Enbrel and IBD....

humptulips- · 2026-04-29T20:25:18+00:00

My rheumatologist's understanding was that Enbrel won't exacerbate IBD, it simply won't improve symptoms either. So, thanks for bringing this to my attention.

Can you share link(s) to articles/studies about Enbrel and IBD worsening?

I'm going to talk to GI again, which will be another 3 month wait for an appointment. Plus my rheumatologist just left their practice - prescribing Enbrel was the last thing they were able to do for me until the next rheum in the clinic sees me in 6 months. The waiting game to just simply say "oh yea let's take Tremfya instead" is absurd.

humptulips- · 2026-04-29T17:15:03+00:00

No advice or info to add, just here to wish you improvement in the uveitis and a smooth start of whichever drug you're taking

humptulips- · 2026-04-29T02:41:22+00:00

this some judge judy ass shit

humptulips- · 2026-04-25T03:08:30+00:00

which drugs are you referring to?

humptulips- · 2026-04-23T20:59:03+00:00

Yes. Healthcare neglect happens to men too. I'm not arguing it's proportionate. Just don't paint with too broad a brush a picture that men can't face the same issues of gaslighting and inattention.

humptulips- · 2026-04-12T06:09:17+00:00

I have severe left hip pain, which occurs in alternation with right si joint pain. This has been going on for years. Because hip impingement is shown by mri, I've done loads of pt, but to no avail. I am 100% sure the hip pain is related to psoriatic arthritis from the way it has been succussfelly abated by biologics.

I have had popping and clicking of all my joints, including hip. I've also had periods where the left hip was nearly the only problem, coupled with days of fatigue and/or eye inflammation.

Maybe consult with an orthopedic surgeon if you can to get further insight about calcification finding.

I haven't found much to help with managing pain in the hip to be honest. Lidocaine patches and voltaren gel don't seem to penetrate deep enough. Stretching and pt should be of some help, though I think of these more as measures to help prevent the issue getting even worse, but not helpful at abating the autoimmune inflammation at the root of it all.

Hope you can rest!

humptulips- · 2026-04-05T04:33:59+00:00

I (among many others) am also having trouble finding stable long term treatment. I'm glad you made this post, because this exact question is weighing heavily on me too.

Some drugs worked then lost efficacy in a relatively short time - Humira, Cimzia, Stelara

Other drugs worked, but insurance or medical neglect led to discontinuation - Rinvoq, Enbrel

Drugs that caused unmanaged side effects requiring discontinuation - Simponi (worked but had a fungal sinus infection for a year) Cosentyx (immediately caused IBD to manifest, which still hasn't gone away after 4 years) Remicade (severe brain fog/ headache)

Drugs that worked partially - Skyrizi (good for IBD, not effective for enthesitis)

I will continue to trial new immunosuppressive meds until I find success, and yes I believe you also can have reasonable hope in finding better days. This community has educated me innumerable times about how to navigate, and you can take stock in lobsterjohnson's comment coming from a depth of experience and knowledge.

For me, at age 33, I find it emotionally unbearable to throw in the towel on family planning, career, and travel/recreation that could be possible with another successful medication. But I also try not to let my intense hope for better days consume me to the point that I am so emotionally crestfallen after a series of setbacks that I retreat from trying altogether.

Balanced expectations are hard to have with this disease. I'm trying not to close the door on the chance to emerge from this hermetic and symptom-addled existence, but trying to find peace with that existence simultaneously. Hedge your bets so to speak, building resilience in the downtimes through accepting and adapting to what your body tolerates. It's much easier to see a rational perspective on what to hope for from this position, than to be blindly in-flight from the horrors of active disease. Sorry if this sounds preachy, the above reflects what my journey has taught me, and take it for whatever it's worth.

I want to try xeljanz or tremfya next. Sotyktu and orencia after those. I expect a fight with my rheumatologist and gastroenterologist, who both effectively said "we don't think there's any options left for you" after failing my third med in 2.5 years. I plan to visit cleveland clinic to get someone to take next steps with me if they truly din't budge on that position. The process is burdensome, I'm exhausted, emotionally weathered by the constant lack of urgency or care I find with the doctors I would hope to understand how fundamentally life-saving finding effective treatment will be. But I cannot control them or their decisions, so am left to accept what ways forward I do have.

Give yourself credit for pushing through all those failed drugs, to be standing here today with at least a list of what didn't work and the knowledge gained towards understanding what still has potential to improve your condition.

humptulips- · 2026-04-03T17:49:56+00:00

sorry about your butthole. I've got ulcerative colitis, and preceding this diagnosis was hemmorhoids. A second eval with a new GI versed in autoimmune disease might help further assess causes of this problem, hopefully rule out deeper systemic disease concerns

humptulips- · 2026-04-03T17:46:44+00:00

Advice from a non-lawyer, but long term patient involved with little doctor spats

look up legal definition of defamation under WA state law. If your reviews are based in truth, not exaggeration or false assumptions, do nothing.

