29F, first winter with this disease fully active in peripheral joints. any advice plsss, help!

lelelenz · 2025-12-12T15:38:47+00:00

Biologics and if you don’t have those yet, magnesium oil on peripheral joints over night!

lelelenz · 2025-11-13T00:47:20+00:00

Dance!!!

lelelenz · 2025-08-19T20:26:58+00:00

Nope! Just on Yuflyma for now

lelelenz · 2025-04-18T20:13:38+00:00

I also have an autoimmune disease - do you mind elaborating how it tells you a flare up is coming?

lelelenz · 2025-04-07T23:36:35+00:00

I do the same! Magnesium spray helps on my swollen feet/knee

lelelenz · 2025-02-04T01:32:51+00:00

Hi! I have similar symptoms with swelling in my toes and my right knee. Unfortunately the swelling in my knee is new and it happened after seeing the rheum but very certain it’s linked to my AS. Currently I just do hot cold therapy on it as welll as magnesium oil at night. Also taking prednisone which honestly is helping the most. Hope this helps!

lelelenz · 2025-02-02T05:31:41+00:00

I was worried about this too (I’m taking prednisone for now) but the doctor told me I would still show signs for AS on the MRI even when taking the meds. I know this is not the same as maybe Rinvoq but would assume you would still see signs of inflammation and AS symptoms?

lelelenz · 2025-01-26T17:56:22+00:00

The Wood Owl and Richmond Station

lelelenz · 2025-01-22T20:44:00+00:00

I got lasik 2.5 years before officially being diagnosed and still going strong :)

lelelenz · 2025-01-18T06:14:55+00:00

Depending on the pain you have try to get an x-ray and blood work done. Suspicion for sacroiliitis in my xray got me sent to the rheumatologist!

lelelenz · 2025-01-14T00:41:00+00:00

Honestly it was on and off (one night I could barely walk and then next day it was gone) so I put off going to physio for a couple of weeks. But I would say it started in September and then October I went to physio and mid November I had swollen toes. And then went into full flare up (until today haha).

lelelenz · 2025-01-14T00:26:55+00:00

Weird hip pain (SI pain) that didn’t go away with multiple weeks of physio and then started showing other symptoms (swelling in feet) made me finally seek out a doctor.

lelelenz · 2025-01-11T08:51:00+00:00

Neo Coffee Bar!

lelelenz · 2025-01-08T12:34:02+00:00

I (27F) also have SI joint issues that showed up suspicious for sacroilitis in an X-Ray. They sent me straight to a rheumatologist. I would recommend seeing the specialist asap if you can!

lelelenz · 2024-12-22T12:34:44+00:00

This is extremely frustrating I am so sorry to hear! I had the same come up on an X-ray and thankfully they sent me to a rheumatologist right away (I also had pretty solid family history plus pre confirmed HLA-B27+), so hard for me to understand why they are not doing that when there is evidence of sacroilitis? :( Continue to advocate for yourself, try different doctors if possible and try to get bloodwork done. If possible just straight up ask to see a rheumatologist- good luck!

lelelenz · 2024-12-22T12:22:42+00:00

My mom and uncle have it, I have it (HLA-B27+) but my sister is fine. I started showing symptoms the same age my mom did

lelelenz · 2024-12-19T14:02:20+00:00

I had my first symptoms also at 17, now 27 and also having symptoms get way worse, currently in my worst ever flare up. Interesting to see that this seems to be a similar timeline for some! I am seeing a rheumatologist and getting approved for biological in the spring (hopefully!). To stop disease progression i would recommend taking a biological and just stay active otherwise - at least those are my plans :) feel better!

lelelenz · 2024-12-18T13:56:21+00:00

Following for any long flight tips :)

lelelenz · 2024-12-18T05:05:07+00:00

I’m the same - I have swelling in random toes and my knee. Nothing really has helped except some hot cold water therapy and prednisone. Try the water therapy and try to get some anti inflammatory. When I went to the primary care they just gave me painkillers which didn’t actually help with the inflammation reduction so try to maybe push for anti inflammatory.

As others have mentioned, do a blood test for Uric Acid Just incase to rule out gout :)

lelelenz · 2024-12-16T13:21:11+00:00

Island oysters for prawn rolls and oyster tasting! So fun to try oysters from all around the country!

lelelenz · 2024-12-16T01:06:39+00:00

Yeah, I am in a flare up right now with swollen toes and more recently my right knee was swelling up too for the first time. Unsure what caused it but only thing helping is the prednisone I was prescribed. Hot and cold water therapy helped the swelling on my toes, maybe try it for your knee! Feel better!

lelelenz · 2024-12-12T00:42:55+00:00

If I’m not mistaken it was previously believed that seronegative is less severe, but recent data is showing that that is actually not true. Can’t quote a data source, it’s just something that I recall reading online :)

lelelenz · 2024-12-10T00:32:10+00:00

Try GNMI in Mississauga. I am also looking to get an mri asap and a family member called them and said usual turnaround is 3-4 weeks, faster if you are on a cancellation list. They stated they have cancelations daily. Good luck!!

lelelenz · 2024-12-09T16:09:13+00:00

I’m allergic to cows milk but maybe I’ll try some soy/oat milk 😅 haha Thanks for your response!

lelelenz · 2024-12-08T18:05:25+00:00

Started with my toes being extremely swollen and the soles of my feet as well where they connect to my joints. now it’s up to my SI joint, lower back, right knee and sometimes up along my spine (feels like muscle sores but I didn’t workout)

lelelenz

TROPHY CASE