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Decision between Imuran or Entyvio

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Posted 12/25/2019 5:54 PM (GMT -7)
Hi all, back after a year ‘off’! Quick background and then wanted to share two lessons I took from this which might be helpful to others. After a lot of thought, I finally succumbed to biologics and started Humira in May 2018. I’d been suffering from a long term, though mild, flare which was no longer controlled by Asacol alone. I went on Prednisone and Budesonide for about 4 months (took Pred for a while, then switched to Bud). Anyway, Humira helped a lot with the flare and seemed to put me in remission (no re-scope to confirm). BUT I ended up with Humira-induced Psoriasis and had to stop about 4 months into it. Shame, but that’s one of the fairly common side-effects of Humira. Since stopping, I maintained a daily dose of Asacol which sustained me until Aug’19 when I had to pick up on Budesonide again. First 3 mg’s for a couple of months, then up to 9mgs since.

Lesson 1: I did not switch the focus of my treatment away from UC towards Psoriasis. Though both are related illnesses, and most people switch over to something like Stellara to address the Psoriasis AND benefit the UC. Instead, I began heavy doses of some supplements and remained patient with the Psoriasis to see if it would subside. Luckily, it did…ever so slowly, and with a couple of re-flares in between. I reached out to a few folks on the Psoriasis Forum here in HealingWell and realized a couple had experienced Humira Psoriasis dissipating after a period of time. I am under no delusion this is gone forever, but nice not to be dealing with double issues at the same time. For any who experience Humira Psoriasis, you may want to wait before switching to PSO-primarily drugs.

Lesson 2: I requested from my doctor a bone density scan as part of my annual physical a month ago. The results came back horrible. I am two standard deviations below where I should be. That’s a lot and in ‘red zone’ territory. The suspect culprit of course is steroids. I will be seeing an endocrinologist to treat this with a specific protocol of supplements and exercise. I understand this is reversible with time. Reading a trail posted by Sara14, I realize how prominent this and how it can cause stress fracture from certain movements or minor bumps. Anyone who is or has been on longish stretches of steroids should get this scan done. Better to know and treat it before any stress fractures. It’s easy and quick…and requires no prep! 

Next up for me is a decision between Imuran or Entyvio. Taking the holiday to contemplate which direction and weigh the odds. This forum is of course hugely helpful for that, and I’m reading in others as well.

I guess the mantra is ‘it could always be worse’…so onwards. Wishing you all a Merry Christmas and hope you manage some time and thoughts away from what we deal with mentally and physically each day. I plan to spend time with my kids who have just recently learned who the true Santa is. Sad to see that stage behind them, but the upshot is my wife and I finally get the credit for all the goodies under the tree!!
Posted 12/26/2019 5:24 AM (GMT -7)
So sorry to hear this! My daughter developed Psoriasis this Fall. It was bad & was diagnosed officially by a Dermatologist. She has had UC since 2007 & has been on Remicade since 2017 & has LOVED it & done awesome. She told me on Christmas it really still is bad on her chest & back (she is 29 yrs old) & her right hand has been very crampy. Hoping it is not arthritis. She really wants to stay on Remicade,.Her GI is not sure if Psoriasis is induced or not. She's trying to hang in there & has a good attitude. What are the supplements you were talking about?
Posted 12/26/2019 6:27 AM (GMT -7)
Welcome back but sorry to hear you're having troubles. I have mild osteopenia from steroids.

Are you absolutely certain that the Psoriasis was humira-induced? Often we get Psoriasis as a second auto-immune condition. Anything medication-induced is gone after discontinuation and it sounds like yours lingered thereafter, making me think it's a secondary condition.

