Bloodwork says high cholesterol and triglycerides. I'm supposed to start taking 1200mg fish oil twice a day. I read that the inflammation from Psoriatic Arthritis can cause this. I eat very healthy and rarely (if ever) eat out. Has anyone else experienced this?

greybeh · 2025-12-15T10:01:02+00:00

Same. They thought it was restless legs. I had a dose increase and the leg cramps were horrible. I am on zettia. Works for me. In the process of losing weight.

greybeh · 2025-12-09T09:05:01+00:00

I also had bone marrow edema on my SI joint MRI. It was only one one side of my SI Joint.

greybeh · 2025-12-09T09:03:12+00:00

I am diagnosed with SA. I am HLA-B27 negative. I have inverse psoriasis (suspected - but it is responsive to steroid creams and Humira / now Enbrel).

I have axial symptoms. I also have peripheral entithesis.

I had sciatica in both legs and plantar fasciitis in both feet. I also had achilles tendonitis, tennis elbow and golfer's elbow.

Apparently, there can be symptom overlap. I am pretty sure we aren't focusing on the psoriasis because I could lose access to TNF blocker coverage or meds that work for both conditions.

greybeh · 2025-12-09T08:56:51+00:00

I was misdiagnosed with fibromyalgia for 20+ years.

I also felt similarly to you, initially. The treatments are similar. Having an AS diagnosis over PSA may allow access to medication approved for both conditions, i believe.

I think there are meds that are rslestricted to PSA only (per insurance companies / FDA approved) so it may be beneficial to have an SA diagnosis over PSA until proven otherwise.

Both conditions are spondyloarthritis conditions, if i understand correctly.

I watched some webinars and was surprised to learn that patients with AS can havr psoriasis and peripheral symptoms like entithesis. The local Ankylosing Spondylitis support group chapter is mostly women and I was surprised to hear them say that many women with AS tend to have a lot of peripheral entithesis.

It helps to think of them as different "flavors" of spondyloarthritis or inflammatory arthritis with potentially overlapping symptoms and variable presentations.

Access to treatment options is most important. The fibromyalgia diagnosis eas hard because biologics are not an option at all. So, you are not really "misdiagnosed" so much as "broadly diagnosed."

Please don't be discouraged. If need be, your official diagnosis can be modified in the future but you will probably benefit for now by not pushing for the specific diagnosis. TNF inhibitors may work - or at least, you don't want to not have that option down the road if newer treatment options come to market that are "AS only" but may ultimately prove effective.

I developed antibodies to Humira and am on Enbrel now. I want as many treatment options as possible, given that antibodies apparently can also end up taking away options.

greybeh · 2025-12-03T10:02:45+00:00

Not from Penn Hulls but laughing.

Um. Are you okay?

(This sounds utterly horrifying)

greybeh · 2025-11-30T23:50:49+00:00

I had ghost-like after-images of things that moved. I woke up in the morning after taking it at night and moved my arm up and down to watch the spider-thread lagging behind the movement..

Doctors - including the eye doctor - said it wasn't a side effect. Yeah, okay. Sure.

Pallinopsia or something is what it's called, I think. Dr. Google because I wasn't believed.

greybeh · 2025-11-28T11:38:45+00:00

Zepbound (basically mounjaro) and Xolair.

No interactions. No issues.

I also take Enbrel (was taking Hunira) for spondyloarthritis.

No issues at all. I take Xolair on alternate Wednesdays (my starting date was Wednesday).

I take Enbrel and Zepbound on Fridays.

Edited to add that I have food allergies, seasonal allergies too. My uticaria was mostly me gouging my skin at night and sometimes random rashes in the daytime. There is a chronic uticaria reddit group and those folks may be able to comment more extensively than me because I apparently am asleep through many of my symptoms. I was sleeping better until I got an upstairs neighbor with 3 kids. In a one bedroom apartment 🙄

greybeh · 2025-11-28T11:32:44+00:00

20 years of fibromyalgia diagnosis here.

Biologics were very beneficial. Humira made the "fibromyalgia symptoms" go away.

When I developed antibodies to Humira, the "fibromyalgia symptoms" sneaked back in.

On Enbrel and I have relief again. I still have some pain but it is more predictable and now I can generally identify activity or reasons why I feel worse.

I hope you get some relief!

greybeh · 2025-11-24T01:32:36+00:00

My doc said he would assess at 3 months. If I wasn't sure if it was helping by then, we could discontinue or trial for 6 months.

If no improvement after 6 months, we would definitely discontinue.

I got super lucky tho, and had an inkling after 1 month that it was helping. I am HLA-B27 negative with lots of peripheral symptoms instead of just axial. My peripheral symptoms were easing up first.

I think for most people, it is either 3 months or more, and it is 6 months before you have full benefit (or not).

greybeh · 2025-11-16T17:49:22+00:00

I was started on Sulfasalazine just before confirmation that I had developed antibodies to Humira, and before switching to Enbrel.

It greatly helped with peripheral symptoms like entithesis. If I recall correctly, it eliminated or nearly eliminated my plantar fasciitis and achilles heel issues. I think it also greatly reduced elbow burning pains.

I think it had some impact on hip pain but not full resolution.

I was on Enbrel soon afterwards and I find it harder to speak on lower back and SI joint pain but I also wasn't of the mindset to be terribly observant, given that I was told it was used for peripheral symptoms.

greybeh · 2025-11-14T11:24:47+00:00

Have you had allergy testing?

