Shifting meds from Mesalamine to Humira: Need help please!

Hello all,

I am a regular reader/seldom poster of this forum. Really appreciate the wealth of info here and would so appreciate some perspective around making the likely switch from mesalamine to biologic to treat my persistent newly minted left-sided UC.

As is often the case, my 2015 proctitis dx has steadily progressed to left-sided UC and the flare frequency/intensity has become increasingly difficult to manage with mesalamine alone. Following a recent scope (March, 2020), my GI had me do a course of budesonide tablets (zero help) and then a subsequent month of prednisone taper (first time), which nearly eliminated symptoms. It was fun while it lasted but I am regrettably back to flaring and at the point of the dreaded switch to biologics.

I was just approved for Humira and at this point the ball is in my court to decide what to do... What I'd appreciate is any personal accounts with Humira and any general words of clarity to help me navigate this incredible ambivalence I am feeling around making this change. My greatest concern is the sense that once I make the change, there's no going back and then I am on the biologic train for the rest of my life. I know it's such a case-by-case experience for folks, but it would be helpful to just have some fresh perspective outside my current support-system.

Thank you kindly!

Hi Sara - Other than something like upping my mesalamine treatment to nightly enemas + morning suppository (which I've not had much success with) and maybe a stricter diet regiment (food map maybe?), my options seem somewhat limited. I so see a therapist once a week and have had some success managing general anxiety with mindfulness practice and regular exercise. My UC has just been really stubborn and am not sure what else I have at my disposal other than biologic at this point. Unfortunately, It seems I am at the mercy of the so-called "step therapy" approach largely governed by insurance, which point to Humira as the first option.

Am I forgetting something?

I feel your pain! I fought so hard against biologics for the same reasons you stated. Gave all the supplements and diets the “good ole college try” but after a year of waffling on and off prednisone my GI stated he was afraid I was going to lose my colon and my best option in his opinion was entyvio. I really trusted him and turned out he was right. I’ve been happily in remission for 4 years.

It’s so nice to not worry about going out and about — no cramping or toilet runs. It’s like life before UC. I was lucky that I’d just gone on Medicare when I was diagnosed and didn’t have to try whatever medication insurance wanted me to. So I have no advice on humira. I will say ( and I’ve seen it said here a lot from people who gained remission from biologics) that it turns out my worries were misfounded .

An advantage to humira is you can self inject at home. I have to go for infusions at the hospital every 8 weeks but they are only 30 minutes and it hasn’t interfered with my life at all.

New drugs are coming out all the time so the worry about using up all your drug options doesn’t really apply anymore.

Keep us posted and good luck!

I'm biased because none of the biologics worked for me and some of them, like Humira, caused awful side effects. So, I personally did everything I could to avoid biologics for as long as I could (max oral and rectal mesalamine only for many years and then 1-2 courses of pred a year for many more years). The only biologic that worked for me at all was Remicade but that only worked for 9 weeks, so it was not even worth all the stress, money and hassle it took for just 9 weeks of relief! Hopefully you have better luck with biologics than I did if you decide to try them.

Sara - That sounds rough and totally understandable that you would want to avoid biologics given the bad reaction to Humira. I see that you recently started Xeljanz. I hope that you find some relief with that!

Personally, I have been wary about staying on mesalamine because it has clearly proven over the past 6 years it have lost its ability to keep my inflammation under control and my symptoms have steadily gotten worse. Plus, the idea of using Pred more often sounds problematic on many levels. I'm am trying to remain optimistic about biologics and feel as though it's inevitable at this point that I make the jump, despite my concerns. Guess you never know until you try and I've gotten to the point where anecdotal info only provides so much to go off of. I'm worried for sure but my current meds/health status is no longer sustainable.

Dandelion77 said...
Sara - That sounds rough and totally understandable that you would want to avoid biologics given the bad reaction to Humira. I see that you recently started Xeljanz. I hope that you find some relief with that!

Personally, I have been wary about staying on mesalamine because it has clearly proven over the past 6 years it have lost its ability to keep my inflammation under control and my symptoms have steadily gotten worse. Plus, the idea of using Pred more often sounds problematic on many levels. I'm am trying to remain optimistic about biologics and feel as though it's inevitable at this point that I make the jump, despite my concerns. Guess you never know until you try and I've gotten to the point where anecdotal info only provides so much to go off of. I'm worried for sure but my current meds/health status is no longer sustainable.

