Psoriatic Arthritis for the novice

May 27, 2023 6:20 AM

Recently diagnosed with psoriatic arthritis after decades of having plaque psoriasis. If you hav psoriatic arthritis, do you have any day to day, long term, and other advice for me?

I have a rheumatologist and am in the process of getting set up with a biologic and a bunch of vitamins and supplements. I already lead a fairly active lifestyle thanks to my job but have *very* limited discretionary time thanks to my kid.

My body weighs about 20lbs more than it is happy with. I currently have no dietary restrictions other than dairy doesn’t work well and play well with me and I hate coffee.

My hands are not affected nor my feet.

What advice do you wish you had?

Recognizing that autoimmune disease can be variable from person to person, what techniques, ideas, philosophies, products, etc, have worked for you?

Are there good forums?

posted by sciencegeek to Health & Fitness (9 answers total)

Family member of someone with PA here. Our experience over the past 6ish years since dx is that the worst part is the monthly wrangling to get the biologic, which your insurance company will regard as a prescription for the Ark of the Covenant and you will have to apply for various coupon programs and also unearth the phone number of whoever is the one and only Priceless Antiquities Approver at their secret underground insurance bunker.

Otherwise the experience has been largely that each biologic works for however long it works and then you'll start flaring again and need to change, which has also been the story for everyone we know with autoimmune diseases, Chron's etc. Obviously the pandemic is scary, we don't actually know if the vaccines work on them and if so for how long. (It's actually possible they got COVID in January 2020, if so it followed the typical "mild-ish" path of early COVID.) We live a conservative life with regard to exposure. Other than that, basically zero daily life impact, except it has been observed that their seasonal allergies are way worse than they used to be (could just be age, though).

They did get originally try weekly methotrexate treatment, which at least used to be protocol to try to chemo it into remission. It was pretty brutal* and ruined every weekend. They'd go run all errands/do all chores before noon on Saturday, take their dose, and aside from appearing briefly Saturday afternoon or evening for dinner and going straight back to bed they basically perked up a little just in time to spend Sunday evening dreading going to work Monday. It did not appear to be doing much after 6ish weeks, and bloodwork showed creeping liver numbers, so they moved on to the biologics.

The biologics come in autoinjectors, and that's not super fun and it always takes them a minute to psych themself up to do it, but it's over quickly and then there's treats. There is also quarterly bloodwork, which is a bit of a hassle but no worse than that. We asked about supplements and the doctor just made a face (she's a pretty straight-talker) and said no, as long as they are generally getting normal dietary nutrition.

I think we're probably on the high side of possible outcomes. It was caught before a ton of damage was done, and the worst joint (a knee that required several rounds of fluid drainage and at least one steroid injection) has been quietly behaving for years now, though it is their bellwether for incipient flare along with a thumb and toe that also took early damage.

On the dairy thing specifically, they have become increasingly intolerant - though again, can't say for sure if it's just age, as I also have become increasingly intolerant - and that has kept consumption low, and I have no idea if that contributes to a pretty low incidence of flares.

The plaques have stayed gone pretty much from the start of treatment (their appearance was the 1+1 that led us to figure out these joint pains weren't just age and a brief period of doing intense physical labor), and only returned to make it obvious the Humira had stopped working and they were in full flare.

I don't know that it represents any real life change for us, aside from being something to worry about. Hopefully you respond well to treatment and feel better than you've maybe felt in a long time, if this has been slowly creeping up on you. If you are having joint mobility issues, get a physical therapy referral from your rheum and make sure the PTs you're working with understand what PA does and how to protect your joint health.

*Not especially brutal on a chemo scale, obviously, because it's not that high a dose, but certainly something of a shit sandwich to deal with that every weekend.
posted by Lyn Never at 7:25 AM on May 27, 2023 [4 favorites]

Welcome to the club. I'm sorry you're here. PA is part of the spondyloarthropathies group of conditions, and in the US, The Spondylitis Association of America is an excellent resource for information. They have online forums and virtual and in-person support groups. They also promote research, connect patients with studies, and have an annual conference with all the big new directions in research each year. There are some Facebook groups, but I have found them of limited use--lots of people promoting things like the carnivore diet that not only don't have research to support them but are outright dangerous.

As Lyn Never says, the worst thing has been fighting for the biologic medication every single month like I suddenly spontaneously got better, and being immunocompromised in 2023 means my life will never be "normal" for the foreseeable future while the rest of the world has "moved on", which for me has frankly led to a lot of loneliness and anger. But not being in pain and fatigued all the time is worth it.
posted by hydropsyche at 7:40 AM on May 27, 2023 [6 favorites]

Just to comment on some of the info above, you can get biologics in non-autoinjector forms. When I asked my provider for like a vial or something she said "oh yeah we have preloaded syringes for control freaks". While slightly miffed, I did feel seen.

I have Crohn's and I also do not tolerate lactose well anymore (but am also missing some intestine, which is a factor). Cheese seems okay? Oatmilk is delicious.
posted by sibboleth at 8:39 AM on May 27, 2023

I'm not a PA patient but I'm in the spondyloarthropathy group and have done my years of methotrexate before advancing to a biologic. I have two pieces of advice:

1. Get your exercise habit built early and often. I have a misbehaving ankle that's killed my exercise habit twice and it gets harder each time to go back.

