Please Help!? 22 year old steroid refractory on Azathioprine since November + just started Flaring??

Hello I'm Stacey a 22 year old dealing with UC for the last 2 years

I haven't posted in a while because I thought UC was behind me now that i am taking my medicine religiously. I was diagnosed at the age of 20 back in 2011 after a massive flare which I stupidly ignored for the best part of half a year because I was embarrassed and self diagnosed as piles and IBS. I became critically ill and when I was forced to confess to my brother who I was living with while at uni, as I couldn't hide locking myself in the toilet all day anymore to I was rushed to A&E. This resulted in a 6 week hospital stay and 2 blood transfusions, weeks and weeks of IV steroids which eventually lead to remission and being put on maintenance meds Azathioprine 125g and mesalazine 2.4g daily. Being young and naive i soon stopped these maintenance meds convincing myself I had been misdiagnosed and remained flare free for over a year.

Back in September 2012, last year, I began a very severe flare which I was firstly given prednisolone 40g, mesalazine 4.8g and Pentasa enemas which I took for 2 months with no success. In November Azathioprine 125g was added however 2 weeks after this and continued deterioration my consultant got me admitted to hospital for nearly 3 weeks. In hospital I was on 100ml of IV steroids, along with 4.8g mesalazine and 125g Azathioprine. This time the IV steroids did NOTHING and after 2.5 weeks on them was given the Infliximab infusion. I quickly reached remission after first infusion however I received another 2 infusions anyway, the last being at the beginning of January 2013 this year.

I have taken the azathioprine ever since the beginning of Novemeber, the infliximab was supposed to fill the GAP where azathioprine takes so long to begin working. I have remained symptom free since my first infliximab infusion in November and believeed the Azthioprine must have kicked in and kept me in remission since my last infliximab infusion in January.

However I have noticed the last few days I am getting flare symptoms. I have a feeling of urgency, a lot of blood in loose stools, mucus. Also I have noticed, (probably well too much information - but I am scared so excuse me), when i looked in a mirror at my back passage when bearing down as if to go for a poo, the inside lining looks very swollen and red.

My question is what to i do now? Have I exhausted the medicines??? why doesn't azathioprine work for me???? I thought it was supposed to be the scary drug that no one wants to take but it will do the job if taken! I feel like I've run out of options now, steroids, mesalazine and now azathioprine don't keep me in remission! What shall I do? I called my consultant and he's on holiday for a week, I've already doubled my mesalazine to 4.8g, shall i up my azathioprine too?

Why don't you just start taking infliximab again? That's probably what put you in remission recently. Many here take that once every 4 - 8 weeks.

Unless there was a reason to stop the infliximab, you should stay on that. But, there's also a drug called Uceris that's been mentioned some on here (it's new). That may help with flares, but it doesn't sound like it's a maintenance med.

So my friend was right, NHS is nose diving...

If they don't give you Remicade, your option is to up your Azathioprine to 2.5mg/kg body weight max, if that helps, very well otherwise you will have to stay on Remicade. You could go on Humira, which is Remicade's cousin.

I don't think Uceris is available in the UK and even if it is available, it is just another steroid to get you out of the flare. You need something maintenance drug (to keep you in remission),

Being from the US,  I am not sure about the NHS issues you face, but there are alot people acheiving control over UC with varying methods. Everything from diet to medication. I've had UC going on 12 years and only recenlty paid attention to diet. The down side is that there is no magic bullet because we all react different.

Of all the therapies I have tried, the one that had the quickest impact was a fecal transplant.  It sounds odd, gross even, but the infusion of good flora into the intensine in such a massive quantity stopped my bleeding and regulated my bowels very noticeably.  Some of the benefits have wained, but I will repeat the procedure to get some gains back. It is most often used to treat c-diff, but has show promise with UC. I was unable to drive to work without making bathroom stops. After the transplant I acutally had some random days with no bowel movements. Sometimes the hard part is finding a doctor to work with you.

Also quick question. I've heard that over time infliximab can stop working as your body builds a resistance.... Is this true?? and in this case is there a next drug up or would I have exhausted all medications, this is quite worrying

Thank you for your reply. Ah I hope the the Humira injections work well for you, steroids are the worst, hope you manage to stay off them!

What diet changes would you advise??

Thanks

I love my food so I haven't radically changed my diet but I have definitely made big changes for me! I also think that diet modification helps you to remain out of flare along with the meds that work for you. I'm going to try write a quick list of things. Every day, I have porridge (made in the microwave with only water) with banana, peppermint tea and I drink 1-3 tbsps of olive oil or Virgin olive oil. They're my three essentials that I find good! Also keep low residue so no browns or whole grains while flaring - as well as no green veg or nuts or seeds or popcorn. I try to do very low gluten Mon-Fri and very low dairy too. I've been mostly avoiding milk. I've read up on it and research suggests it doesn't seem to agree with UC. I've cut out alcohol and cut out caffeine (tea/coffee) and I rarely have sugary sweets. I do still have chocolate every day though! For dinners I have a lot of rice dinners, stir fries etc. I've read that coconut milk is good for us so have been having mild green curries. I've also cut out spice and onion as apparently onion is hard to digest - even for healthy people. I avoid take always and fast foods etc. I used to have Chinese take away and McDs every week before I got sick! I've read up a lot on the SCD and Paleo and the book The Perfect Health Diet is good too. They're just informative so I suppose I'm kind of making my own diet as I go! And I do have cheat days! If the Humira fails, Infliximab will be he next step for me. Keeping positive though. The last two years have been awful!

Thats excellent that you got approved! Great news! We're pretty lucky in Ireland as there are no terms and conditions and paperwork etc. on terms of the biologics stopping working, the hope is that you are on it long enough so that the inflammation is hit hard enough that it goes into remission and then they can wean you off the infusions. it all depends on your process and how you're doing on it. Its not like how steroids trick your body into thinking its healthy and then you crash once you finish them. Humira is another option after Infliximab. And there are new treatments in the works. The risk of cancer is pretty tiny too. Just try to keep your general health well stocked on vitamins and probiotics etc. Its a really trying time but hopefully we'll get into remission and look back on this phase of our lives as a distant memory. "Everyone experiences 'dips' in life that they have to overcome and this is yours." hope you feel better after next infusion