u/ohamango

Hi guys! I 19(F) got diagnosed with PsA back in April and since then it has been trial and error of so many different medications.

We finally got to the methotrexate or biologics conversation, and my rheum and derm teamed up to provide a lengthy reasoning as to why they want me on biologics.

Insurance basically said "I don't care." We tried appealing, denied on appeal flat out because I didn't do methotrexate. So, I'm on methotrexate now for the next 3 months. My rheum said its a 50/50 shot if it works, but my worry is the side effects. Especially hair loss.

My hair is the one thing I feel I can control in my life about my appearance. Even if I feel like absolute shit, and my world is collapsing, at least my hair is pretty and looks good. When my hair is good, I feel better. I've been trying to grow it to my tailbone and I'm about 5 inches away from my goal now, with healthy dense shiny hair. Maybe I'm too vain, but honestly I don't care. I'm devastated. I'm so worried my hair will fall out and turn into a wispy ugly mess because of insurance being greedy. Just another thing being sick will have taken away from me.

Some days I just feel so ugly with my nails peeling in layers, my skin inflamed and dull, etc. Losing my hair would honestly just push me over the edge into a full blown "woe is me" mental state which I've been trying very hard to not let take over me.

I am on folic acid pills daily to supposedly help combat this but I've read in other forums that sometimes it doesn't matter and your hair will still fall out, you'll still get painful ulcers, etc. Even on a low dose like I am (10mg to start, then 15mg for two weeks, then final 20mg dose until 3 month check in).

I need some support, or advice, or reassurance it'll be okay and if my hair is falling out I can beg to stop the med and say side effects are too bad and insurance won't be an asshole about it.

Basically whenever my PMDD rolls around I become extremely irritable, but also very lonely and depressed and I feel the need to express it and suddenly I've launched into a 2 hour long vent about how alone I feel and how I worry I'm not worthy of love. Every. Single. Month.

Obviously, not good. Very draining on my friends and I can tell they don't want to say anything because they know I have PMDD and I warn them beforehand I'm having a PMDD episode. But its like the words just vomit out of me and I can't stop myself and suddenly I've been venting for 2 hours about the void of loneliness.

And I'm really truly not like this outside of my PMDD. I don't vent that often beyond my PMDD, I don't feel that intense loneliness that feels like someone shoved a knife in my stomach, I don't slip into depressive rants. Outside of PMDD I'm a cheery, funny, giggly, snarky, relatively confident person. But the PMDD just forces me into this low self esteem depressive monster 😭. And when the PMDD goes back into hiding until next time, its like I snap back to reality and none of the emotions I was feeling before show any signs of still being there.

I've tried basically hibernating when the PMDD comes but disappearing for a week every 3 weeks isn't exactly helping my friendships. Even when I explain the reasoning, my friends they truly understand, but its just so frequent it creates distance.

How can I stop this? I don't want to be a burden to my friends, and I don't want to keep creating further drifts apart from hibernating. How can I keep it under control enough to not lament like I'm sadness from the movie Inside Out to my friends every single month this happens.

If relevant:

- I am on zoloft 50mg daily

- I am on vestura (have been for 4 years)

Hi guys! So I've been noticing I basically have 2 PMDD episodes every month. The first episode is like a mini, 2 day long episode and then I return to my baseline about 1 week after my period. And then the other episode is the typical "I'm in luteal phase" episode.

But from what I know, PMDD is only supposed to "flare up" for lack of a better term when you are in luteal phase. But I've noticed this consistent pattern of feeling the same emotional rollercoaster, sense of dread and overwhelm, insecurity, loneliness, etc. for those 2 days as well as during the time I'm "supposed" to. And it happens every single month reliably.

Does anyone else experience this "mini episode"?

If it is of any importance, I am on birth control (Vestura) and have been for 4 years.

