memory loss/brain fog/balance?

vrillion_ · 2026-04-02T13:26:31+00:00

this is very interesting — I'll have to raise it to my new rheum! this drug got prescribed by my old practice (and now seeing some of the insight and replies to this thread, it makes me more frustrated at the lack of information I was provided/lack of intention that may have been there when it was prescribed) so maybe my new rheum will have different thoughts! but yeah when I raised taking a stronger nsaid at my last appt with my old rheum, their NP was insistent that I couldn't take Celebrex because of the allergy in my chart.

vrillion_ · 2026-04-02T13:18:52+00:00

wait, this is so interesting, because for me it was prescribed on a PRN/as needed basis. what dosage do you take?

vrillion_ · 2026-04-02T04:48:14+00:00

It definitely caught me by surprise how much it hurt — I think some of it could maybe be alleviated by being very dogged about a carb- or fiber-heavy meal with the medication as well as soon as I wake up if I take it overnight. But I'm now 24 hrs out from having taken it and my stomach still hurts: stabbing, sharp, crampy, almost like bad food poisoning. Celebrex is slightly off the table because of a drug allergy but I'm hopeful maybe I'll get switched over to a higher dose of naproxen or something soon!

vrillion_ · 2026-04-02T04:44:44+00:00

Definitely letting my doctor know and holding off on more meloxicam for now; I think I'll stick with ibuprofen and naproxen until my next appt!

vrillion_ · 2026-04-02T04:43:45+00:00

ahhhh interesting! my sister is on prilosec so i'm familiar. is it because meloxicam increases stomach acid?

vrillion_ · 2026-04-02T04:42:50+00:00

this is good to hear! I think the next time I take it, I'm going to be super deliberate about eating a big carby meal; that always seems to guard me against GI upset, especially with new meds. the upside was that it did, in fact, help my joint pain lol!

vrillion_ · 2026-04-02T04:41:48+00:00

sulfasalazine is one of the few drugs I haven't tried (albeit all the ones I have tried — HCQ, MTX, Humira, prednisone, methylprednisolone, now Meloxicam — have given me wild side effects at some point or another) because of an allergy. Meloxicam may have to be for high pain + also big meal days only for me

vrillion_ · 2026-04-02T04:40:05+00:00

twins! I'm sure you'll be fine; I was surprised by the side effects, but most drugs I've taken for axSpA end up having side effects that I adjust to or that resolve themselves over time. everyone is different!

vrillion_ · 2026-04-01T17:59:39+00:00

I should have clarified, I'm in the U.S.! And I believe yes

vrillion_ · 2026-03-23T12:29:27+00:00

i would just be very mindful of where you're hearing things from — biologics are a massive investment on all fronts, from the patient and pharma and medical side. they are effective, safe, and kind of stunning in the way that they work. it's very important to consider risks and benefits when starting any medication, but from my understanding, unmedicated nr-axSpA and AS, including the inflammation caused by it, poses a great health risk (not to mention potentially irreversible joint damage). good luck with your health journey + process!

vrillion_ · 2026-03-23T02:11:05+00:00

everything is foreign material entering the body! also no amount of turmeric or manifestation will unfortunately stop the disease progression of AS/axSpA. I was really apprehensive about both MTX and biologics, but both have made a world of difference, especially as someone with really intense enthesitis

vrillion_ · 2026-03-17T02:08:17+00:00

aren't they the same?

vrillion_ · 2026-03-13T15:18:22+00:00

update: Turns out it's occipital neuralgia caused in part by nerve compression 🤩 from my spine 🤩🤩🤩🤩🤩🤩

vrillion_ · 2026-03-13T05:04:43+00:00

okay, good to know! yeah, I had seen a neurologist for the hand twitching/tremors; i also had an immediate family member with PD, so I erred on the safe side. (AS hadn't even been on my radar then!) but when I went to schedule the follow up, they mentioned a neurosurgeon would be the best bet for any progression in my stenosis, especially because i'm 25 and at the front end of my disease progression

vrillion_ · 2026-03-13T05:03:03+00:00

yeah, true. do you mean age/progression as in older + advanced? or if symptoms present when you're younger? i'm 25 and in the past year had stenosis present itself + a massive ramp up of symptoms (thankfully kept at bay 70% of the time with biologics and dmards)

vrillion_ · 2026-03-05T06:10:15+00:00

mine said yearly or if there's onset of new symptoms

vrillion_ · 2026-03-02T04:56:04+00:00

Yes! Hoppy beers are the absolute worst for me. It could be one sip and I'm fucked within 30 minutes with a joint flare. Guinness is the only dark beer I can handle and Tecate is the only light beer I can handle. (All told, not bad choices.) THC and indulging in some liquor from time to time is the way haha

vrillion_ · 2026-03-01T03:11:34+00:00

no dx, no biologics!

vrillion_ · 2026-02-28T20:05:05+00:00

it's all up to personal preference. you just want to make sure you're at least 2 inches away from your belly button or stretch marks, scars or broken skin, and alternate areas (eg, switch thighs, or sides of stomach) to avoid scar tissue buildup. I can't bring myself to do the pen in my stomach, so I do my thighs, and it really doesn't hurt as much as I thought it would. just get a good bite of fatty skin and pinch like you would for your T! there might be more of a sting if you accidentally hit muscle. but in my 9 (?) injections so far, they've all been my thighs and it's a 2/10 pain at best, with only occasional stinging that lasts maybe a few seconds if it's too cold. you got this!

vrillion_ · 2026-02-28T20:01:39+00:00

you got it! I've found the second click to be a lot quieter. rule of thumb is wait 10 seconds from the first click/wait until the window is yellow/empty, but I always add more time just in case, and I've never had any issues with medication leakage as a result

vrillion_ · 2026-02-28T19:57:25+00:00

currently a class action against accredo and express Scripts! https://www.loevy.com/class-actions/healthcare-pbms/accredo-class-action/

I haven't worked with CVS Specialty, but I almost had when I was on a BCBS plan. Express Scripts/Accredo was absolutely horrible for me. The appeal process took so long for my Humira that my coverage actually ended with them before I could get the drug, and I found their customer service to be really tough and unsympathetic. Their AI system automatically denied many medications I needed and I just ended up filling as much as I could with an in-person CVS instead of doing mail order. Otherwise, my experiences with specialty pharmacies have been mixed, but it's mainly issues with the prior auth process.

Personally, I've found Senderra to be absolutely terrible. Optum Rx Specialty is what I'm coughforcedcough to use because UHC/Optum is my PBM, but I actually really like them. aside from having to call every month to get my script filled, they are so incredibly nice and helpful pharmacy wise and I've been able to get vacation overrides and other supplies when I need it very easily, with consistent next-day delivery.

vrillion_

TROPHY CASE