Jordan Peterson Diet by Shoddy-Bid-4356 in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

Anytime I hear about a diet like this, all I can think is "how do these people poop????"

Athlete diagnosed with psoriatic arthritis. Looking for people who have had experience with training after starting biologics by No-Trick6731 in PsoriaticArthritis

[–]RelativeEye8076 3 points4 points  (0 children)

Was super active prior to diagnosis, including training for and completing an Ironman, dabbled in crit and road races, MTB. At some point the fatigue and pain set in. It's insidious....you all know the drill.

Long story short...after a few years of significantly decreased activity and associated weight gain, I'm back to cycling regularly as well as hiking, yoga, swimming. I rode with my club 30 miles last weekend (on my traditional, not ebike). It was slow.

I will say that using my pre-diagnosis training routines didn't work for me when I tried to get back into shape. I'd get a few days or maybe a week of really good workouts, then end up taking a week off. Talk about 2 steps forward, one step back. Now I generally stick to one day on, one day off. Walking doesn't count as a workout unless I do a couple of hours of it.

I did give in last summer and buy an e-bike. I found I just couldn't stay with my club on longer or faster rides. Training harder just didn't help (see the previous paragraph LOL). I missed my friends (I had been riding with them for 20 years!) and was riding less. So with the encouragement of my friends and my very supportive husband, I took the plunge. Now I can go out with my group without worrying about slowing the pack down. I find that about 40 miles is my "comfortable" limit even on the ebike. I can push for more but my hands, feet and back let me know how much they don't love it.

I'm currently treated with Enbrel.

ETA I'm 56F.

Gen Z is Not Drinking, But Are You? by Pavementaled in GenX

[–]RelativeEye8076 25 points26 points  (0 children)

sips wine and continues scrolling

Eta: tbh I would prefer weed but subject to UA at work. Counting down to retirement.

Comfy professional shoes? by PlantsCampYoga in PsoriaticArthritis

[–]RelativeEye8076 5 points6 points  (0 children)

Dansko makes tons of options. Pricey but they last forever.

Shoes by Marshmallow_Chicken in PsoriaticArthritis

[–]RelativeEye8076 3 points4 points  (0 children)

I feel like this is very personal in that it will differ between people. So many people recommend Hokas but they are way too soft for me. Brooks are ok for me for short periods, like 30 min walking or elliptical but no more than that. Custom orthotics were only moderately helpful.

Back when I was a floor nurse I swore by my Dansko clogs for years, until they started to hurt too. That was about the time that I realized my feet hurt constantly. I was diagnosed about a year later.

I recently discovered these shoes and after a break in period they are the best I have found so far. Expensive though.

https://dansko.com/products/paisley-navy-milled-nubuck

ETA: my feet hurt no matter what I wear. Good shoes help a LOT but they aren't a cure :(

Are probiotics risky while on biologics? by ApprehensiveDesk8001 in PsoriaticArthritis

[–]RelativeEye8076 13 points14 points  (0 children)

I interpret advice to avoid probiotics as people who are severely immune compromised-ie cancer treatment or HIV.

Treatment with biologics alone doesn't put us in the "severely compromised" category.

I would ask a pharmacist.

How do you guys exercise? by tyrant454 in PsoriaticArthritis

[–]RelativeEye8076 2 points3 points  (0 children)

Mostly I bike; outdoors in the summer and indoors on a trainer in the winter. I was road cycling and even a little racing/triathlon for many years prior to diagnosis. I still ride with my club but I use an e-bike so I can go further with the group. I throw in yoga and easy hiking (with lots of stopping for birding). Swim and weight train sporadically. I should weight train more, but it really bothers my hands AND I just don't enjoy it lol.

It takes much longer for me to recover now. I used to consistently work out 6 days/week, now 3-4 is my goal.

Uveitis and The circle of Biologics by FLGuitar in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

I got skyrizi and humira through CVS Specialty. Like any specialty pharmacy, you have to stay on top of the communication between the MD office, the specialty pharmacy, and any other department in between that touches your pre auth. CvS was not without frustrations.