In February I bought Angham, figuring it was worth the risk since everyone raved about it. At first spray, I wasn't thrilled. I wasn't getting any vanilla and was instead getting lots of citrus. But I read online to wait 2 months for it to macerate.

2 months go by, and it smells nice, but not quite what I expected. I forget about it.

I just sprayed it yesterday because I was curious and holy cow. It has transformed into one of the most gorgeous vanilla scents with good projection and some NICE lasting power (9 hours on skin for $40? For a full bottle? Hell yeah). The vanilla is this gorgeous mix of warmth and sugar and kind of reminds me of a cookie with vanilla extract in it.

The lavender is much more subtle than what it once was, now helping to amplify the vanilla instead of being a main character in the perfume.

This went from a 5/10 to a 10/10 for me.

So let this be a PSA: TRUST THE PROCESS. Letting it sit for 4 months is absolutely worth the wait.

Hi guys! So I just got diagnosed with PsA a few weeks ago. I do not have scalp psoriasis, but I do have active psoriasis patches on my neck and my legs. Currently trying to get this active flair under control.

So far, I've been on 3 different topical steroid creams and for pain I've been on meloxicam and naproxen but each of them caused some problematic side effects so I'm going to be put on a biologic soon.

But I've noticed within the past week or so, my hair has gone from needing to be washed every 3 days to every single day. My hair just suddenly is getting so greasy. I used to need to wash it every other day for awhile, but never this much.

I've tried washing my hairbrushes, doing a double shampoo cleanse with my shampoo I've been using for months with no issue, switching my pillowcase-- and nothing. I have not added new products to my hair routine since January, which if its relevant is when I started getting my PsA related joint and ligament pains (likely spurred on from Mono which I got this past late august/early september).

Is this because of the PsA? I don't see any plaques or dandruff. Has anyone else had this problem? Have you been able to get rid of it? Its very annoying to need to wash my hair daily as it is pretty long right now. And while it is fine in individual thickness, it is dense so it is heavy on my neck when I wash it.

Idk what Rhode put into their peptide lip treatment vanilla scent but god I long for a perfume exactly like it. Fluffy, a touch warm, just like diving your nose into a freshly baked vanilla cake with no frosting on it.

Everyone says its so easy to find a vanilla cake fragrance, that its been done hundreds of times, yet I've been scouring the internet for days and... nothing?? Everything is either floral, citrus, spicy, boozy, cold, marshmallow, sugar, butter, but not straight forward vanilla cake like the Rhode treatment? I need help 😭 I've gone through over a hundred pages of different fragrance scent websites and I'm lost at this point.

REQUIREMENTS:

- No citrusy, beachy, floral, boozy, spicy, herbal, aquatic, ozonic, or woody vanillas It has to be pure vanilla cake.

- No scents that are "cake batter" or "sugar cookie" or "vanilla buttercream frosting" or "vanilla ice cream." I know I'm being hella picky here, but it needs to specifically be vanilla cake.

- On that note, not chocolate cake or carrot cake or lemon pound cake either. Kinda defeats the purpose of my search haha!

- My budget is preferably under $100

- Must not be discontinued/hard to find

I'll list the ones I've smelled before and why they are a "no" from me!

Solinotes Vanille: Smells like alcohol & cotton candy on me. Not a fan.

Outremer Vanille: Cotton candy, not vanilla cupcake. The only perfume I've ever said is too sweet on me haha!

Philosophy Fresh Cream Warm Cashmere: Smells good, but like if I heated up sugar. Not vanilla cake.

Dulce Rosie Jane: Vanilla ice cream. Too cold smelling. Good for smelling like I am a walking ice cream shop though, I do enjoy it!

Nemat Vanilla Musk: Smells more like marshmallows, not like vanilla cake. Still like it though.

Kuumba Made Vanilla Bean: Also more vanilla ice cream which is nice but not what I want, and too cold smelling.

Kayali Vanilla 28: Smells very boozy to me, too heavy and more like vanilla extract than vanilla cake. Yummy, but not what I'm looking for.

