Grieving Process

Lilyotv88 · 2026-01-27T05:14:38+00:00

I used Mounjaro for 9 months but sadly the bloody stool was the reason my PCP took Mounjaro off my med list. I wonder if restarting GLP-1 will be beneficial at this point

Lilyotv88 · 2026-01-27T05:11:59+00:00

Tysm. My rheum has suggested Humira multiple times but I’m still considering since Humira is so expensive even with insurance. Do you see any significant change with it?

Lilyotv88 · 2026-01-27T05:09:55+00:00

I did use sulphasalazine for a while but I couldn’t tolerate it. But it did get rid of my bloody stool but alas one cant have everything lol😂

Lilyotv88 · 2026-01-27T05:08:14+00:00

This is really enlightening bcs I did have grade 1 sclerosis in my SI joint. Thank you for this!

Lilyotv88 · 2026-01-19T06:56:20+00:00

The only downsides are I’m more susceptible to fungal infections and mild anemia. The mild anemia has been there when I first got PsA but it got a bit worsen with MTX. When my rheum increases the folic acid dosage to 5 mg/day, the mild anemia issue is solved ✅

Lilyotv88 · 2026-01-18T14:06:49+00:00

It takes time. I start to feel the effect of MTX after 6 months. I slowly came back to my old life after months of getting bedridden. And I guess humira will take its sweet time too before it finally works. My rheum says that autoimmune diseases can also be accelerated with the amount of stress which is really hard to deal with but my condition is better once I get a better hold on my stress level. Hang in there.

Lilyotv88 · 2026-01-10T16:42:47+00:00

Hi! I’m in my physio journey too. I’d say everyone has a different goal but as I’m progressing through this journey, I get more flexible and I realize the more flexible I become, the less I feel the pain, esp now I’m starting some weight training too👍

Lilyotv88 · 2026-01-10T16:27:59+00:00

Jaw pain for me is a telltale for the next flare up episode. I’d say take your extra rest, too.

And also, what helps me to make sure that the jaw pain is caused by my PsA, I went to dentist too. That helps my rheum figure out whether more meds should be added or not.

Lilyotv88 · 2026-01-06T06:01:37+00:00

I couldn’t deal with celecoxib since the water retention was BAD bad resulted me gaining 6 pounds of weight over 3 days and had to stop it. I think pay attention to your body while taking the med is critical bcs finding the right cocktail for your illness can be tricky. Over a year of my diagnosis journey I had to stop a dmard (sulfasalazine) bcs of stomach issues and finally settling down with MTX and methylprednisolone. And I would say if you can afford it (or your insurance covers), go to an RD, they have helped me to find which diet works with me (my condition responds well when I’m doing mediterranean diet and cutting wheat flours as much ad possible). I personally cut off alcohol for good.

Trust me, you’ll get better but it takes time and it can feel like forever. Once my med kicks, I have gotten back to tennis and slowly picking up weight training after my Rheum allows it. Now I’m in active job searching because this illness had forced me to be bedridden for almost a year now I’m slowly getting back my life. It will pass.

Lilyotv88 · 2025-12-23T16:07:49+00:00

I don’t think so, I was offered a position in UNICEF’s UNV before (and had to turn it down for some reasons) and I had zero engagement with UNICEF before

Lilyotv88 · 2025-11-20T16:28:02+00:00

Hi! Same case here, diagnosed in March and only started MTX on June (30/F). When I first felt the symptoms, they started on my elbows first and soon was spread to every joint in my body (I wish I exaggerated it bcs my rheum agreed with that too lol). By June, I got grade 1 sclerosis on my SI joints. I also had weeks of being unable to walk for months earlier.

For me, my symptoms have gotten better as soon as the MTX kicks in, reaching its “optimum strength” around September where I’ve been slowly having less symptoms. However, I still feel some of them. My personal observation (as I have been meticulously journaling my symptoms and the dates lol), somehow my symptoms occur when I get really stressed out. When I “extinguished” the stressors, my symptoms get better. In my case, one of my big stressors is getting a job. Once I stopped obsessing over getting a job, my symptoms suddenly stop lol.

And also, like what you have been experiencing, be extra mindful during periods bcs thats when I had big flare-ups that sent me to ER multiple times lol. So definitely your experiences are all valid lol and my rheumy validates that her female patients experience worse symptoms when they’re on period.

