Recently diagnosed with UC, Pred advice.

Hi everybody,

Last month I starting waking up with lower abdo pain that went away as soon as I went to the loo, over the next 3 weeks this progressed to 15-20 trips a day with lots of blood and urgency. I was admitted to hospital for 3 days and given a sigmoidoscopy which revealed ulcerative colitis.

I was prescribed 4.8 mg of Ozacol and 40mg of prednisone which was to be tapered down weekly by 5mg.

The first day I took the meds my BM's were reduced to x3 a day, by the 7th day I was going once a day upon waking which is obviously a great improvement. I'm now on the 10th day and although I'm only going once a day their is still blood, D and no formed stool at all.

Although I'm now on the 10th day I'm still taking the 40mg of Pred and haven't took my GI's advice to taper 5mg weekly, I'm just worried that if 40mg hasn't stopped the blood then how is 35mg going to?

If anybody can offer any advice on what I should do next it would be much appreciated, thanks in advance.

I second soy's advice about starting the taper, but also to call your Gil's office and let them know what is going on. Rowasa is unpleasant, but is a great way to treat UC. In my last flare, bleeding was slow to stop.
The only time I took pred, I started at 30 mg for 3 weeks, then tapered 5 mg every 7-10 days until I hit 10. After that the taper was 3 weeks long to go from 10-0. I was also using rowasa nightly. Hope this helps, it sounds like you are making great progress.

Hi UC55, I am in the UK, Yorkshire. I paid to see a private consultant when I was extremely ill in 2013 and could not get near an NHS consultant and he was the first person to tell me about them. They were then prescribed by the NHS once it was apparent I had heard of them. I think it is because of the cost but once they are prescribed to you, you can always get them. Perhaps say you have spoken to another UC patient who is prescribed Salofalk 2g enema and it helped them achieve remission when they had 15/20 BMs a day. It took about a month to see a difference but definitely helped. You can also get Salofalk suppositories which I think are better than the other brands but the best brand will be trial and error. I understand your frustrations about the NHS. You could google whether the NHS consultants at your hospital do private work if you are having long delays between appointments and want longer to discuss your options. You don't need to drop out the NHS lists if you do this.

Hi UC55, I used to live in Manchester so I know Lancashire well! Yes I told the NHS doctor that the private doctor recommended them and asked him for a prescription so that I didn't have to pay privately for prescriptions. The GPs don't like to do anything unless recommended by the IBD team but the nurses on the helpline can fax your GP with a request that you are given the prescription and the GP can ring the IBD team but best to do it the first way around. I did, but my first main flare was a nightmare because I had been diagnosed with just proctitis 5 years earlier just because of bleeding and no real other symptoms. When I contacted the hospital for help in 2013 that they would not listen to me that my symptoms had changed and it spread from proctitis to subtotal colitis which is 3/4 of your colon. The enemas were the only thing that helped in addition to pentasa tablets I was taking at the time. It was a slow recovery and I most probably should have been on steroids as well as enemas, but the enemas really helped thanks to the private consultant. The enemas are really good for stopping the bleeding and slowing down the frequency. Are you managing to eat anything? It sounds like this is your first main flare and if it's any consolation, a lot of people find the first flare to be the worst. My second flare was half as bad as my first and my current flare (touch wood) is half as bad as the second one.

Just for info, my last hospital in the UK was RLI (used to live in Lake District). There are certainly good individuals there but as a whole I would not recommend that hospital... CQC was far from complimentary.

That said it is easy to contact the consultant through their secretary and a response is usually pretty speedy... And finances have never (in my experience) restricted their prescribing. (Personally found this also the case in previous excellent hospital in London).

Appreciate Lancashire is a large county and you may well be going elsewhere... My advice is pick carefully. Good luck.

Morning UC555. Yes, the NHS is a bit of a pain...in the a*s!

Down here in Shropshire its no better. I was diagnosed a few weeks ago with left side UC and was prescribed with Predisone 20mg enema, i had one day with a bad flare, 20 bm for one day, the rest of the days were 4 all at the same time everyday. First morning after taking the enema i had a perfect BM, worked wonders. Been on it for 4 weeks now and 95% of the time i go once a day and its fine, but i have had a bit of blood and a very small amount of mucous. i'm off to Mexico tomorrow and am taking my enema with me, hopefully that will see me through as i have a consultant appointment the day after i come back.

Everybody gets prednisone's nuisance side effects, they usually kick in after several weeks on it. Not sure starting a taper is the trigger. I'm on 20mgs of pred and tomorrow's the two week mark. I've been noticing the dreaded insatiable pred hunger, that I'm easily angered (roid-rage), having trouble falling asleep (pred insomnia), a faster resting heart rate, and an increase in acne is noticeable. Oh the joys of the devil's tic tacs lol. Seeing my gastroenterologist tomorrow and all flare symptoms are gone, so *fingers crossed* for a quick taper.

