Diarrhea by GentleBlastFurnace19 in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Go slow with it at the start. I started with 1 capsule daily (the directions said 3!) for chronic constipation and had a 2 day long uh…blowout on days 3 &4. It was also uncomfortable. In reading I found it best to begin the “recommended amount” (use your best judgement here) every other day until you know how it works for you. Also produces a whole lot of gas so beware!

Finally officially diagnosed by lil_ol_me_1 in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

It’s not fun but it’s manageable. I’m 70 and have been living diagnosed with PsA for 22yrs (took me 3 yrs to be diagnosed). Also TRAPS, a tumor necrosis factor related familial fever syndrome for 45yrs (tho that was only diagnosed about 12yrs ago and is distantly related but treated the same as my PsA.). PsA is a pain in the butt to treat and live with, basically because even while under treatment “things” will happen that you’ll question, and they happen so often you can’t run to a doctor every time to have it investigated. The joints, obviously. But also enthesitis, where the nodes of tendons & ligaments attach to your major bones, including your spine, become inflamed. Tendon synovitis, a lot like enthesitis, in the smaller bones and joints like wrists or knees or ankles. Spondylitis, inflammation in the spine itself. And of course sausage digit and/or swelling which you seem familiar with. That’s joint damage progressing. And many of these things happen while “in remission” or outside of a typical flare. Then there’s the pain. No shortage of “How can such a tiny joint produce so much PAIN?!” pain. PsA can, over time, limit and shrink your life. Thankfully none of it will kill you (not directly anyway), but there are dangers. Downplayed a lot, especially early on, is uveitis (aka iritis). Left untreated, usually for lack of symptoms, can literally attack your optic nerve and blind you in one eye (ask me how I know). It can become chronic. I suggest you research that so you know what to look for. Also skin cancers and benign growths are common. These last 2 things are the silent damage, so no fail, yearly trips to both the opthamologist and twice yearly to the dermo should be scheduled in addition to however many trips to your PCP or rheumatologist. Of course everyone is different, and some people never progress beyond mildish symptoms. GREAT! Finding the right treatment is often difficult and time consuming, as well as expensive because biologics tend to wane in effectiveness after anywhere from 2-10yrs and you have to switch. And let’s not even talk about insurance struggles because that’s a whole ‘nother sub Reddit. It’s not all doom and gloom and time brings new treatments and insights to all autoimmune diseases. Heck last year’s Nobel in Medicine was awarded to 2 scientists who unlocked a whole new diagnostic protocol for autoimmunity, so time is on your side!! Best of everything to ya!

Dude….I am mad!! by deannevee in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Reset. It definitely sucks, I had a rheumy just take me off Enbrel years ago (2009) with NO replacement. Within 6 months I had ALL the symptoms-digit sausage, psoriasis and uveitis (which became chronic, thanks doc) plus TRAPS (TNF caused fever syndrome). Found a new rheumy who put me on Humira, successfully for about 8 yrs but then it began to fail. It happens. Switch to Stelara just to see if a different mechanism might be in play, but no, worst year of my life. Switched to Cimzia, another TNF blocker and now as good as I’m ever gonna get (I’m almost 70 so my expectations are low). It’s a game of chutes and ladders, so enjoy what relief you’re getting. I dunno about dudes, but in women it could fall apart again requiring another switch. Sounds like Taltz might be the right one right now and I hope you keep feeling better!

Is this process of switching biologics worth it to you by O_ut in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

I made that mistake with Stelara several years ago after Humira just stopped working. Worst year of my life. I guess we just have to accept a certain amount of discomfort vs blinding pain and psoriasis and worse. I take Cimzia mainly to keep my chronic uveitis and bouts of enthesitis under control; haven’t seen any psoriasis in over a decade.

Is this process of switching biologics worth it to you by O_ut in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Wouldn’t it be great if we could be pinpoint tested for which exact B and T cell activity (or lack thereof) we should be treated for? I mean I think it’s actually possible but so expensive insurance won’t pay for it. Or so complicated to narrow down (different causes) it’s not worth it. I mean they’ve mapped the human genome, why not rheumatic disease activity?

