Hi Spring Sorry to hear of your journey. Sounds awful. But, I am pleased to hear your UC is now in a better place. I am always happy of other people have success with Rinvoq. Please do post back with...
I am happy to help! BTW, it wasn't my GI that suggested the switch to HC. Gastroenterologists are not specialists in this field. I was referred to an Endocrinologist (by my GI) and it was him that...
Dandelion. Sorry to hear of your increase in symptoms. I think I have more experience with Rinvoq than anyone else on this forum. I was the first person to join the trial in the UK, and have been on...
Hi A Carter Sorry to hear of your sides on the drug. It does appear that the sides are mostly minor, so I would try not worry too much about it. I am in remission, and I would much rather have the...
OK, well its good you only had AIN 1. I am 99% sure it was the upadacitinib that is the root cause of my AIN. I had annual scopes for most of the past 20 years and I never had dysplasia before. It...
It was found in several places, mostly in the anal verge (severe) and extending up into the rectum and sigmoid. It is AIN3 and classed as High Grade (HPV 16). I have now had the dose of my drug...
Congrats on your remission. I was extremely unwell with UC for so long until Upadacitinib came along. Like you, I went into a fast remission and have remained that way since 2019. I am thankful. A...
Not sure if already posted. https://www.gastroendonews.com/FDA-Update-and-Product-News/Article/03-22/FDA-Approves-Rinvoq-for-Treatment-of-Ulcerative-Colitis-/66495...
Not sure if this has already been posted, but I just saw this today. It looks promising. Shame the NHS will not be offering it....
I have had UC for more than 20 years but it has been in remission for the last 4. I sporadically get HUGE problems with gas which smells horrific and loose stools, which also smell bad. This isn't UC...
Hi Hugo, how are things? Are you on both Stelara and Rinvoq? How are your UC symptoms?...
Sorry to hear that. I did have a feeling this would be the case, as both drugs target the same enzymes, albeit more selectively. I had an amazing 6 year remission with Stelara, before it stopped...
Good Luck Hugo. I really hope this works for you. Do keep me updated with how things go....
Yes, I had a few. Which is why I knew for sure I got the real drug and not the dummy placebo. On 45mg dose - First few days, huge headache. Worst I have ever experienced. But disappeared by Day 3....
45mg is not an option on the clinical trial. 15mg is the standard dose. If you flare badly, you can be moved to 30mg. No other options. That said, I believe I was on 45mg for the first 8 weeks of the...
Did you get any sides with Xeljanz ?...
Yes, hopefully it will work quickly. Though having a read online, this drug and your last one are fairly similar. Fingers crossed it will get you into remission....
I was on 15mg daily but that dose wasnt enough to get off steroids due to years of dependency. So, I was moved to 30mg and have stayed on that dose. Yes it is approved for RA in the UK....
I saw a change pretty quickly. In a week I saw quite an improvement. By Week 8, the difference was huge....
What dose are you on? And how long was you on it before you flared again?...
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...
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...
OK...
Hi Poopydoop, I will email you...
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...
Every 12 months, so I have had 3 on the trial already. I hate that part. And its always a full colonoscopy that is recorded and sent to the Trial sponsors....
Hi, Yes I am on this trial. Have been for 2 and a half years. I am doing really well on it. Been in remission the whole time. Although getting off the Pred was a bit of a rollercoaster. but fine now....
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...
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...
Nicecup - Thats so awful. I have gum problems now too and ostopaenia. I cannot get rid of my pred belly fat and I have awful stretch marks on my stomach from when I ballooned on Pred. I think 1mg a...
Yes, its Tacrolimus. I was put on that but didnt work for me. I just got awful hand cramps which made doing the simplest tasks impossible. I am glad it worked for you....
Yes I am in the UK. And we always get given Prednisolone...
No, I havent started anything and havent done any weights in a long time. My moonface never quite went away, maybe my body is still getting rid of the pred from my system. I was on it for 2 years...
Thanks for the replies. I am male, Notsosickly, so I think we can rule out time of the month, lol. I havent spoken to the Doctors yet, as its only in the last few days that this happened. I havent...
NiceCupOfTea (I am drinking a nice cup right now, its breakfast time here in the UK) I am sorry to hear of your story. I know exactly what you mean. I was taking more and more steroids for longer...
Sara14 I am not making a direct comparison. I am merely highlighting a common principle that is the same. A drug is a drug. And with repeated use. Your body will need more for the same effect. Ask...
OMG, I saw this post and I shuddered. It was a course of Doxycycline 20 years that ago that sent me into my first ever UC flare. My life has never been the same since....
I was on 125mg AZA for years. I weigh 60kg. It didnt work. I was upped to 150mg and I got neutropaenia. And had to come back down. After initial success in early years, I never had any real...
Hi all This is a new for me and I thought I had seen it all with Pred. I came off steroids last autumn and went through the usual withdrawal. And then things subsided. My moonface diminished, though...
In answer to your question. I would say, without a doubt, YES. Pred does get less effective over time. And believe me, I would know more than most on this forum. Aint nobody who has had more...
I am back! All I can say is I am over the moon. No sign of UC anywhere. Mayo score is 0. That has not happened for almost 20 years. And I have been off the Pred for over 6 months. I still cannot...
Thanks everyone! Well, final tally was 31. Its exhausting. I don't mind the not eating, its the prep thats the worst. Leaving for my scope shortly. Will let you know how it went....
It took me 5 months to get a full response. I was in a horrible flare and steroid dependent though. I would hang in there. Hopefully, it will have an effect in a couple of months or so....
Hi all I am taking Moviprep for colonoscopy tomorrow. I have been almost 30 times to the toilet in the past 4 hours. I always go a lot when taking the prep but this is ridiculous. I dont have much UC...
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...
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...
Oh that is strange. I would have thought the more you take the better the healing! Good to know. Thanks...
Thanks Jo-nock. That is really useful information. I didnt realise so much care had to be taken around these herbs....
I was one of the first people to go onto Entyvio in the UK, I was part of the clinical trials. I had an amazing 7 year remission on it. Then it just stopped working and I had a massive flare. I never...
HJQuin - Are you using Isatis Cooling? How long did it take for you to see an improvement in your UC? Thanks...