Have to decide - Humira + immunosuppressant or surgery

hi and welcome to HW. i am so sorry you're going through so much. I haven't been in your exact position so i can give you my advise to the best of my ability but of course, take it with a grain of salt because no one knows what is best for you.

If i were in your shoes, I would probably give Humira a try before surgery. It would be good to get the UC controlled before having surgery, even if you decide to go that route. Usually you can't get an appointment to have surgery overnight so you could end up waiting a month or two, and in your case, you haven't even consulted with a surgeon so you have that part of the equation to finish. I definitely think you should familiarize with the surgery options and meet some surgeons. That will set your mind at ease that even if you're facing surgery, there is life beyond surgery and your life definitely isn't over! Actually, you may find that the majority of people who have had surgery wish they had done it sooner. I personally don't want to endure surgery but I am thankful that it's an option if I had tried everything and I was still going to t he bathroom 30x a day with uncontrollable urgency. That is no way to live.

How are your symptoms now? Have you tried any of the lesser drugs like Lialda? Have you ever used steroids to jump start remission?

I can't imagine how tough it must be to have all this happen within approximately a years time. I have been dealing with UC much longer so I feel like I am somewhat comfortable with the options. It's hard to be healthy one day and dealing with something so random and unpredictable the next. I am really sorry.

I am also not sure why your GI didn't mention the new biologics that are available. Humira isn't necessarily the end of the line if you desire to continue pursuing medical options. There is Simponi and Entyvio, both recently approved. Some people are doing clinical trials for drugs coming down the pipeline. You could go that route. You could try alternative treatments such as diet (i have to be honest though, people with severe cases and fast onset don't seem to have much luck with diet from what i've seen). There are off-label treatment type medications such as antidepressants. Please read the resources thread on the top of the forum and keep your chin up, you're not going to die nor is your life over.

Tough decision. Most would choose the drugs over surgery. Not sure what I would do.

All of my Joint Pain went away after I had surgery, I still had the weird pains and neurological stuff when I switched from Remicade to Humira and Simponi. I most likely had anti-bodies to the Remicade but never took the test for it because back then my insurance company wouldn't pay for it ($2500).

Humira and SImponi didn't really work for my UC, Remicade was great for me for many years.

I'd suggest either 6-mp/imuran or Entyvio(vedolizumab) if you want to continue with fighting the UC but I am really happy that I had my colon removed, it's the best that I've felt since I was dx'd with UC.

In the end, you make the decision that is best for you given the information you have at the moment. Could another medication work well without the side effects, possibly. It mostly depends whether you are willing mentally and physically to go through the trial and error process and the multiple or many months that may take to see results. It takes a lot to be ready for surgery as well, as it to has risks, a removal of a large intestine is not a simple surgery and it has a recovery period. Possibly multiple surgeries depending on what the surgeon recommends.

On the medication front there are Simponi and Humira which are similar to Remicade. You developed antibodies to remi, doesn't guarantee you will with the others; you may not if you stay on 6mp/imuran/aza as a precaution. There is also a new medicine Entyvio/Vedolizumab that has an entirely different mechanism of action than the others mentioned. Although Entyvio it's difficult to get at this point as it's new, insurance companies are still adding it to their approved list, and not all GI's have access to it yet. Certainly it is something to ask about.

If you are considering surgery get a surgery consultation referral from your GI. The surgeon typically orders a colonoscopy to see how bad you are, and answers any questions you might have about the process. A consultation is not a commitment for surgery, so you can walk away if desired.

Regardless of what anyone here says it is your call. Some here are against surgery and will try everything under the sun to avoid it. Others have had surgery and wish they had done it sooner, and suffered less with uc. Many others are in the middle. Good luck with your decision it is no easy one...

ks1905 said...

MotherofTeenwithNoUC said...

The first words out of Brandon's mouth when he awoke after surgery were "Mom, I already feel so much better, why did we wait so long to do the surgery?".

I had my colon removed last year and I am getting reconnected next week. I felt the same way as your; instantly I felt so much better and after you realize that then you are like why did I wait so long to have surgery.

lol I said the same thing after waking from surgery. It's amazing how you get used to just trudging through your day with a diseased colon inside you and then once it's gone you realize what it's like to feel well again.

This choice is a deeply personal one and based on your own values and lifestyle. I had UC and chose surgery over the biologics, and honestly, it wasn't that agonizing of a decision for me. My inner voice on the decision was pretty strong and I listened to it. The thought of taking such strong medication that negatively impacted my immune system for the rest of my life did not sit well with me.

I did, however, try an infusion of Remicade to heal up and get in better shape for surgery. I did my first infusion during a two-week hospital for a very severe flare. I knew that had I gotten surgery right away, it probably wouldn't have gone well since I was so weak. Fortunately, the Remicade worked like a charm and within five days I was doing much better and was able to leave the hospital. Unfortunately, I experienced horrendous migrating joint pains within a few days of that infusion. These were not average achy joints. It felt like my bones were being crushed or stabbed and the pains were completely debilitating. I could barely walk and they kept me up at night crying in agony. My doctors wouldn't confirm it was from Remicade, but I had a very strong feeling that it was. It started right after I began the drug and I had never had any problems with joint pain before. Plus I found countless stories of people on Remicade experiencing similar joint pains on the internet. Doctors just don't seem to know about this side effect (even though joint pain is listed on the actual Remicade website as a side effect.) I did get tested for drug-induced lupus but that came back negative. Anyway, I canceled my 2nd infusion and opted to try no other biologics. I scheduled a surgery consult and chose to get a permanent ileostomy (I didn't want a j-pouch because I thought the permanent ileo was a better option for my lifestyle.) Now I am loving life free of UC symptoms and pain. The joint pains gradually went away about a month after the infusion and never came back. This all happened about 3.5 years ago.

Best wishes wishes with your decision!