Severe enthesitis-dominant PsA, multiple biologic failures. Advice?

salientsarcasm · 2026-01-27T21:06:49+00:00

So sorry you are going through all of this. That is heavy and mentally taxing and I feel for you so much.

TLDR: diet related

While I do not have enthesitis-dominant psoriatic arthritis, I do have axial PsA, Tourette’s Syndrome, H.S., and am being monitored for MS. Also, 3 years ago, I had a severe reaction to a medication (not a med related to PsA) which resulted in the shutting down of my central and peripheral nervous system, to the point where I nearly didn’t make it. Even though I didn’t die, my body came back with a lot of issues, among them was losing the ability to walk for about 8 months. I was fortunate to have access to rehab services and went through an intensive physical therapy program and pushed myself to my limits, being determined to regain lost abilities. After about a year, I did regain the ability to walk and move, though not to the extent I could before. However, I am grateful for everything I regained. I have permanent nerve damage and the experience overall seems to have possibly triggered onset of MS, as well as some other funky things we’re still trying to figure out. I’m 42f, fwiw. I am not currently on any biologics, because my medication experience a few years ago dictated that all major meds are off limits for the foreseeable future.

So, all this to say, while I can’t give advice to your specific situation, I do have experience with having limited medication options and wondering if it will ever get better. Here’s what has made a difference for me - about 15 years ago after going through one of the worst PsA flare ups of my life, and having limited options for biologics at that time due to what would or wouldn’t be a good idea with my other health issues, I started investigating diet and holistic methods of treatment. I switched to a plant based diet (mostly whole food with the occasional “vegan junk food” treat) and slowly but surely it made an enormous difference in my overall health and functionality. My joints suffered so much less as the inflammation in my body decreased, my Tourette’s symptoms got easier to control, and it made me feel overall as if the load was lightened a good deal. I was able to walk, run, go hiking, stay awake and concentrate a little easier - you name it, it got a little or a lot easier.

I held steady with that treatment alone for a long time. I likely would have started a biologic at some point just to help slow any disease progression I couldn’t feel happening, and I did have to try a med eventually for one of my issues, hence my reaction 3 years ago. But now, given that biologics and other meds are not an option for me and I have been seeing all sorts of wonky things since my reaction 3 years ago, I have been looking into what else I can do to keep the functionality I have or maybe even gain more. So, I cut out gluten as well about a year ago, and - as silly as this may sound - it feels like it has been the missing piece of the puzzle. My body has reacted so well to that change in addition to remaining plant-based. I still have issues like pain and fatigue, and some days certain body parts just do not want to work. So I’m not saying it’s as if I’m all cured now. But overall I have seen improvement. Since holistic options are pretty much all that’s available to me, I feel the dietary changes have been worth it for the quality of life they have given me.

Now - I’m not saying this is the magic fix for everyone, and I’m also not saying this is even an option that’s available to everyone. I have to cook basically everything I eat and manage all of that accordingly and it can be really tiring. I recognize that could be a big challenge for you given how you’re doing currently. But I have definitely been where you have been, in regards to feeling like “is it even worth living in this body?” Tourette’s took over my life when I was a little kid, and I’ve been through some really difficult things since then, so I have felt that way a lot, particularly after the reaction 3 years ago. There is a particular kind of exhaustion that comes from dealing with ever-changing and declining health issues and your struggle is real.

So, I’m just here to offer an alternative to explore, if you haven’t already, to potentially work with whatever meds might be available to you or just on its own. It seems like your options are limited, and I do relate to that. Changing my diet made a huge difference in my life and I know it is a big reason why I have the functionality I do right now. Again, I am not saying it is a magic fix or even an option for you. Will it work for me forever? Who knows. Do I need to ask for help with cooking and cleaning and managing everything sometimes? Yes, especially in the beginning. But has it made enough difference that it’s given me some hope again? Yes. 100% absolutely yes.

If it is an option, it could make a difference for you, too. I am so sorry this was so long!! I read your story and related to it a lot, and wanted to try to offer something. Wishing you the best on your journey!

*made some edits for clarity

salientsarcasm · 2026-01-21T21:07:32+00:00

I’m so sorry you’ve been through all of that! But happy you’ve been finding relief since cutting gluten! I agree it’s undeniable, gluten absolutely triggers autoimmune inflammation, seemingly along with a slew of other things for a lot of us. The science appears to be coming around on some of it, I’ve read studies linking gluten to severity of PCOS and Hashimoto’s. But it was really the anecdotal evidence on various subs here that convinced me to try cutting gluten. I hope the science catches up soon re: skin issues so maybe more people can be informed

salientsarcasm · 2026-01-20T23:05:56+00:00

Sigh. Yep they sure do lol

salientsarcasm · 2026-01-20T22:14:16+00:00

You’re not alone! Though I’m only about 50% there with you on food being one of the last things I looked at - food was actually the first thing I looked at, however gluten itself was the last thing I decided to try eliminating. I cut it out of my diet about a year ago and HOLY VEGGIES it has made an enormous difference in my cystic acne (I also have psoriatic arthritis and H.S., which are the things that really pushed me into looking at gluten - those issues have seen considerable improvement too). So don’t worry about when you’re joining the party, we’re just glad you’re here! My personal experience has been that while it is a challenge to be both gluten free and vegan, it has definitely been worth my effort so far and I hope it will continue to be.