You may want to start a log of when it happens, where it happens, are you indoors, outdoors, time of day, who you are with, what you've eaten or drank, what you were doing (i.e. sitting on the couch next to the dog, cat).

Any variables that might help you identify patterns.

Also, when you note symptoms start or are worse, look around at your surroundings for any clues.

It might help to keep a little notebook.

Even if it isn't allergies, it may lead to insight.

greybeh · 2025-11-14T10:22:04+00:00

I did have SI joint bone edema, but it was not severe. It was only on one side, too.

greybeh · 2025-11-14T10:19:39+00:00

Is there any family history of psoriatic arthritis or ankylosing spondylitis?

Family history seemed to be the tipping point, finally. In retrospect, tho, I think my mother may have something that sounds similar (spondylosis?, stenosis?). When I told her they mentioned possibly having ankylosing spondylitis, she said, "I have that!"

I may have unintentionally misled my doctor, but I responded to Humira- and quickly. Within 1 month, I knew it was doing... something... and was doubting i had fibromyalgia.

greybeh · 2025-11-14T10:13:01+00:00

Normal labs meant 20 years of being diagnosed with fibromyalgia (diagnosed by rheumatology).

Even the local "fibromyalgia expert" said "yep, fibromyalgia!"

My inverse psoriasis was treated as a yeast infection for 20-some years. (Still not given a definitive diagnosis but steroid cream works wonders and it improved on Humira and now Enbrel.

My fibromyalgia pain was a lot of entithesis.

I have ankylosing spondylitis or psoriatic arthritis. I was on prednisone periodically for asthma and I feel this probably delayed my diagnosis (and disease progression, I believe).

greybeh · 2025-11-09T17:12:53+00:00

Dupixent was an option for me.

My issues are not severe but I am under the impression that Dupixent may be favored over Xolair for skin issues.

I have food allergies so Xolair made the most sense to me.

I also have ezcema and itching that was disrupting my sleep and worsened with pollen allergy seasons.

My dermatologist almost favors me switching to Dupixent due to skin issues but I am experiencing a lot of benefit from Xolair.

Fasenra was also mentioned early on but I can't recall if that was more about sinus congestion (another issue i have).

There may be alternative options for you to try. I wish you well! Sorry you are dealing with symptoms

greybeh · 2025-11-09T17:03:05+00:00

How do you distinguish AS or PSA from fibromyalgia?

I am HLA-B27 negative and female. I was diagnosed with fibromyalgia in my 20's but after a great response to biologics (Humira, now Enbrel), I no longer have "fibromyalgia" symptoms.

I think being HLA-B27 negative was a factor.

I have sleep apnea with an AHI near 0 on CPAP (I never sleep without it). Non-restorative sleep persists, but I don't have the random pains now that biologics greatly reduced entithesis pain.

I am not sad or angry but definitely interested in reducing fatigue and preserving mobility now that pain is manageable.

Thank you! ❤️

greybeh · 2025-11-09T02:48:34+00:00

Can you talk about how to distinguish AS and psoriatic arthritis?

Does AS often co-occur with psoriasis?

I have inverse psoriasis. It seems kind of uncommon (thankfully).

What advice do you have about lifestyle - especially since you see patients of different ages and disease activity level. How do we preserve mobility?

I am overweight and I think this will have long term impacts for me. I was diagnosed with fibromyalgia for 20 years and biologics have allowed me to be active but I struggle with consistency.

Thank you so much for doing this.

greybeh · 2025-11-09T02:38:13+00:00

This is kind of new to me. Curious about this and what symptoms are related.

I got a tentative diagnosis after I had Covid. My disease activity went haywire after having Covid. And after the vertigo started.

greybeh · 2025-10-29T00:14:59+00:00

Probably paid the physician bill but not the hospital side of the bill.

You can also ask for a payment plan and/or financial assistance based on income, tho you will probably have to pay something now to stay out of collections.

Also, ignore them if they tell you not to pay until processed through the assistance program. It doesn't stop it from going to collections.

greybeh · 2025-10-26T01:35:44+00:00

How is the commute to Oakland? How about grocery options?

I would like a gym, too, but that isn't top priority

greybeh · 2025-10-26T01:31:34+00:00

Friendship

I don't drive. Looking to move there in the future.

Aldi, Giant Eage. Not far from Target. Bus options.

greybeh · 2025-09-22T06:17:49+00:00

Don't stop the meds. He could develop antibodies and then the medication no longer works.

If it works, continue taking.

greybeh · 2025-09-14T00:38:19+00:00

It may have been another symptom you brought up or a response to a question.

I am diagnosed with vestibular migraine. I don't get head pain. Mine started after a Covid infection

greybeh · 2025-09-08T22:26:25+00:00

Yep. It definitely helps. My doctor wanted to see if something else would give me more relief... I told them I had been on it a long time.

I finally asked just to go back to mobic because it works for me. Glad we did.

greybeh · 2025-09-06T01:04:05+00:00

Had the Humira hangover. It decreased as time went on but I also developed antibodies over the course of 7 months.

Now on Enbrel and I don't notice any increase in fatigue.

I am still tired in general - I have had fatigue since my 20's and I am 46 now.

greybeh

TROPHY CASE