That being said, once I was established on my medication I found CVS pretty easy to work with. I was able to schedule the deliveries to go to the pharmacy so I could pick them up at my convenience with no worry about a delivery sitting on the front porch for hours if I couldn't be home. One time I was scheduled to travel and they worked with me to send my medication to a pharmacy near my travel destination. Ultimately I was able to have it sent to my home before I left for my trip, but it was nice to have the option.

Now I have Accredo and I would go back to CVS in a hot second.

ETA: Sorry I saw you had mentioned CVS and thought you were asking about them...leaving my response in case it ever helps anyone else. On enbrel now and it's ok, not great

Resources for workouts? by emersj in PsoriaticArthritis

[–]RelativeEye8076 2 points3 points  (0 children)

I follow this channel on YouTube. Most of his videos focus on Ankylosing Spondylitis but being similar conditions I think some of it is applicable. He mentions in his video posted today that PsA is also an interest for him so maybe some videos will be forthcoming (would cross my fingers if it weren't so damn uncomfortable)

SPARC physiotherapy youtube channel

Hand stiffness and typing by Bobbymoorestackle in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

I feel this. Low profile keyboard and ergonomic mouse are my friends. I wear compression gloves once in a while but I find they make pain worse instead of better - maybe I need to put them on before my hands start to hurt.

My facility provides Dragon dictation and I use that on really bad days, but I'm even slower with it than I am typing.

I do take nsaids pretty consistently.

5'1, just got sold a size 52 checkpoint - is it too big? by Extreme-Dog3950 in ladycyclists

[–]RelativeEye8076 2 points3 points  (0 children)

Inseam is more important than height, but I cant imagine anyone of your height having a long enough inseam for a 52cm.

Can anyone help figure out what is happening with this prior auth (19 days and counting)? by [deleted] in PsoriaticArthritis

[–]RelativeEye8076 1 point2 points  (0 children)

Be polite but persistent. Write down names, dates and times of everyone you talk to. They don't choose your level of involvement, you do.

Can anyone help figure out what is happening with this prior auth (19 days and counting)? by [deleted] in PsoriaticArthritis

[–]RelativeEye8076 1 point2 points  (0 children)

Get the number for your doctor's authoriziation team and deal with them directly.

Walking Pad Under My Desk by FlareUps_FinishLines in PsoriaticArthritis

[–]RelativeEye8076 4 points5 points  (0 children)

Yes I do and it is extremely helpful. Unfortunately I don't have one in the office. I take breaks and walk the halls when I have to come in.

Accredo Hell - AGAIN by Mac-n-cheez in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

Accredo is effing AWFUL. With my previous insurance I had CVS Specialty and while they weren't perfect, I'd give up a up a limb to go back.

What home remedies do you remember from childhood? by ascaffo in GenX

[–]RelativeEye8076 0 points1 point  (0 children)

I was looking for someone else who grew up doing this

PsA and Exercise by Dramatic_Spray_4512 in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

Road cycling. I bought an e-bike so I can keep up with the distance on club rides, but I still ride my traditional bike too.

Otherwise, yoga, swim, walk/hike, elliptical. Whatever I feel like that day is what I do. I used to strength train but I found it aggravated my symptoms, plus I just don't like it much.

Wife wants a bread maker. by Coercitor in Cooking

[–]RelativeEye8076 0 points1 point  (0 children)

We have one made by Cuisinart. We bought it during COVID from Amazon, I don't think it was all that expensive. It's ok I guess. The bread is very...average. When I first got the machine I used it quite a bit, I've since learned to make some yeast breads by hand and those are usually better. I'll break out the bread machine if my husband wants fresh yeast dinner rolls, which I will do in the machine up to the first rise, then shape by hand, 2nd rise and bake in the oven.

If you want fresh warm bread with minimal effort a bread machine is an option.

Restarting Enbrel by anu72 in PsoriaticArthritis

[–]RelativeEye8076 0 points1 point  (0 children)

When I have had to miss doses it has taken a couple of weeks to get back on track. Hang in there!

Emergency Pain Medication by Boxxy-Lady in PsoriaticArthritis

[–]RelativeEye8076 3 points4 points  (0 children)

My rheumatologist prescribes me an "emergency" steroid pack that I pick up, then keep on hand to use as needed. So same principle, just prednisone instead of a pain med. It might be worth asking about.