Nest Madagascar Vanilla: I get a stinkbug note? This sometimes happens with perfumes with coconut notes for me. So unfortunately its a no from me.

Athena Club Golden Vanilla: Would be close ish if it lasted more than 5 minutes on me 😭. Smells yummy but it doesn't last at ALL even when I practically shower in it.

Being Frenshe Vanilla Cashmere: I don't know what it is but something in this smells like unmixed chemical. Like a smokey burnt chemical.

VS Bare Sueded Vanilla: Smells like almond & is lactonic, not at all vanilla cake. Smells similar to phlur cashmere skin!

BBW Vanilla Bean Noel: Smells too cold and also very candy like? Not a fan.

BBW Warm Vanilla Sugar: smells identical to fresh cream warm cashmere. More sugar, not vanilla cake.

Summer Fridays Sunlit Vanilla: Smells like my bianco latte got a stinkbug stuck in it (coconut note D:)

Bianco Latte: Caramel macchiato for sure, delicious, but not vanilla cake!

Notes I struggle with:

- pink pepper turns into a pepper BOMB on me so I can't do things like phlur vanilla skin because any vanilla would get immediately overpowered by the pepper holding onto my skin as if its a lifeline

- coconut, as I mentioned above I often smell stink bug D:

- citrus tends to smell like cleaning products on me. I smell like windex if I put on D&G Light Blue

I am practically begging at this point, praying someone has the scent I'm scouring the internet for so I don't need to spam Rhode's email begging them to release their vanilla scent from their lip balm as a full perfume.

Rhode's vanilla scent in their regular peptide lip treatment (no color) is my perfect idea of a vanilla. Its sweet, light, fluffy, pure vanilla (no citrus, no sunscreen, no aquatic, no spicy, etc.). Does anyone have anything that smells like Rhode's vanilla? Budget is under $100.

Other vanillas I've tried and brief thoughts:

Kayali Vanilla 28: good, but very very boozy on me. Very deep and heavy.

Kuumba Made Vanilla Bean: yummy but doesn't last long enough on me (~1 hour)

Nemat Vanilla Musk: smells like marshmallows and less like a true vanilla

Outremer Vanille: Just smells like cotton candy on my skin :/. Not what I'm going for.

Rare Beauty: Pepper explosion. Only pepper. I showered in pepper.

Bianco Latte: Coffee & Caramel. Delicious but not enough vanilla at all. Very heavy.

Philosophy Fresh Cream Warm Cashmere: Smells more like sugar than it does vanilla. A touch too sweet.

Athena Club Golden Vanilla: I can barely smell it 5 minutes later 😭. Yummy, a touch heavy.

VS Bare Sueded Vanilla: VERY creamy VERY lactonic-- smell more cashmere & almond than vanilla

Nest Madagascar Vanilla: stinkbug note??? It smells like stinkbug & vanilla I'm so sorry 😭

Summer Fridays Sunlit Vanilla: coconut, sunscreen, hint of vanilla, hint of stinkbug note. Surprisingly heavy feeling.

Sorce English Major: marshmallows, dusty old books, & a hint of tea? Not enough vanilla 💔

Dulce Rosie Jane: vanilla but very cold. Smells like ice cream, but not exactly what I'm looking for. Needs to be a bit warmer than this.

Lattafa Angham: Lots of lavender. Some vanilla, but not enough. Not sweet enough I think?

Phlur Cashmere Skin: almond, cashmere, and musk. Delicious but no vanilla.

Sorry I'm so picky 😭

Look, everyone can agree Jenna was majorly in the wrong. But I think Betul really showcased how sometimes even people who make massive mistakes need a bit of empathy.

Honestly, this entire season Betul has been a stand out for me... precisely because she doesn't cause drama and just does her work. From what we see she's kind to everyone, she's empathetic to others, and she's a hard worker. She doesn't purposefully spread gossip to others or make up rumors thus far.

