Any Suggestions For Flare Up?

Hi, I’m new to the forum, and this my first post. I’m a 35 year old male who was diagnosed with UC about 8 years ago. Since then, my UC was considered mild to moderate, but seems to be getting worse. I’ve been told my UC comprises my whole colon.

In August, I started to flare up again and I have still not gotten it under control, yet my GI doctor said he wasn’t overly concerned at the results from the colonoscopy that I had done at this time. These are the medications I am currently taking:

Apriso 1.5g
Pantoprazole 40mg
Dicyclomine 20 mg (up to 4x)
Budesonide 9mg
Bupropion XL 300 (for depression)
VSL#3 (tried it, but stopped taking after no change in condition).

At the beginning of my flare up, I started seeing a new doctor. Since I have had a number of different GI doctors in the past due to moving, I noticed that some doctors reccommended certain things (i.e. probiotics, different medications, etc.), while others didn’t. I find the variations in medical advice a bit concerning.

In my present situation, my GI doctor reccommended to step my treatment up to Imuran or Entyvio to get my flare up under control, and hopefully get into remission. For me, this is a turning point in my treatment to a different class of medication that is stronger and more expensive, and has more serious health risks than mesalamine.

My question now is if anyone can suggest trying any other oral medications, enemas, suppositories, probiotics, etc. that may have worked for them that I can discuss with my doctor in order to get my flare up under control before having to step up to Imuran or Entyvio? I want to make sure that everything was done for my flare up before making this change, and I’m not completely sure that my new GI doctor has thought of every possible option given the variations in medical advice that I have received from my GI doctors in the past. Any help is appreciated!

Unfortunately it's common for UC to progress, change, worsen with time. Hopefully the Budesonide has you in check for now. If you have pancolitis, from everything I've read, it's normal to 'graduate' to 6MPs from 5 ASA's, or straight into the biologics. All have side effect profiles that are worth your research or discuss with your GI. Entyvio seems to have less recorded side effects, but has been around shorter. I sympathize with your apprehension to escalate the treatment to these stronger medications...I'm going through the same phase. Good luck and hope you achieve remission soon!

What were the results of your recent colonoscopy? (Done in August?)

If the UC looked moderate, or severe, or moderate with pancolitis, I'd suggest you consider biologics.

If you're flaring but the scope only saw mild inflammation, you can try another mesalamine, as suggested, or consider adding in imuran or 6mp.

Apriso is approved at lower doses for a couple of reasons if I remember right. One, it's only approved for maintenance of remission, not induction of remission (in other words, it won't get you out of a flare by itself once a flare has started, but it has been shown to reduce frequency of flares when one is not currently flaring. Whereas some other mesalamines at higher doses can maintain remission at lower doses and can be used at higher doses to induce remission). Two, it's an extended release formulation that has different pharmacodynamics than other mesalamine formulations (in other words, it can stay in one's system longer so that allows a lower dose to be about as effective as a higher dose of some other mesalamine formulations).

Steroids are to be avoided as much as possible, but sometimes they're necessary to help get a patient into remission. Short term side effects include insomnia, increased appetite, agitation, anxiety, acne, possible weight gain, fluid retention, restlessness, etc. Side effects from frequent or long term use include osteoporosis, thinning skin, high blood pressure, high blood sugar & possible diabetes, psychosis, physical dependency, glaucoma, etc.

I've been in a pretty bad flare for the past 18 months and tried Humira with no luck and then infliximab which helped somewhat, but not enough to get me off pred (still going to bathroom 15 times a day down from 30).

I have moderate pancolitis and although I'd tried melasalazine enemas during this flare, they didn't really help much as I struggled to retain them being so inflamed. Anyway during my last stint in hospital, I had the Iv steroids and then tapered down on pred, but this time once I got to 10mgs, I started nightly Budesonide 2mg foam enemas and a 1g melasalazine suppository every morning & after 18 long months I have finally been able to taper all the way off pred- yey!

Now I'm still on the infliximab so it's possible this has suddenly kicked in, although I'm doubtful as I saw only some improvement in the 9 months leading up to my new enema routine . I'm also worried that once I stop taking the Busonide (I've been on 8 Week course), that things may go south again, but at this point in time I feel better that I have in a very long time. I'm amazed at the difference these enemas/suppositories have made, especially since I have pancolitis and my regular gi didn't have much confidence they would reach far enough to help. My theory is that the hydrocortisone and pred were sufficient to stop the inflammation, and now the enemas are helping to prevent it coming back.

Anyway, I thought I'd share with you in the hope that it may help you too- good luck

I would consider a switch to prednisone if you're dealing with debilitating symptoms. It has a lot of side effects, but it can work quickly and provide relief when you're in a bad place. There were times I was going upwards of 20x a day with pain, cramps, blood... and it got me feeling artificially well nearly over night! I say artificially because pred makes me crazy. I would have WAY too much energy on it, which was usually somewhat welcomed in the beginning since I was so weak and fatigued leading into accepting that it was the answer. As for the Apriso, if you're at the max, and it's not helping, I would consider a switch to another. It may not work, and I wouldn't put all my eggs in that basket, but it's something that's easy enough to try. I also wouldn't discount rectal meds just because you have pancolitis. Even if you got some relief in the rectum, it would be beneficial to your overall condition. Have you had stool tests to check for inflammation and pathogens? If you're not improving, it can always be a pathogen that's not getting treated, but in my case it never was, it was pancolitis rearing it's very ugly head.

https://www.ncbi.nlm.nih.gov/m/pubmed/25724700/

This study showed adding 3g of curcumin to the max dose of both oral and rectal mesalamine was able to induce remission in 50% of patients who did not respond to mesalamine alone.