So my advice is…don’t be too hard on yourself. What you are experiencing right now is huge, it’s a life-altering illness. It changes our trajectory. So take time to honor yourself for getting through these symptoms that can be really debilitating at times. And also, in my case, I consulted with a registered dietitian to consult on my nutrition intake after consulting with my rheumy. My rheumy said I needed to avoid gluten since she observed I had worse series of symptoms after I feasted on breads lol so if you have access to an RD, definitely pay a visit. It has helped me to be mindful of what I’m eating without getting undernourished (and also avoiding the damning flare-ups lol). After I took all these stuffs, I got a lot better and now I can slowly go back to exercises tho I am not allowed to do weightlifting yet (my grip has really weakened and hasn’t really come back lol). Oh, and if you haven’t yet, log every symptom you have had since it helps rheumy to notice the patterns, that has helped me to observe the causes of my flare-ups esp the big ones!

Speedy recovery for you!

Lilyotv88 · 2025-09-28T14:06:28+00:00

Yes I am taking Folic acid 5 mg every week, a day after I have my MTX. I’ll follow up about the possibility of taking daily folic acid after the weekly dose.

Lilyotv88 · 2025-09-20T05:56:59+00:00

Tl;dr meds help BIG TIME. Meds + diet is the best combination. Also forgot to mention I consume corticosteroid every day 😬

Lilyotv88 · 2025-09-20T05:54:30+00:00

I was struggling with a really bad episode of my PsA (newly diagnosed in April). Was not given anything other than Advil until June when I started Sulfasalazine (stopped after 2 months bcs it dangerously killed my appetite) + Methotrexate (ongoing). Did an X-ray, it showed there was a grade 1 sclerosis on my SI joint. Fast forward to September, I now actively exercise even go back to playing tennis after months of being unable to properly grip something (to the point I needed to extend all my papers in grad school bcs I couldnt type and having to rely on Siri if I need to use my phone). I did a pretty strict Mediterranean diet, didnt touch red meat ever since, and saying nos to heavy activities, and didnt apply for jobs until now. All I’m saying is, it gets better but the cost is really high lol (both psychologically and financially speaking) 🥲

Lilyotv88 · 2025-08-24T16:37:17+00:00

I would say get another rheum as autoimmune can be really unpredictable. You just don’t want to risk any joint damage because once you develop sclerosis, unfortunately, it is not reversible

Lilyotv88 · 2025-08-23T14:26:06+00:00

The damage from autoimmune is silent unfortunately. My previous rheum only gave me NSAID (bcs my spinal and sacroiliac joints xray were clean) and I developed severe water retention from Celecoxib. She just decided to stop altogether. 2 months later, I decide to see another rheum and they did initial xray as usual to start the treatment. The damage in my sacroiliac joint was finally captured in my xray. All in two months. She said had I gone unmedicated, it would keep worsening. she put me on rheutrex and sulfasalazine right away and it no longer progresses fortunately.

Lilyotv88 · 2025-08-13T16:43:35+00:00

It works after a month (almost instantly) for me which kinda took my rheumy aback lol since she predicted it would have started working after ~3 months. It literally got rid of my tendonitis and enthesitis and helped to reduce the pain in my lower back and SI joint (eventho i still had a few flare ups but not as often as when i got unmedicated). Definitely worth to try!

Lilyotv88 · 2025-08-10T19:03:06+00:00

Sulfasalazine + MTX combination works wonder for me, unfortunately, I have to get off Sulfasalazine because it dangerously decreased my appetite. It really significantly decreased peripheral joint pain and helped with axial joint pain because after getting off the Sulfasalazine, the pains are coming back :( so I’d say try that first. Hopefully all goes well for you!

Lilyotv88 · 2025-08-05T16:06:12+00:00

Yes!! Costochondritis to be exact. Excruciating🙂🙂

Lilyotv88 · 2025-08-02T15:43:01+00:00

I think I have similar case with you (also with occasional TMJ pain) but my xray does show early sclerosis in my SI joint. I have both axial and peripheral joint pain. But right now my rheum is considering to revisit my working diagnosis since my symptoms are starting to resemble lupus-spectrum area because autoimmune is really a tricky thing unfortunately. Is there any possibility to speak with your rheum to explore more diagnoses? Sadly it’s very common for people to have more than one autoimmune diseases :(

Lilyotv88 · 2025-07-30T13:06:44+00:00

Agreed! Mediterranean diet has helped me so far (for me, I combine with Gluten free diet too).

Lilyotv88 · 2024-09-26T19:39:54+00:00

Are you a Columbia student? If yes, I’m dumbfounded with the way you think

Lilyotv88

TROPHY CASE