First of all, UC555, welcome to the forum. I'm sorry your healthcare providers are so unhelpful; that doesn't help your stress level and that can certainly contribute to flaring. The thing is that UC ALWAYS starts at the rectum and advances up. You may have symptoms throughout or just in the end when you're diagnosed, but flares always start in the rectum. Some of us are lucky enough not to have bad symptoms from rectal ulcerations, so we don't pick up on the flare as early as others may.

Many times doctors are slow to prescribe rectal medications because so many patients are not compliant with using them. I'm sure in a national health service in any country there are guidelines for Mesalamine (Salofalk) enemas because they're fairly expensive.

I hope you'll be able to see your consultant soon and have this discussion with him or her. It sounds like your IBD nurse isn't going to be much of an ally for you, and this is a shame. Gook luck.

I think it's good to follow the doctor's advice to a certain extent. It's good to work with a physician that you feel comfortable with and trust. At the same time, you're the only one who knows how you feel. You have to remember, with prednisone, often when you taper, you may have an increase in symptoms, sometimes it's brief rockiness, just from reducing the dose. It's important to remember that a slight increase in symptoms for one or two days isn't necessarily a relapse. You can't stay on steroids forever, at a certain point, it makes sense to push forward with the taper - but you also have to consider that you don't want to taper too quickly or taper when you're not ready. it's a difficult situation. In my personal case, I was always better from 40mg within a few days. Better to the point that I could taper down in 5 or 10mg increments until I got below 20mg. Usually after 15mg, things became much less stable, and I had to go at very small increments, especially after 10mg. To make matters worse, it's emotionally draining being on steroids. Always thinking the worst. Not sleeping. Gaining weight. My confidence was at an alltime low. Unlike you, I had AWFUL acne, marks that still haven't 100% cleared... It was a nightmare for me. After the last course, I said NO MORE.

The combination of nightly rowasa and 20 mgs prednisone removed all flare symptoms in less than week, "wicked fast" as we say here in the northeast lol. Other than a few annoying pred side effects that I'm dealing with, I'm pretty much back to my normal. And even those pred effects I am managing much better this time. I consider myself to be extremely lucky/fortunate. Which brings me to the appointment which also went well, I got to see the results of the barrage of tests done at the inception of my flare/blip. Phew, no antibodies to remicade (my biggest worry since recently flaring and having had discontinued 6mp in January 2016). My remicade minimum concentration levels was 5.8. Slightly raised CRP 0.48 (before I was consistently 0.01), WBC and all of the normal signs of a smallish flare. I caught the flare early this time, before the sluices opened up and the unleashed a true flare bloodbath and torrent of pain and misery.

Going forward, we're moving the remicade infusions up to 6 weeks from 8 weeks and keeping everything at 5mgs/kg. I'm slowly tapering the pred. I'm keeping with nightly rowasa for at minimum of a few more months. Back to the usual wait and see, get lower on pred and hope nothing flare-like reappears. Kara, don't you wish you still had your pesky large intestine, UC, and all of the uncertainty it brings? I can be a donor lol.

Notsosicklygirl- hi, after taking the advice given on here I started my taper on Monday, today is my fourth day at 35mg and so far so good. Uc symptoms seem to be getting a little better each day and I'm tolerating more foods now.
Sorry to hear about your pred experiences, sounds awful. I'm still on edge about when the pred side effects are going to hit, hopefully I'll be 1 of the lucky 1's that doesn't get any but I very much doubt it. How many Pred tapers did you do if you don't mind me asking?

UC555 said...
Just got off the phone to my Ibd nurse about the enemas and she wasn't much help at all, she told me "they won't do anything for you because yours isnt at the bottom much" when I asked what sort of UC I had she said "just normal ulcerative colitis" I then asked so where is the inflammation and she said "it's just in most of the large bowel, stop reading on the internet because everybody is different, just trust us" I then gave up.

Maybe getting a private GI appointment is the way forward for me on that front.

Really unhelpful attitude that; I'm sorry you've got what appears to be a bad IBD nurse. I'm lucky with my current medical team, but I've had a few shockers in the past.

It might be worth seeking a private appointment, but private consultants aren't actually any better than NHS ones: that's 'cos most private consultants also work as NHS ones and vice versa. If you can hold on for 5 weeks, wait to see if your consultant is any more helpful and forthcoming than your IBD nurse. If you lived in my area, I'd recommend my consultant but unfortunately you're nowhere near.

Notsosicklygirl- sounds like a nightmare does that. I'm really worried about the symptoms coming back as the pred tapers, really don't want to constantly be on drugs. I definitely think you went the best option (surgery) in the end.

nicecupoftea- I did notice that, they seem to do 3/4 days for NHS and 1/2 days privately. The GI I did see at the hospital seemed a very nice man and knowledgable. With things heading in the right direction at the minute I think I'm just going to hold out until I've seen him again.

Quincy- I managed to get a copy of the colonoscopy report today but apparently the biopsies aren't back yet even though it was 2 weeks ago. Not sure how long these usually take. What could these potentially show up? Is there a chance that I might not even have uc?