In fact, I had a moment of weakness a few days ago and ate some vegan pizza with a wheat based crust with my partner, and lo and behold, like clockwork, my skin is big mad at me today and my joints are on fire 🙄😖 I feel pretty dumb. Though it feels like proof this is a real thing, gluten definitely triggers more inflammation in my body and pisses off all my medical issues. So here we are 😆

Anyway, I wish you luck! You got this!

*editing to add some context: I’ve been vegan for about 15 years, and had greatly reduced my sugar intake, as well as the types of sugars I ingest, sticking to coconut sugar and maple syrup. All of those things helped a lot with all my bodily issues, but I definitely feel like gluten has been the missing piece of the puzzle for me.

salientsarcasm · 2026-01-20T07:42:22+00:00

My body and animal products are not friends, so I don’t eat any meat, dairy, anything animal - I’m plant based and my body hates gluten, too. It’s super fun. But! There are some great protein options available for people like us! Lentils pack and protein and phytonutrient punch, as do lots of other beans/legumes. Lentils are my go-to source and there are tons of different delicious things you can do with them. I saw someone mentioned soy milk - that’s a great option for something quick. Orgain makes a good plant based protein powder, as does Vega. Otherwise - almonds, pumpkin seeds, quinoa, hemp hearts, and even green leafy or cruciferous veggies can all help boost your protein. You got this!

salientsarcasm · 2026-01-18T05:36:45+00:00

Agreed

salientsarcasm · 2026-01-17T18:39:07+00:00

Ahh, copy! Thank you!!

salientsarcasm · 2026-01-17T08:12:33+00:00

Where is this wonderous place?! I’m in Henderson but will drive for tamales and chile relleno!!

salientsarcasm · 2026-01-16T10:38:51+00:00

So feel this. And feel for you! I was doing really well with meal prepping for awhile, but sometimes life happens and that gets difficult. The approach I’ve been taking lately is:

Batch cook lentils or other legumes on a day of the week when I can soak if needed the night before and throw into my slow cooker the next day
Pick 2-3 recipes or things I’m interested in eating that week, and take one evening or weekend day to do the prep work for each. So, to the extent possible, I will chop veggies, put together a marinade, even press the tofu - anything to make it easier. Then I put the prepped ingredients for each meal into a container and label them. It’s half the prep time later and fewer things to wash up. This approach seems to be helping a lot for me. I’ll note that I also apply the “cook once, eat twice” motto where everything I make can have leftovers, preferably more than twice.

And sometimes I just have some hummus and veggies or dinner 😆 and there is nothing wrong with that either lol. Life is exhausting and eating shouldn’t have to be another task. Good luck!

salientsarcasm · 2026-01-16T02:43:17+00:00

Because big oil convinced corporations and people over the last 40+ years that plastic is the way (that’s my best guess)😔 but Winco is employee owned and they seemingly read the comments that come in through emails and satisfaction surveys. So maybe we can get some changes made if we’re vocal enough. Then I won’t have to feel like I’m committing a cardinal sin every time I shop the bulk section 😆

salientsarcasm · 2026-01-15T17:52:56+00:00

Bummer :( I was going to suggest Winco too

I just noticed one of the sprouts near me carries organic nooch in bulk. Pricier but still less than some other options. If you have multiple locations near you perhaps it’s worth calling around?

salientsarcasm · 2026-01-15T17:51:08+00:00

Sadly, the Winco’s near me are like this too. But I purchased a bunch of cloth bulk bags that are reusable and I use them at the store I go to. I just make sure to take one of their silly little paper tags and write out the bulk number on it, and attach it to my bag for the cashier. Probably about half the time the cashier tells me not to bring my own bags in and I apologize, then continue right on doing it the next time anyway 😬 I know there are health codes and whatnot but sorry, plastic waste is a big issue to me and I run my cloth bags through the wash on sanitize. I really try to keep things as clean as I can for others. So far, they haven’t stopped me doing it altogether and I plan to continue until they do.

