Advice Please - Coming of Pred trying to control my UC with Aza and Predsol Enemas

[Ccass]

Hey Guys

I am pretty new to all of this was diagnosed with UC October 2012 and was put on pred for 7 months I came off them only 3 weeks ago... just wondering if anybody out there could tell me how long it has taken them to shift the moon face and general bloat?

I started 100mg of Azathioprine in January this has now been increased to 125mg as up until a week ago I was still bleeding. My specialist then advised me to try predsol enemas so far so good the bleeding has stopped although the mucus is still there however now I am finding I am almost constipated belly is so bloated and I am really gassy however struggling to to pass a bm until I use an enema on the night... Has anybody else had this problem? I just feel really bloated tummy constantly aches and so does my back... I have read online that maybe I am still inflamed or maybe the enemas are just doing the job too well.. oo:

Any advice would be greatly appreciated I know when first diagnosed it takes quite a while to get sorted!

Thanks

Charlotte

 

[FrancisK7]

Hello Charlotte, welcome to CF!

I'm very surprised you were put on pred for 7 months. That's a bloody long time. Are you from the US, Canada, or other country? Is your GI on the aging side? Typically doctors nowadays don't want to give pred for more than two to three months because of how damaging it is. It's a nasty drug with nasty side effects. What pred dosage were you taking? Man, if I had been on pred for 7 months I'd probably be in jail because I would have killed someone in rage.

In any case, it's good news to see the bleeding has stopped. The presence of mucus and gases indicate you are definitely still flaring. I've never been very gasey myself, but usually when you fall out of remission you start getting bloated and gasey, then the mucus shows up in the stool, and finally blood.

Aza typically takes 3 months to build up in your system and be fully effective. If you still had bleeding after all this time and it took pred enemas to stop the bleeding, the Aza is not doing its job. Raising the dosage is the first step, but unless you are a heavy woman, 125mg is approaching the max dose.

Where are the 5-ASA? Pentasa, Mezavant, Salofalk? Did you take any of these?

Typically, the ladder for UC treatment works like this:

1. 5-ASA meds (anti-inflammatory)
2. Immunosuppressors (Aza,Imuran,6MP)
3. Biologics (Remicade,Humira)
4. Surgery (removal of the affected portion of the bowel).

Steroids like prednisone can be added at any point in the treatment if a flare gets out of hand, but it's usually supplementation, not the main treatment. It used to be the main treatment a long time ago, but not anymore. That's why I asked if your GI was old. Sometimes they just don't keep up.

Typically doctors will work their way from the bottom of the ladder and if that step fails, they'll move on to the next. 5-ASA meds are typically the first thing they give you, so I'm surprised you did not mention it.

Aza does not work for everyone. If 5-ASA failed and Aza didn't even stop the bleeding you should move onto biologics like Remicade. Feel free to ask your doctor about it. If you appear educated about your disease and your treatments, and if he is a good doctor, he should be open to dialog.

I hope this helps you put things together. Feel free to ask any questions you may have!

 

[Ccass]

Hey!

Thanks so much for your reply I'm from Birmingham, UK.

I was originally on 45 mg got down to 30mg had a flare so went back then finally managed to get down to 15mg had another flare and went back up to 30mg then I was just determined to come off them as it was just such a long time of being on a horrid drug. My temper initially was awful however after a month my body got used to it the hardest part was coming off them everyday i would have a mood swing and i am still feeling anxiety now after being off them for 3 weeks! But to be honest I never 100% responded to steroids I had been left waiting so long initially after 2 doctors insisted it was a tummy bug that I think it made the irritation worse.

125mg is the max... I have been on the new dosage now for a week. I was originally on asacol 6 tablets a day but this wasn't working then I tried the salofalk enemas the foam hurt so much it had me in tears but the liquid again didn't work so now I am trying predfoam I have been given an 8 week course.

One main problem in the uk is infliximab isn't licensed for UC so I think unless your at the point where you are ready to have an Op specialists will not recommend it. I have been suffering now since July last year it seems such a long time I am really praying that the increased aza and the enemas will calm it all down. My specialist always says that he is wary of what meds I go on because I am only 24 so he tends to test whatever I am taking for a good few months before looking towards the next step.. I saw adverts for humira while I was on holiday in Cuba however have never come across it in the UK...

There is also not a lot of knowledge about UC here hence the reason for finding this forum... I am due to see my specialist in around 6 weeks and I am hoping I will have settled by this point however if not getting info from here will be great for me when speaking to him

Thanks again for your advice!!

 

[FrancisK7]

Infliximab has been standard in America for UC for some time now. I don't really understand why the UK is lagging behind on this. It's not like the UK is a third world country Hell, I'm from Canada and we're part of the commonwealth, so technically we should have access to the same treatments Humira is a newer biologic. It works like Remicade except there's a human protein in it instead of a mouse's.

There's methotrexate and Low Dose Naltrexone (LDN) as well, but I am not very familiar with them. Hopefully you can discuss it all with your specialist very soon.

If you're in a lot of pain, look into cannabis. If you inhale it by smoking or vaporizing, the pain relief is instantaneous and it also helps treat inflammation, moreso if you consume edibles. I've been flaring for over a year now, asacol and aza have failed. Had it not been for MMJ I would have been hospitalized months ago.