Thanks. I've tried every single biologic and none have worked. So they may or may not work for you. They don't have very high efficacy rates and you have to wait months to see if they will even work so it can turn into a lot of misery and a huge waste of time.

Dandelion77, for me Humira worked reasonably well for 5 years after Aza and 6MP failed. It gave me my energy and life back and I'll always be grateful for that time. I just wish it had continued to work for the rest of my life as it suited my lifestyle to inject once a fortnight and get on with my life.

Sadly Humira started to fail for me about 6 months ago so I switched to Xeljanz 7 weeks ago, and today I handed back my spare injections to the IBD nurse. I felt sad to let it go - end of an era.

To my knowledge the only side effect I had from Humira was my hair regenerating quickly. I thought at first it was hair loss but realised it was just falling out and regrowing at a faster rate leaving wisps of baby hair. I didn't have any hair thinning.

In contrast to Aza / 6MP I didn't catch more frequent colds and viruses while on Humira, and I didn't feel tired anymore. Like many people I was very reluctant to move onto 'harder drugs' and would worry about the side effects, but after living half a life for over 10 years due to pancolitis I just wanted to live again and wasn't ready for surgery so gave Humira a go.

Good luck with whatever decision you make, and remember if you give Humira a try and it's not right for you you don't have to stay on it.

UCyousee said...
Dandelion77, for me Humira worked reasonably well for 5 years after Aza and 6MP failed. It gave me my energy and life back and I'll always be grateful for that time. I just wish it had continued to work for the rest of my life as it suited my lifestyle to inject once a fortnight and get on with my life.

Sadly Humira started to fail for me about 6 months ago so I switched to Xeljanz 7 weeks ago, and today I handed back my spare injections to the IBD nurse. I felt sad to let it go - end of an era.

To my knowledge the only side effect I had from Humira was my hair regenerating quickly. I thought at first it was hair loss but realised it was just falling out and regrowing at a faster rate leaving wisps of baby hair. I didn't have any hair thinning.

In contrast to Aza / 6MP I didn't catch more frequent colds and viruses while on Humira, and I didn't feel tired anymore. Like many people I was very reluctant to move onto 'harder drugs' and would worry about the side effects, but after living half a life for over 10 years due to pancolitis I just wanted to live again and wasn't ready for surgery so gave Humira a go.

Good luck with whatever decision you make, and remember if you give Humira a try and it's not right for you you don't have to stay on it.

Hi UCyousee,

Thank you for sharing your experience with Humira. On the one hand, its encouraging to know you had such a good run but also a little disheartening its lost its ability to maintain the quality of life you once had with it. I can imagine having to hand over the extra pens and make the change was difficult. I truly hope you find relief and good health with Xeljanz!

In some ways, my experience has taken a similar trajectory... only it's going from 5-asa treatment to a biologic. One of the most challenging aspects of the process for me has been accepting mesalamine no longer works and navigating all the (mostly negative) narratives swirling around in my head about "harder drugs". In the end, I guess it really comes down to establishing a trusting relationship with a GI and making as well informed a decision as I can!

Thanks again for your input and perspective.

Wishing you wellness!

I would call my insurance company & find out what biologics they cover. This cuts down waiting on the staff doing this & you can discuss with the dr the ones on your list.

The companies that offer assistance for drugs not covered, if it's an infusion drug that 20k I've seen often does not go very far by the time the other costs are factored in. This happened to a member in the crohns forum, 1 infusion, then went to the pens & had a total of 2 pens & the 20k was used up.

Find out what is covered under your insurance & go from there. Don't beat yourself up for having to go to the next level. A lot of people that post here are ones in trouble looking for answers, the ones doing well are living their life as they should be & it includes people on biologics.

Good luck.

I have had no major issues with Humira. I bruise easily but my bloodwork is always good. I started off injecting every other week but eventually needed to do once a week (I'll be getting scoped on Monday so we'll see if it has done its job). It does seem to keep things under control. And ever since they came out with the citrate-free version, it hardly pinches at all most of the time.

By some miracle I remembered to come back and give you an update! I had my scope today and, for the first time ever, the result was "no active colitis." So there's an encouraging story for you. As I mentioned, I'm on it weekly, not every other week, so that might be making the difference. Last time I got scoped there was still a bit of inflammation lower down. At that time I was injecting every other week.

