occasionally my face to keep things at bay. It really is like a inflammation / maybe eczema type thing that can turn into a good breeding ground for Acne; the Acne seem secondary to the underlying inflammation.

Regarding UC I've been sliding downhill a bit in terms of blood. It's still nothing like pre-treatment and I've never been fully blood free (usually a small bit on wiping) but lately I'm starting to see more action in general in terms of blood. Part of why I'm trying the diet tighten up. I'd been steadily adding more things like veg/nuts and that might have been pushed too far. There's talk of bumping me to 30mg from 15mg if I'm not seeing improvement during my next visit/colonoscopy in late Jan. Frequency / urgency are still good by my standards - 2-4 trips a day and no urgency.

All this said, life has been pretty stressful on pretty much every front this fall (I mean lol it's 2020 of course it's stressful). Emergency house repairs, small company I work for trying to navigate the impacts of COVID, a kid going a bit nuts from all the school from home/lockdown and of course all the worldly stresses these days... I think the stress is the real cause of my recent downturn. Trying to deal with it but each week has been throwing something new at me.

Hope the skin clears up and I'll try and update you after my Jan visit.
Posted 11/12/2020 8:04 PM (GMT 0)
I am really sorry to hear that mapesg. Yes, it has been a horrid year for everyone. No wonder things are not as good as could be.

Could you not increase your trial drug dose to 30mg? That is what I am on.

I have my annual colonoscopy tomorrow, just finished the bowel prep. Was awful as usual. Going to head to bed early so forget about the hunger. I will update you on how the scope went.

Hope things improve for you.
Posted 11/12/2020 9:46 PM (GMT 0)
Yes I think I’ll be able to swap to the 30mg. But going to give the diet / stress management a month or two more before I go that route. I’m somewhat hesitant in case the skin issues are directly connected to the medication. Since my skin is just barely under control I’m worried 30 might push it back to crazy town. Of course I can’t say for sure the medication is behind the skin issue but timing implies it is. I will try 30 if I can’t turn the corner myself.
Posted 4/11/2021 10:56 PM (GMT 0)
Barnsbury,
I was wondering are you still doing well on Rinvoq? I just started failing xeljanz and my GI wants me on entyvio or Stelera. I did so well on Xeljanz, as in responded in days, I thought that switching to another Jak inhibitor would be a good idea.
Thanks
Hugo
Posted 4/12/2021 10:07 AM (GMT 0)

Hugo18 said...
Barnsbury,
I was wondering are you still doing well on Rinvoq? I just started failing xeljanz and my GI wants me on entyvio or Stelera. I did so well on Xeljanz, as in responded in days, I thought that switching to another Jak inhibitor would be a good idea.
Thanks
Hugo

Hi Hugo

Sorry to hear of your relapse. Yes, I am still on Rinvoq and still doing really well. Which I am so happy about.
Just wish it was an approved drug now. I am still getting it through the clinical trial.

I think it is definately worth a try.

Best wishes
Posted 4/13/2021 1:36 AM (GMT 0)
Barnsbury,
I wanted to know how your Rinvoq is going. I was doing great on Xeljanz and now am in a large flair. Because xeljanz worked so well for me I thought upadacitinib could really work well.
Thanks for a update.
Hugo18
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