Viewing a single comment thread. View all comments

dmf109 t1_iu7cfgj wrote

I have psoriatic arthritis. Not fun. It’s a weird disease; one day I have crippling pain in hands and feet, then another no pain at all. Weird too: getting up in the morning hurts like hell, but it can be gone in hours after using the joints. I just did some jogging, then had nearly a week with no pain. Such a strange thing.

33

Snake57 t1_iu85nsf wrote

You are describing my exact symptoms, but I haven’t gotten any diagnosis yet. One day I feel like I’ve lost like 50-60% of my grip strength, the next it seems fine (I have Psoriasis as well).

I used to weightlift pretty intensely for a while about 8-12 months ago and figured I just overdid it, but the pain never went away after I stopped because of it.

I have an appointment at a Rheumatologist soon in the hope that they can figure out what’s wrong.

Can I ask what they checked to diagnose it? What did they suggest for treatment? Have you noticed anything helping, or making it worse?

Sorry for the many questions, your description just hit the nail on the head for me, and I’m just hoping to be able to find some kind of treatment.

Thank you for sharing!

15

dmf109 t1_iu8gti4 wrote

Mine started as psoriasis back in 2011. I had patches on my legs and scalp. It was annoying, but manageable. I also had frequent pain and swelling in one pinky toe, with on/off hip and wrist pains. I was also a heavy drinker.

I started doing a lot international work with lots of travel and stress. I was in a hotel room hungover one morning in the fall of 2014. I woke in lots of pain. Both feet and ankles were swollen. Most toes were stiff and swollen. I started getting pains in various joints.

I got back home and saw a doctor. They diagnosed as psoriatic arthritis due to my psoriasis and the swelling of toes.

I went on methotrexate first. I also stopped drinking (8 years yesterday). The methotrexate knocked down all the swelling and eased some pain, but did nothing for the psoriasis. That was fall of 2014.

Sometime in 2015 I switched to Enbrel. At that point, I still had skin issues and lots of pain, but little swelling. The Enbrel seemed to help a little, but really not much, and also did nothing for my skin.

In 2016 I switched to Stelara. That helped the pain AND completely cleared up my skin. No more swelling, but still morning stiffness and occasional flareups of pain.

About 3 years in, the Stelara just stopped working. My skin was always great, but my pain and stiffness increased, especially in the morning.

I switch to Cosentyx in December 2019. That felt like when I started Stelara, but even that has stopped being as effective. I have some skin issues on my scalp now and the arthritis can be severe in the morning. I’m looking at options for what I can do next.

I find exercise helps a lot. Mornings are horrific, with intense pain in feet and hands. But it goes away as I move. But sometimes the pain lingers all day like a toothache.

My plan now is to exercise more and stretch. I’ve found stretching at night right before bed helps with the mornings.

It’s a scary disease in how variable it can be. It really makes me wonder how much time I have left.

14

tankuall t1_iu9uwv1 wrote

Do some reading on Tremfya. I've been on Humira and Cosentyx. Humira only provided marginal improvements, so I switched to Cosentyx, worked great for about two years, then stopped working. So far Tremfya has been working great for a year and has provided me with much more relief than the Humira or Cosentyx. Definitely worth looking into.

2

Maleficent_Soft4560 t1_iu96w75 wrote

For me, my PA was made worse by taking anti-inflammatories (e.g., ibuprofen, NSAIDS, methotrexate, etc.) They would work, but when they started to wear off and it was time for another dose, the inflammation was debilitating. It got to point where I had to take the medication right before bed and get up early before it wore off, otherwise it was a struggle to get up in the morning to take more medication. Well, I worked with my doctor and got off the medications and started making time for light exercise (e.g., going for a walk) everyday. I also looked for ways to reduce stress and not sit at a computer all day. I also started applying nail conditioner to fingernails and toenails because I also have the nail issue with psoriasis. I started doing these things about 15 years ago. I’m still dealing with the psoriasis, but the PA doesn’t give me much trouble these days. If I do have a bit of a flare up, I try to think back a couple days and figure out what may have triggered the flare up and try to adjust my routines to avoid the triggers. The biggest part for me was actually getting off the anti-inflammatories. I know it won’t work for everyone, and you should consult your doctor before altering your medication plan, but it did work for me.

3

FlamingButterfly t1_iu96cub wrote

I have been having almost the same exact issues, I have days where I hobble around at work and then a few days later I'm fast walking everywhere without any pain. I described it to my doctor as being like waves, sometimes it recedes but it can come back hours or days later and this rash near my eyes isn't going away but at least it hasn't flared up as bad.

After getting minor improvements with the rash and no change to the pain when it shows up I'm finally convinced to tell my rheumatologist since he already treats my fibromyalgia.

3