Humira put me in the hospital

I was diagnosed with UC 4 years ago, put on Lialda and was fine. Then at the end of May I had my first flare. I had no idea what flare symptoms were because I had never had one. I was going to the bathroom 16 times a day and I lost 5 pounds or more. Anyway, my doctor put me in the hospital with IV fluids and prednisone to calm things down and said that he didn't think my Lialda was working anymore and that I should switch to a biologic. I really didn't want to take Humira because of all of the side effects, but I was also scared not to because I didn't want to be sick. A little over a month ago I started the injections. Two weeks ago (after my 4 starter shots, 2 additional shots and then my 1 normal shot) I woke up with a terrible pain in my back on my left side. It felt almost like a kidney stone, which I've had before, and I wasn't able to go to work. That night I ended up going to the ER because the pain was so excruciating. They did a cat scan and found nothing wrong except for mild inflammation due to my UC, and they sent me home. The pain didn't stop though. Not until my third trip to the ER where they finally admitted me. I had a UTI (which I've never had in my life, I'm 27), the excruciating back pain and my lipase enzymes were through the roof though I didn't have pancreatitis, thank god. I was on morphine and when that didn't work oxycodone. They sent me home after a few days and we all figured it must be the Humira, it was the only new thing I had taken and it does have all of those side effects. My doctor was stumped though because he had never seen someone with that particular reaction and 3 separate side effects all together. So no more biologics for me. He said the next step would be immunomodulators but I refused. The side effects are somewhat similar and I don't like the idea of suppressing my immune system. So I told him I only ever had that one flare in four years on Lialda and that I wanted to try it again. He said he doesn't think it will work but I can try it. He also prescribed VSL #3 packets, he said sometimes the VSL with the Lialda could be the right combination. I'm currently back on prednisone, just tapered to 30mg, because all the meds from the hospital messed up my stomach. I'm still having diarrhea but not as urgent, not as much and it's not bloody or anything. I do worry though because the mesalamines are all I have. I mean I hope they come out with something new, but who knows? I'm afraid I'll need surgery and have a pouch coming from my stomach. As a 27 year old female I think, who will want to date someone like that? Or even someone with this disease? I feel depressed and hopeless, can anyone shed some light??? Thank you

Entyvio also has bad side effects, I'd rather not suppress my immune system. Anyone else??

Most people do not suffer terrible side effects from UC meds. I have been on remicade, simponi, entyvio, methotrexate, a variety of 5ASAs and 6mp. The worst side effects i've ever faced were, without a doubt, from prednisone. I got very sick from being on too many drugs as well and I finally opted for surgery. While it's not a perfect solution, it is an option for people who can't tolerate medication. I hope you have luck with Lialda + VSL#3. If I were in your shoes, I would be looking for other options just in case it doesn't work. Usually things don't go backwards, they didn't for me anyway. Lialda was no longer effective at treating my colitis and after that point, it never got me into remission again. Of course, that is just my story, other people may have different, and it may be different for you but it's better to stay ahead. I'd rather not suppress my immune system, but more than that, i'd rather not live my life worried about being near a toilet 24/7. Long-term active inflammation can also lead to cancer, so if it comes to suppressing my immune system or having a colon that is a ticking time bomb, I personally would suppress.

I was given rectal meds a week ago but can't really take them yet because of my urgency to use the bathroom. I honestly feel like these drugs are worse than the actual disease. I only have mild colitis so maybe it's not as bad. I only ever had one flare in the four years I've had colitis, is that really reason to believe my meds stopped working?

Colitiscopeeyes said...
I was given rectal meds a week ago but can't really take them yet because of my urgency to use the bathroom. I honestly feel like these drugs are worse than the actual disease. I only have mild colitis so maybe it's not as bad. I only ever had one flare in the four years I've had colitis, is that really reason to believe my meds stopped working?

No one can really tell you that for sure... I guess you know the meds stopped working if you're taking them religiously and your flare up persists or if you increase the dose and get no relief or worse. At that point, you can try attacking heavily with increased doses and rectals but it may or may not help. It is worth a try. have you tried cortifoam? I find that is easy to retain compared to other rectal meds. Mild inflammation should really be treatable with the medical options available.

Have you had stool tests? perhaps you have a bug that is complicating things... How do you know it's mild? did you have a scope recently?

You need to try the rectal meds even if you can't retain them for very long. In my experience, you will eventually see results and be able to hold them in.

In my opinion.... I am with everyone here.

First, you HAVE to take the Lialda and what we call the 5-ASA drugs like this ALL the time, for the rest of your life. I have been on them since they were developed (30+ years ago) to decrease the inflammation that causes cancer...whether you think it is working or not, they are. Even when you are in remission, they are helping. I have had UC for 40+ years and I have had no cancer/needed surgery or even pre-cancerous cells since I have taken it religiously.

It is a case where you need to find the right combo of medicines too like they have all said. The rectal medicines are what will help you the MOST in controlling your urgencies and frequent bathroom trips. I know it's hard to hold the enemas in, I have been there many times. Try using it a bit at a time. My trick was I learned to read a book...many chapters a a time in the crapper....seriously, like for an hour...lying there on my left side on a towel (hey, the floor was cold)...dispensing those enemas one small drop at a time so as not to trigger a spasm that would send me into having to poop it out.

I am a HUGE proponent of Canasa suppositories...it treats the last 5-10 cm of your rectum (proctitis) where a lot of us have a problem. The retention enemas pass right by that spot and the Canasa is a suppository that is way less irritating and hit that one area where the stool hits and causes those IHAVETOGORIGHTNOW incidents. You also don't get the urge to expel it like the enemas. If this is your problem, you may want to ask your doc about that...it saved me for years until I stared Simponi.

Hope this helps.....!