It's just refreshing to see someone on the show act like an actual adult. Does it make for excellent content? Eh. But it kinda restores my faith in humanity 😂

Does anyone else periodically experience super intense lower back cramps? Full on wind being knocked out of you its so painful, intense pulsating throbbing feeling without heat, and all you can do is curl into a ball and wait the 5-10 minutes for it to pass?

Kinda reminiscent of period cramps in the type of pain for anyone who's experienced that. But it is so much worse than my normal cramps, and I have a history of them being so bad I can't get out of bed. It even happens if I'm not on my period, and its random with no pattern of specific times during my cycle so it can't be ovulation.

I'm wondering if this is related to PsA, so any experiences/input/theories would be appreciated!

Context: just got access to my patient portal, turns out my rheumatologist DID diagnose me she just didn't tell me verbally haha.

TL;DR went to rheumatology, got labs and xrays, all normal except for elevated CRP. Am now anxious I will be dismissed as "anxious." Has anyone else experienced this and still received a diagnosis/treatment?

I fortunately was able to get in to see the rheumatologist early, and she ordered some x-rays and labs. I had a negative ANA this past september so she did not retest that, but she tested rheumatoid factor, sed rate western, a CBC, sjogren's antibodies, another thingy for rheumatoid, c-reactive protein, and HLAB27 antigen.

The x rays (feet, hands, lumbar, cervical, sacroiliac, and shoulders) came up fairly clean. I've got mild scoliosis and one very slightly degenerated disc in between L3 & L4.

The labs, same thing. I've got an elevated CRP which I've had for years, and the rest was completely normal.

During my rheumatology appointment, she said I was a complicated case and it wasn't clearly anything. Even despite the confirmed psoriasis, and I showed her pictures of some joint swelling I've had (ankle & fingers) but since it wasn't dactylitis it wasn't definitive. She in the mean time has given me meloxicam to help with the pain, and it has definitely been working for the most part (my hip is still bothering me in the lower back/upper buttock region with dull hot achey pain, tried muscle stretches but nothing worked).

But I'm honestly just so anxious I'm going to be dismissed as being "anxious." Don't get me wrong, I'm so so so glad I don't have any permanent joint damage or anything. But I am constantly afraid of being dismissed especially since that is what happened when I was 15 and experiencing other symptoms due to other conditions. This rheumatologist was a lot better and took her time listening to me jotting things down and actually feeling my joints and such.

I guess what I'm wondering is, do you think based on these results I'm likely to get written off? Or has anyone here had a similar experience but was still diagnosed and treated?

Sorry I didn't know which flair to choose, so I chose vent because I am largely complaining/anxiety dumping.

Tl;dr: I need advice from people who have been on immunosuppressants while in higher education & how that impacted them.

Context:

The rheumatologist had a cancellation so now I'm seeing them this Monday instead of in a month, which is great. I'll finally get answers and see if I'm dealing with PsA (which due to my family history and confirmed psoriasis+ joint pain... seems likely).

But, I'm a bit nervous about medications**.** Specifically, immunosuppressant medications. I'm a college student, which means I'm interacting with tons of people in closed spaces daily. I'm worried that if I go on an immunosuppressant, I'll get sick even more frequently than I already do and more severely.

And then I could fall behind on my schoolwork, even in spite of the accommodations I have (due to other illnesses). And of course the financial aspect of getting sick all the time sucks. My parents would pay for everything (I'm very lucky and grateful), but I don't want to be a financial burden on them more than I already am (especially since I cannot work at the moment, most jobs for 18 year olds are not chronic illness and disabled friendly).

I know I should bring this all up to my doctor, and I will if or when that time comes. But in the meantime, can anyone who has experience with immunosuppressants and being in higher education give me some wisdom or advice? Am I being too anxious over this?

Hi guys! Sorry if this is the wrong flair. While I wait for my rheumatology appointment, I have a question about one of my biggest struggles: food. How are you guys cooking for yourselves?