Imuran or Entyvio would be good solutions. I'm on 6mp (a sister medication to imuran) and remicade (a sister medication to humira) together.
Posted 12/26/2019 8:22 AM (GMT -7)
Hi Hard Evidence, my first outbreak of psoriasis happened while on Remicade. It was on my hands & soles of my feet. They were raw & cracked open. I used some OTC stuff which helped. Months later I was switched to Humira.Things went south in a few months. Like you, I just knew it was the Humira. I was referred to one of the top dermatologist in my metroplex. By the time I saw him, I had 4 different types of that mess from head to to foot. I ended up with a staph infection & had to be put in the hospital & later had out patient wound care on my legs.

I went off of Humira finally. I was so convinced it was the Humira. Well, the psoriasis did not go away & to this day I still have outbreaks. And yes, Humira is often prescribed to treat it.The dermatologist talked to me at great length about this. It is a well known fact if you have one AI disease, you are at risk of developing another.

If you quit Humira & you have no further outbreaks great. If Humira is working for your UC, I would think long & hard before stopping it. A good dermatologist can handle the psoriasis.

My worst time starts in the fall & goes on until spring. My triggers are dry skin, during this time I use Gold Bold's diabetic lotion, shower using regular Oil of Olay, I stopped all of the fancy smell good shower stuff,no more long hot showers because it dries the skin. My big trigger is stress. At my worst, I was having a lot of health problems & my stress level was right up there. To this day if I get stressed it shows up.

The diabetic lotion & Oil of Olay was recommended by my husband's internist & his infectious disease dr. He is diabetic & has horrible dry skin. These two products make a huge difference for him & helps me at the same time.

Anyway, just wanted to share with you what I learned.
Posted 12/26/2019 5:45 PM (GMT -7)
Hi UCjustsucks, so sorry to hear about your daughter. The think I find with biologics is they work great when they work, but they are like a mad-scientist lab...sometimes they go wonky. I hope she gets hers under control quickly.

The supplements I started taking when my PSO broke out are nothing new to this forum, but I feel helped me a lot. Can't say which is most beneficial because I started all at once -- I was so down about it I went 'nuclear' smile

- Vit D (10,000 iu)
- Oil of Oregano (80% Carvacrol)
- Turmeric/Curcumin (1500mg)
- Black Cumin seed oil (500 mg)
- Aloe Vera (200:1 extract) 200mg at night

Hope this somehow helps.
Posted 12/26/2019 5:53 PM (GMT -7)
Hi iPoop, yeah can't know for sure, but the timing was uncanny. My GI thought it was 'classic' Humira-induced pso. Indeed it took a while to completely fade, and had to get on steroids to give it a push. My understanding is it's a coin flip if the pso is gone-gone or if it reappears in the future.

I am really struggling with the what-next choice. Enty seems tailor made for the gut, but Imuran seems the 'normal' next step in escalating. My GI thinks Enty is a no-brainer in this case. I hear so often of these bio's fading after a while, and leads me to think why not 'buy' a few years with Imuran first (on the BIG assumption it works in the first instance). My most recent scope earlier this month showed no signs on inflammation, but of course I am on Budesonide. Apparently both Imuran and Enty work best with an uninflamed colon to start things off. Will spend the weekend finishing more research and then off to one of the options.

BTW, love your latest signature quote! Very true.
Posted 12/26/2019 6:07 PM (GMT -7)
Hi Suzie,
Thanks for sharing your experience and your remedies! I will keep these handy just in case. Indeed a shame to have had to drop Humira. In my readings I found it pretty common for Humira to affect people in this way. I would have hung in there, but my outbreak was massive and super itchy. Had it on from head to soles of feet, with chest being the worst. I get a 'tingle' and signs of redness every now and again in my palms, just below my thumb. So I know something is still there, but thankfully hasn't come at me yet!
Posted 12/27/2019 9:26 AM (GMT -7)
For non-RX induced psoriasis please read this if you have not yet tried UVB treatments.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3736829/

This is a well-known and effective treatment that wrongly is not getting much use by dermatologists, who use topical and oral drugs as their main treatment. I know someone (non-UC) who had horrendous sudden adult onset of eczema and spent years not getting relief until he tried photo-therapy from the ONE dermatologist set up to do this in-office. The next step his previous dermo doctor said was going to be a biological called Dupixent and he was not happy about it.