2. Keep an eye on your gums because there are related problems that can appear there. I have a form of pemphigoid that my dentist IDed and I'd never have caught it without their help. A strong relationship with a good dentist has been a lifesaver for me.

Welcome to the club; sorry you're joining us.
posted by gentlyepigrams at 10:46 AM on May 27, 2023 [1 favorite]

Seconding... well, basically everything everyone's said above, but particularly the elimination diet. Most effective thing I can do to manage my symptoms is avoid gluten. Dairy doesn't do it for me, and a friend with PA can do gluten and dairy, but not, as it turns out, corn. So a really solid elimination diet is a good idea. I did the Whole 30 because it's got good documentation and support, but anything you commit to (including a controlled reintroduction phase) will do it.
posted by restless_nomad at 12:13 PM on May 27, 2023

Hi, I also have PA! In my case, dietary changes made no real difference and the ones I have made have had more to do with weight loss than anything else. That said, for me, adding more protein and starting the meal with protein has helped in both symptoms and weight loss so make of that what you will.

Some things I don’t see mentioned above:

1) your doctor probably already mentioned it, but since biologics somewhat suppress your immune system (from mildly to quite severely depending on what you need), they recommend getting your primary COVID sequence and any live vaccines you need before going on to. If you aren’t up to date on your vaccines, I recommend getting up to date first. Also, you might need additional boosters for COVID and a pneumonia vaccine.

2) if they make you try methotrexate first, remember that it can make you very temperature sensitive.

3) you may need accommodations for work at some point, depending on what you do. Find out the process now so that you know for later.

4) my doctor told me that I would be wearing a mask for the rest of my life. While I have eased many of my restrictions for summer (where my job has less people and outdoor eating is possible), I still wear an N95 while commuting, etc, and the vast majority of time when I am not home otherwise. If you aren’t already doing that, find a mask that is comfortable for you for daily wear (it took me several tries and that’s ok) and buy in bulk. I recommend Project N95.


5) recognizing that things can vary, I recommend investing in some small ice packs, a heated wrap And a brace or two for bad days. Being able to heat or ice an area really helps.

6) Doctors can be very cautious about pain management and so can insurance companies. I recommend discussing options for really bad and moderately bad days with your doctor. Depending on your other medical conditions, you may need to have more than one option. I have a last resort drug (Ultram, a mild opiod), a moderately bad drug (Mobic), and then take ibuprofen or acetaminophen as needed. I also have a TENS unit. You will find what works for you after experimentation.

7) Fatigue can be a real issue. If it is for you, you might want to plan for that by getting more rest when you can before whatever causes fatigue for you.

8) Once you are on a biologic or methotrexate, expect that you will both get more upper respiratory illnesses, even masked, and they will last longer. You will also be able to spread them longer.

9) you are going to have to be really careful with antibiotics and antifungals once you start the biologic. There are some that aren’t recommended anymore and your doctors are likely to be extra cautious.

10) that said… live your life and enjoy it. Loneliness etc can also suppress your immune system.

11) the Arthritis Foundation also has some good support groups. I have had a better experience in general disability support groups than PA specific ones (I have found them to have more problematic “cures.”) there are some on Facebook, Twitter, Mastadon, and Discord.

12) if you aren’t in therapy and can be, it can be helpful with the mourning and coping phases.

Nthing the recommendation for a good dentist - you also might want to talk to them about whether anything needs to change with your cleaning protocol; some people can have a reaction to cleaning including chills and if you are getting a deep clean you might need medication assistance to prevent illness.

If it would help to chat, please feel free to MeMail.
posted by eleanna at 2:06 PM on May 27, 2023 [1 favorite]

heated mattress pad & electric blanket

you don't necessarily need to sleep with them on, but crank them up in the morning before you get out of bed so your joints are pre-warmed before you try to use them

makes a huge difference
posted by Jacqueline at 4:53 PM on May 27, 2023 [1 favorite]

Response by poster: Thank you for the reminders about vaccines: I’d already planned on getting my regular TDAP at the pharmacy but I’ll add the latest COVID and see if I can do the multivalent pneumonia one as well.

My spouse takes immune suppressing drugs (methotrexate) so the whole family is already masking to try to keep him healthy.
posted by sciencegeek at 5:28 PM on May 27, 2023 [2 favorites]

the worst part is the monthly wrangling to get the biologic, which your insurance company will regard as a prescription for the Ark of the Covenant and you will have to apply for various coupon programs and also unearth the phone number of whoever is the one and only Priceless Antiquities Approver at their secret underground insurance bunker.

So true. For what it’s worth, I’ve been on Enbrel since 2010, maybe (?!) and it still works, I haven’t had to switch (pregnancy was actually the best immunosuppresser). Getting the diagnosis was actually the hardest part - they scoped my knee, thinking I had torn my meniscus! - and any flares I’ve had in the last 18 years have been when I’ve had to stop taking my meds (trying to get pregnant, whenever I get a cold or something). Hopefully your experience will be like mine - your wonderful rheumatologist will watch you closely, your meds will be a PITA to procure but will work, and your life will be otherwise unaffected.
posted by Pax at 6:51 PM on June 4, 2023 [1 favorite]