I'm always in too much pain or too exhausted to cook. It takes so much energy out of me... and even worse, I never know what to make. Especially because some of the "easy recipe ideas" contain fish which I cannot stand (I literally gag at the smell, any marine animal doesn't matter) or tree nuts which I'm allergic to.

I'm 18, and need to learn some recipes to make for myself rather than relying on frozen meals like I did this past semester in college (frankly, I am sick of them). Especially since I need to get more protein in my diet due to being insulin resistant.

So, please share your best recipes, helpful tips, etc. to cooking while super fatigued or in a lot of pain. Anything without fish or nuts would be greatly appreciated too.

Long story short: for years whenever I get especially "flarey" (though I didn't know what these flares were caused by), I would get a bright red rash across my cheeks.

It is very hot to the touch and ONLY appears on my cheeks. It does not last more than a day at a time. There is no texture to it either. I basically look like I MASSIVELY over-applied blush. Usually, other symptoms soon accompany after the rash appears (extremely overheated, fatigue, and pounding headache are the ones that almost ALWAYS follow). Seemingly, there is no pattern other than the pain and fatigue that follows this rash.

I'm wondering if this is related to potential PsA, or if it is perhaps a different condition which I am diagnosed with (for those curious, it is MCAS). So, does anyone else have a similar story/rash? No worries if not, it could easily be that other condition I mentioned. But, I'm curious!

Man the past 24 hours have been hectic. Long story short, I was doing a sleep study and got a call that my skin biopsy came back positive for psoriasis and psoriatic arthritis runs in my family. So I gotta go to rheumatology now to see about psoriatic arthritis since I've been having some intermittent pains in specific spots around my joints that feel like deep hot aching.

Any tips/advice and things to be aware of?

I'm a bit anxious admittedly since I went to rheumatology as a child when I was dealing with undiagnosed ehlers danlos syndrome and they were incredibly rude. Accused me of lying for attention then tried to get me to sign up for an AMPS (which I do NOT have) torture program. I'm going to a new rheumatologist now of course, but I am still a bit on edge since my last experience with this department was not fun.

Just got my results back. Feeling incredibly discouraged. No SOREMPs, latency of 19.3 minutes, only fell asleep for one out of the four naps.

I was still on my Zoloft during the test.

The PSG showed a poor sleep efficiency, 56%. Had 12 periodic leg movements, subclinical for anything there. No sleep apnea. Normal amount of deep sleep, 25%.

From the data, there is no reason I should be so tired I feel the need to sleep in the day beyond "poor sleep efficiency." But there is no reason in the data why I have "poor sleep efficiency."

I am honestly so defeated right now. This was my last resort in hopes to fix my constant tiredness. My follow up with my doctor is in a month. I guess we'll see what happens there.

EDIT TO ADD:

I just received skin biopsy results and was diagnosed with Psoriasis. I have active patches on my legs and my legs were cited as being the source of 17/24 awakenings. Psoriatic arthritis runs in my family. Which means I've got to go to rheumatology. But, this also could be a potential cause of the sleepiness. So, this wasn't a total loss haha.

I was very worried I wasn’t going to qualify since I was struggling to get to sleep way more than usual, but I did and I’m so relieved!

Now the hard part 🫠. I am planning on asking if they could tell me if I fell asleep for naps or not, fingers crossed they do.

Any last minute tips appreciated! Thanks all!

Edit: 3 naps down! I haven't lost consciousness I don't think for any nap but there are a few time discrepancies that make me wonder if I actually did fall asleep. They said 20 minutes if I don't fall asleep, 15 minutes if I do. Well for the 2nd nap it was 8+15 minutes when I was woken up. And this past nap it was 9+15 when I was woken up I think. Are those good signs I'm actually sleeping?

Edit 2: going home after 4th nap!! I’ve heard that’s a good sign for getting a diagnosis?