I was diagnosed with left-sided moderate to severe UC in March. The initial prescription was Mesalamine. Before I took any, my GI called me and told me to hold off on taking it. Seems he’d read an MRI report from John’s Hopkins about my having pancreatic divisum. Pancreatic divisum is a birth defect where the two pancreatic ducts do not fuse into one common duct. This doesn’t bother me much but it does cause pancreatic enzymes to “back up” some which can cause some high readings in my pancreatic enzyme readings from time to time. I’ve also experienced one bought of pancreatitis in the past. My GI’s take was that Mesalamine can sometimes cause pancreatitis and he wanted to avoid that.

I travel quite a bit so he wanted something convenient for me and thought Humira would be a good choice.

Like you, I was extremely ambivalent (if not down right fearful) of this drug. However, I do trust my GI (about as much as I can trust a doctor) and so I went with it. The “loading dose” was 240 mg. This caused me to get an upper respiratory infection that lasted 10 days. (I should mention I also got a shot of cortisone for an unrelated joint problem during this time. I’ve since learned, those also lower the immune system. I believe it was a combination of the two, fwiw). Anyway…

I have been on a maintenance does of 40mg every two weeks (again with strong ambivalence at first). However, I must say, my UC symptoms seems to have cleared up (once he got my constipation out of the way). Now…although I do still have some reservations about this drug, I am finding myself taking it with more and more confidence. I see my GI today. My feeling is he will keep me on it since it seems to be working (pretty good actually). Although I will complain lol about the side effect of a lowered libido. I can also tend to cough for a few days after an injection.

And you’re right about the changed formation that rids the shot site of pain. I’ve experienced zero pain from eith the shot or it’s after-effects. (It’s not really a shot in sense of of a long needled being pushed into you. It’s subcutaneous. Like a TB test).

And remember, it doesn’t “do away” with one’s immune system. But, it does lower it somewhat. I take comfort in knowing that.

Good luck to you in whatever your ultimate decision may be.

Be cool man.

island time said...
I was diagnosed with left-sided moderate to severe UC in March. The initial prescription was Mesalamine. Before I took any, my GI called me and told me to hold off on taking it. Seems he’d read an MRI report from John’s Hopkins about my having pancreatic divisum. Pancreatic divisum is a birth defect where the two pancreatic ducts do not fuse into one common duct. This doesn’t bother me much but it does cause pancreatic enzymes to “back up” some which can cause some high readings in my pancreatic enzyme readings from time to time. I’ve also experienced one bought of pancreatitis in the past. My GI’s take was that Mesalamine can sometimes cause pancreatitis and he wanted to avoid that.

I travel quite a bit so he wanted something convenient for me and thought Humira would be a good choice.

Like you, I was extremely ambivalent (if not down right fearful) of this drug. However, I do trust my GI (about as much as I can trust a doctor) and so I went with it. The “loading dose” was 240 mg. This caused me to get an upper respiratory infection that lasted 10 days. (I should mention I also got a shot of cortisone for an unrelated joint problem during this time. I’ve since learned, those also lower the immune system. I believe it was a combination of the two, fwiw). Anyway…

I have been on a maintenance does of 40mg every two weeks (again with strong ambivalence at first). However, I must say, my UC symptoms seems to have cleared up (once he got my constipation out of the way). Now…although I do still have some reservations about this drug, I am finding myself taking it with more and more confidence. I see my GI today. My feeling is he will keep me on it since it seems to be working (pretty good actually). Although I will complain lol about the side effect of a lowered libido. I can also tend to cough for a few days after an injection.

And you’re right about the changed formation that rids the shot site of pain. I’ve experienced zero pain from eith the shot or it’s after-effects. (It’s not really a shot in sense of of a long needled being pushed into you. It’s subcutaneous. Like a TB test).

And remember, it doesn’t “do away” with one’s immune system. But, it does lower it somewhat. I take comfort in knowing that.

Good luck to you in whatever your ultimate decision may be.

Be cool man.

Greetings and thank you for sharing your experience, island time (great handle, btw!). It sounds like you are in good hands with your GI and you seem to be in as good a spot with your UC as can be. Bummer about the libido and initial cough though Guess it can be worse!

As mentioned in this thread, I'm working with a new GI (first appointment is tomorrow) because my current doc of the last 6+ years has kinda been phoning it in, so I've never really felt I could trust him fully. I set up a consult/second opinion with the new one a while back as I was first starting to consider biologics and she was very warm and open, so definitely looking forward being in the care of somebody who seems engaged, where actual trust can be established. One of the most important lesson I've learned with UC is you have to be your own best advocate!

I remain hopeful and am very appreciative for you and everyone else's input as I navigate next steps.

Wishing you continued improvement with Humira.