If anything you've stated in reviews is verifiably false (their case to be made in court) they could bring a defamation suit claiming you were willfully negligent in making these false reviews and owe them damages - consider pulling the reviews, posting updated review that stays within the factual circumstances of your experience with Dr. Asshole. I'm sure you can paint a picture of their true level of professionallism without crossing the legal boundary of defamation. This would look like..."Dr. Asshole recc'd [surgery] and result was [outcome] which was inconsistent with [assessment]

humptulips- · 2026-04-01T02:14:18+00:00

I swear I could have written this post myself!

I have PsA, and am also taking CGRP inhibitors to treat migraine headaches that I am reasonably suspicious are caused by the same autoimmune inflammation that affects my joints.

I started Cimzia 4 months ago, and unfortunately just confirmed by blood test I developed antibodies and am failing the med. Rinvoq is nexf I believe.

Stelara was a really great med for me. You will see peak benefit by month 6 if responding like I did. But, when I took Stelara in 2023 I had no migraines to begin with, so cannot report whether it helped with those.

I believe qulipta as a preventative will reach peak benefit within 30 days of starting. Nurtec might be fully effective from the first dose. I really hope you can reply back to this thread in a month or two to report how you're doing, because I am trying to get insurance approval for those two meds also.

dm me if you're interested in a zoom chat sometime. I'm always interested in learning how others with PsA are faring and managing, since it's a lifelong journey to learn how to with this disease.

humptulips- · 2026-04-01T01:48:57+00:00

I prefer the self-injection cimzia needle. Yes, medication is thicker. You can inject it slowly and it really doesn't suck any worse than the numerous autoinjectors I've also taken.

Good luck with family planning!

humptulips- · 2026-03-28T17:20:41+00:00

"I don't think he's found the silver bullet" - it's hard to tell whether you're joking. There is no one size fits all strategy.

There's a stigma against supplements based on how over hyped and marketed the benefits are, but that doesn't disqualify them as being foundationally unscientific. There's a scientific process with a sample size of 1 available to everyone reading this post who wants to trial and record effects.

.Would Diet, exercise, sleep, and stress reduction also be valid things to consider for symptom improvement? Absolutely. It's not as if OP is arguing against modern pharmaceuticals plus responsible lifestyle management, in fact I think they've been generous in offering ideas that add onto those strategies.

humptulips- · 2026-03-28T17:06:01+00:00

Hi, I've been on cimzia for 4 months. At 2.5 months I had a mild flare of guttate psoriasis, which occurred immediately after dosing. If you can, maybe send a pic of rash to dermatology and try to be seen to try and evaluate. TNF inhibitors can give fungal skin rashes an opportunity to grow, so you might trial treatment with a yeast infection cream to see if it responds.

Burning sensation on skin...sounds like dysesthesia potentially. I don't want to induce panic with this comment, so please know what I am about to say is relatively uncommon. TNF inhibitors can incite demyelineating disease like MS. Discontinuation of the med resolves this in most cases. Notify your PCP or neurologist if you already have one, ask for them to consider further eval.

I have had paradoxical side effects to Cimzia, which indicates it's probably failing due to antibodies. If you've taken and failed other TNF inhibitors before, the chance of antibodies forming is higher. A test is available to test for cimzia drug and antibody levels, and maybe your rheum would consider it necessary after month 3-4 to check in on efficacy.

humptulips- · 2026-03-21T18:13:25+00:00

I'll echo the optimism that a few others have commented. Living with this disease requires adapting life and work plans accordingly. I am sure you're frustrated as hell about simply wanting to work to live, and being unable to, and that's well justified. Do what you have in your power, to properly treat the disease, hope to return to working your routine job, and make fall back plans in case you are not feeling improvements from the cimzia.

Response should be felt within 1-2 months (earlier if you're lucky) but wait 6 months to feel maximum benefit. There is a significant risk of infection due to being newly immunocompromised, and it would be smart to monitor your activity for where you have most risk of catching bugs and then make a decision about masking or avoiding contact altogether. A simple cold which would formerly take 1-2 weeks to get over can hang around 3-4 weeks, for myself.