WHY don't dermatologists use a well-tested and documented therapy like photo-therapy? My theory is that it requires rental of costly equipment housed in a separate room plus having a trained staff-member administer it. Writing a RX scrip? No cost. His current dermo (the one who writes scrip not UVB) said they were going to get the new laser-version of UVB that would not require a separate room but nope, they did not follow through.

It may take some detective work to find the right dermatologist who offers UVB treatment for psoriasis and eczema but my relative has been eczema free now for over a year, ongoing treatments are required to prevent outbreaks but well worth it. (Those treatments BTW cost him under $20 on Medicare per session).

IIRC Kim Kardashian mentioned using this treatment for her skin condition. Don't quote me on this lol.

Good luck to those suffering with skin issues. As if UC weren't enough.

Post Edited (imagardener2) : 12/27/2019 9:31:47 AM (GMT-7)

Posted 12/27/2019 10:46 AM (GMT -7)

HardEvidence said...

Next up for me is a decision between Imuran or Entyvio. Taking the holiday to contemplate which direction and weigh the odds. This forum is of course hugely helpful for that, and I’m reading in others as well.

I guess the mantra is ‘it could always be worse’…so onwards.

Sorry to hear you started flaring again. Did your bone scan show osteopenia or osteoporosis? I'm curious to know what your treatment for that will be since I'm in a similar boat. How did you decide to see an endocrinologist for it? I'm confused what type of doctor to see for mine. It sounds like lots of different specialties and even GPs treat osteoporosis.

That sucks you got psoriasis from Humira. I've only been on it 6 weeks now.
Posted 12/27/2019 1:44 PM (GMT -7)

HardEvidence said...


I am really struggling with the what-next choice. Enty seems tailor made for the gut, but Imuran seems the 'normal' next step in escalating. My GI thinks Enty is a no-brainer in this case. I hear so often of these bio's fading after a while, and leads me to think why not 'buy' a few years with Imuran

Just as a note — I’ve been happily in remission due to Entyvio. Infusions are every 8 weeks but only take 30 minutes so I’m usually in and out of there in an hour or less. No side effects. Not sicker more than usual either.
Posted 12/27/2019 6:45 PM (GMT -7)
Sorry to hear you started flaring again. Did your bone scan show osteopenia or osteoporosis? I'm curious to know what your treatment for that will be since I'm in a similar boat. How did you decide to see an endocrinologist for it? I'm confused what type of doctor to see for mine. It sounds like lots of different specialties and even GPs treat osteoporosis.

That sucks you got psoriasis from Humira. I've only been on it 6 weeks now.

Hi Sara, my two readings were -1.7 from my hip (osteopenia range) and -2.7 from my lower back (osteoporosis range). My GP suggested an endocrinologist who can make better sense of the scan results and set me on a program of supplements/meds and exercise, and monitor progress. I guess I'll hear the do's and don'ts of physical activity to avoid fracture. I'll post again after my appointment.
Posted 12/27/2019 6:53 PM (GMT -7)

FlowersGal said...


Just as a note — I’ve been happily in remission due to Entyvio. Infusions are every 8 weeks but only take 30 minutes so I’m usually in and out of there in an hour or less. No side effects. Not sicker more than usual either.

Hi FlowersGal, thanks for sharing and very happy for you! I'm always encouraged when I hear one of the biologics working so well for people. Good for you and may it last forever!
Posted 12/27/2019 7:46 PM (GMT -7)
No problem. The quoting feature does weird things for me too sometimes. We are in similar boats then for sure. My right hip was -2.6 and my other readings were in the osteopenia range. Yes, please share what the endocrinologist says. I'll have to ask my family doctor what they suggest too. I see the sports medicine doctor next Friday and I'm going to discuss my Dexa scan with him.

Good luck with the next UC med you choose!
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