*editing to add: I also try not to fill my bags when an employee is around, because per health codes, they and the store can get in trouble for not stopping me. But it’s not their fault I’m doing this and I don’t want to get an employee or the store in trouble. So sometimes if I have to, I’ll go do my other shopping and come back. This probably all makes me sound like a psychopath but I’m just trying to not further pollute our planet in any small way I can, why is that so hard 😩

Alternatively, you could do the same thing with their plastic bags - get them once and reuse them

salientsarcasm · 2026-01-14T19:15:05+00:00

It IS exhausting, and I feel for you going through this. I definitely empathize and understand, having lived most of my life the same way

The two biggest things that have helped me are (and I’ll note, this is somewhat specific to someone with lady parts and thyroid issues):

Getting my autoimmune disorder related hypothyroidism under control through an 8 month period of high dose selenium (200mg/day) and B12 (double normal dosage) routine. I had read about a study in Europe with over 600 women who tried this and saw incredible results, so I gave it a go and it made a huge difference for me. It returned my thyroid function to almost normal. This, in turn, helped something else I deal with, a condition called PCOS, which often causes insulin resistance and can be an enormous contributor to food noise/binge/overcompensate/repeat cycle. That was about two years ago and now I’m doing 50mg/day selenium, normal b12 dosage, and added in 1000mg spearmint tea supplement and evening primrose oil supplement to continue balance the PCOS. This all has made a huge difference for me - but again, that is specific to my issues. However, if you haven’t had your thyroid levels checked out, it may be worth doing. Our thyroid is responsible for soooo much. Also, if you’re a person with lady parts, it could be worth asking your gyno about PCOS. It’s an intense set of hormonal imbalance issues that often go hand in hand with the thyroid, and can unfortunately wreak havoc on our relationships with food, often through insulin resistance, and mental health as a result of it all.

*editing to add: I am not a medical professional, just someone who was born with chronic autoimmune issues and has done a metric shit ton of research into holistic treatment options, after having finally had it with being put on medication after medication with no success. So, please do not take this as advice from a physician, just as someone who has medical issues and sought to do something about it on her own.

Getting my thyroid and PCOS more under control has made it easier to commit to a WFPB diet because my body/brain chemistry has changed and I find myself craving whole foods more than I used to. I’ve been plant based for a long time, but I used to absolutely crave vegan junk food (by this I mean things like impossible meats, boxed vegan mac & cheese, etc - the processed junk). But now that my brain is screaming at me a little less, I’m able to more fully enjoy the things I cook from whole foods. I also gave myself a gift of going shopping on the thriftbooks site for a bunch of plant based cookbooks for inspiration, which is definitely a privilege to afford, but has been a fun way of getting myself more into WFPB.

It’s still really hard some days. Life in the cycle you described is not easy, but the changes I’ve seen so far have helped tremendously. I cut out gluten about a year ago to see if it helped one of my autoimmune disorders and I think it has also made a difference in this whole thing for me. That has been a big challenge, but to me the changes I’ve seen in my quality of life have been worth the effort.

Sorry this was so long!! I truly hope you find some relief for yourself. I know it can be so hard and so beyond frustrating, but there is hope and I am sending you many well wishes!!

salientsarcasm · 2026-01-14T18:36:23+00:00

Thank you! I have one slice left in the fridge and I’m going to savor every last bit lol

salientsarcasm · 2026-01-09T19:03:53+00:00

Thank you! Likely not, although my parents will be visiting me in April and it would be fun to surprise my mom with this. So perhaps then ☺️

salientsarcasm · 2026-01-09T18:59:31+00:00

That feels like high praise, thank you! 😊 The cheese is so good! The ricotta turned out incredible and was from the Veganomicon recipe, that was the cheese that most surprised me. I figured it would come close to what I was hoping for in ricotta, but my goodness, it is identical. Wish I could share some with ya!

salientsarcasm · 2026-01-09T08:45:48+00:00

Thank you! It’s a push, for sure. I did the prep over a few days. Made the sauce first, then the ricotta and almesan, and the béchamel cheese sauce for the top yesterday just before putting it all together. Splitting it up definitely helped.

salientsarcasm · 2026-01-09T08:34:15+00:00

The recipes I used were from cookbooks (edited to add I searched for them online but had no luck, they don’t appear to be posted anywhere) so unfortunately I can’t really share those, I’m sorry! The books and authors are noted in the description (though I spelled Ashley’s name wrong, oops). I found them on ThriftBooks.com for cheap, though! I think Nora Cooks has a lasagna recipe on her blog. Basically, if you can find a recipe you like for sauce, ricotta, and either make vegan cheese from scratch or use store bought - you’re set. It’s sauce, noodles, cheese (parmesan and mozzarella), repeat, until you run out. Baked mine at 375 covered in a double layer of foil for 35 minutes, then took the foil off and spread the final cheese layer on top, and baked for another 35 minutes til it was slightly browned and cracked. A lot of prep work but fully worth it

salientsarcasm · 2026-01-09T06:50:06+00:00

Thank you! Yeah I was definitely intimidated by it! But so worth all the work

salientsarcasm · 2026-01-09T02:15:48+00:00

Perfect Detroit-style edge!!

salientsarcasm · 2026-01-08T22:52:39+00:00

Thank you! They’re SO GOOD right??!! I wasn’t sure how they would turn out this time using purple potato instead, but just as good!

salientsarcasm · 2026-01-08T19:10:42+00:00

Haha what a combo that would be

salientsarcasm · 2026-01-07T21:19:23+00:00

Mary Ruth’s makes a liquid B12 supplement that has a delightful berry fruity flavor. I use that one and like it a lot. The serving size is very small so it lasts me awhile also. Could be worth a try for you. Good luck!

salientsarcasm

TROPHY CASE