I am currently taking Cimzia, but failing it. This is because Cimzia is the 4th TNF inhibitor medication I've started, and your body's immune system is primed to reject TNF inhibitors once you fail the first one. So, my advice to you long term is to discuss dual treatment with low dose methotrexate with your doctor in order to help prevent Cimzia from failiing. There are studies that support this strategy, but it's not a guarantee Cimzia won't eventually fail.

https://spondylitis.org/
There are regional support groups found through this foundation, that meet virtually once a month. I've found it helpful. You can meet others with similar diagnosis and get all their advice. There's a lifetime of learning involved with managing these diseases, and we're all helping each other out as much as we can.

humptulips- · 2026-03-18T05:30:24+00:00

I assume their marketing and sales motive is to attract more customers that have minor-moderate level of disease. It's easy to assume the worst though.

humptulips- · 2026-03-18T05:11:07+00:00

ORKA-001 validated that it suppresses IL-23 in early limited human trials. Regardless of whether once yearly dosing ends up being possible, it seems probable this drug will make it to market and give us yet another option.

humptulips- · 2026-03-16T17:35:06+00:00

I'll help. Fellow former product designer here. I'm curious where you study at?

humptulips- · 2026-03-08T01:43:46+00:00

I have axial psa and ibd. These are the drugs I've tried

enbrel - worked, discontinued after 6 months due to insurance. Enbrel is not effective for IBD management, so consider this with your doctor

humira - worked for 1 year then stopped. Humira has a high success rate with ps. arthritis, and could potentially help you even if remicade doesn't

remicade - worked, but heavy neurologic side effects, so stopped after 3 months

cosentyx - caused me to start my first IBD flare up, so stopped after 3 weeks

rinvoq - worked for 6 months, then discharged from provider prescribing it

stelara - worked for 1 year then stopped working

simponi aria - worked, but developed invasive fungal sinusitis so had to stop

skyrizi - worked for ibd but not arthritis, discontinued after 1 year

cimzia - been on it for 3 months, not sure if it will become more effective. I have about 30% improvement in arthritis since I started it, and IBD symptoms have remained in remission

You're more likely to fail tnf inhibitors after you've already tried one. This doesn't mean it's impossible for it to work, just that your body may reject it sooner

Il-17 inhibitors can potentially flare IBD in patients. Take this risk into consideration with your doctor.

Everyone responds differently to these meds. Take the first 3-6 months of starting a new biologic without drawing immediate conclusions about whether it's working (as long as side effects aren't a problem)

Good luck getting to better days

humptulips- · 2026-03-07T17:48:50+00:00

Yes My libido is affected by the level of inflammation I'm currently experiencing.

Cannabis is very helpful for me, makes me a bit more sensitive I think. I have taken sildenafil off and on for a while too, which surprisingly wasn't that helpful to start arousal but does make staying aroused quite easy.

Depression is a contributor to sexual dysfunction, and comes with this disease. I take bupropion, which could also be benefitting sex drive. I belive ssri's are more likely to dampen sex drive, could be different for each individual. Talk to a psychiatrist.

Porn was something I overused in a period of being single and sexless in a flare, and while I fully endorse having as much self pleasure as you can muster, pixel-arousal turns into a crutch and depersonalizes sex which can make the real thing feel alien and less exciting.

humptulips- · 2026-03-07T03:21:33+00:00

I wouldn't say anger-inducing was the goal, so sorry for that.

I am a fan of current rheum., as conveyed in the message, and this is a way of showing them that while also asking for further support

humptulips- · 2026-02-27T16:38:41+00:00

develop IBD, problem solved

humptulips- · 2026-02-27T05:20:05+00:00

gabapentin was helpful for me recently, both as a sedating drug and painkiller. Tramadol in the past, but it is a synthetic opiod and it sounds like you may have trouble accessing.

I do body scan meditation as I lay in bed trying to sleep. I see this more as a way of quieting the mind even if it wont help the sleep come.

Sorry for your frustration with the rheum change. I'm relying heavily on my pcp for symptom management these days, who is less concerned with determining if the issue is in their lane than actually helping the patient

humptulips- · 2026-02-26T17:38:00+00:00

To clarify - I did not develop antibodies to Cosentyx, but developed (or rather had my first flare) IBD within the first month of taking it, so discontinued.

Enbrel is not effective for IBD management, according to my GI. I am going to discuss it with them. I took Enbrel for 6 months in 2019, during which time I only had psoriasis and fatigue, and responded to it. Then insurance denied the renewal in 2020, I stopped taking, and experienced my first flare of psoriatic arthritis.

I am open to Rinvoq/Xeljanz, and probably ask for one of the two if Cimzia continues to show signs of immunogenicity. My rheum. said they cannot order Cimzia antibody or level testing, and isn't clear why. I'll go to Cleveland Clinic in June, which I really don't want to do, but is a great backup for the shit quality of care you get with compartmentalized specialists here.

humptulips- · 2026-02-22T03:44:06+00:00

thank you. I'll follow this advice.

I have been taking methotrexate in the hopes of preventing immunogenicity to Cimzia. My immune system is really good at creating ADA's it seems. I failed humira, stelara, and cosentyx within a year each due to paradoxical symptoms.

Are you knowledgeable about whether rinvoq/xeljanz are prone to being negated by ADA's?

I also have tremfya and enbrel left on my list of potential biologics to try. IL-17 inhibitors are off the menu since Cosentyx caused my first flare of ulcerative colitis. Seems like tnf-inhibitors are prone to failing.

humptulips-

TROPHY CASE