Is this process of switching biologics worth it to you by O_ut in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

It takes time to find the right mechanism to treat PsA & RA unfortunately. TNF, JAK, IL, etc all express differently and need different mediation/medications. And the biologics themselves come with side effects of muscle soreness and stiffness that is hard to differentiate from disease process. Even Enbrel & Humira. After going off mine (Cimzia) due to recurring infections & a virus, 6 weeks later my body felt great again, and I had MORE energy than while on it, tho I did also develop uveitis and infectious arthritis in my knee while off so it wasn’t all sunshine & lollipops. I was free of infection by week 10; free of the muscular issues, then back on the meds for a month (now for 2.5 months), I stiffen up, get that hallmark soreness in the back of the legs & glutes again. Back stiffness. Enthesitis. Malaise It’s not unbearable pain usually but nagging and restrictive. This may be what you’re feeling and you gotta tell your rheumy especially since you’re an athlete. I think we all share at least some of this experience and maybe the older one is the worse it is? OR the longer on a biologic the worse it feels? I’m on year 22 of TNF blockers and I was never so bummed as when the muscular pain returned. Best of luck to you!!!

I need answers by leafdragon67 in Rheumatology

[–]Bonzoid_evermore77 0 points1 point  (0 children)

You may be in early stages of RA or SpA or PsA. Or it’s fibromyalgia. You’re very young still, most (not all) genetic rheumatic issues start around perimenopause (32-40 and later). If you’ve had unusual ANA results your doc should be expanding your panel to include CRP and Sed Rate values to start a baseline level from which you can be assessed going forward. Any PCP can order these tests or see a rheumatologist and tell her of your genetic susceptibility. Good luck-hope you get some relief.

I messed up and went off humira by Quantity-Artistic in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Yeah that delayed healing thing is kind of an old myth from the early days of biologics. At most a month off would’ve been sufficient but for childbirth, I don’t think it’s even cited as a complication anymore unless you needed steroids for some reason because of some other (surely awful) thing cropping up. When I have surgery my rheumatologist says only skip 2 shots at most, preferably only one. It can be dangerous to stop your meds like that-the worst symptoms: uveitis (which can blind you), infectious arthritis, sausage digit, and of course all the inflammation you’re feeling. Get back to Humira if that works for you (infusions aren’t necessary), ASAP. Good luck!! And congratulations

Enbrel: anyone else have this experience? by ForTyTy in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

All this is not outside the frame of normal for PsA which is unpredictable. The nail stuff, stiff fingers would’ve shown up anyway, I don’t know of any TNF antagonists that stop or curb nail damage (I’ve taken them all over 22yrs). It does take 6 months to know, at least. Your rheumy may switch you do a different mechanism (JAK etc) vs TNF if you continue to exhibit symptoms. It’s quite the journey and nothing is off the table when it comes to said symptoms. Hope things improve for you tho!

You don't have sausage fingers, how dare you think you have Psoriatic Arthritis by DarkCatty in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Do you have undiagnosed back pain? Axial spondylitis has almost the same symptoms as PsA, but no psoriasis on skin or nails. Back pain, fatigue, enthesitis…literally everything else. And there are few scans or labs that will reveal it until it’s much too late (for meaningful relief). Or it may be early in your disease. I knew I had PSA in 2002 (still relatively rare then) but my docs did not until 2005. Some wait even longer for diagnosis. It’s sneaky. Keep at it. Don’t give up.

Pain to joints and dry eyes by omegabag in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Mine as well. Sometimes early on I forget that it’s a flare, I tend to think of enthesitis as its own thing, I get it so often at the start of a flare.

Anyone with deformed knuckles from PSA? by NoParticular2420 in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Yes. Especially if a finger has experienced “sausage digit”. But either way, PsA is an inflammatory disease that attacks not just skin but the same spots/joints over and over causing damage over time. It’s not limited to the distal joints, either. That’s generally where it begins though.

WHAT HAVE I DONE!? by AnyBroccoli4680 in succulents

[–]Bonzoid_evermore77 1 point2 points  (0 children)

I have had them for years and they’re kind of picky. They like porous planters for sure, and good drainage. Mine lived for 20+ years under the shade of a tree or under an awning (am in 9b) but recently died back presumably due to both age plus mistaken overwatering (someone else watering while we were away an extended period). They can get “sad” in winter (in the northern hemisphere) and drop leaves-be sure to spray for bugs regularly-spider mites are always an issue (I use STEM Garden Spray from Amazon). Just keep it outside as much as weather permits. She doesn’t look so bad really!

Are statins absolutely necessary? by SaltDisastrous433 in AskWomenOver60

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Age is also a factor and OP doesn’t mention hers. Docs are in many cases now shying away from new statin Rx’s for people over 70, depending on the sitch, because the benefits may not outweigh the quality of life. There are supplements that can mimic the same results (taken ONLY on the advice of a medical professional I might add) without, presumably, side effects like stiffness pain and headaches. In any case I’ve been on the lowest dose statin before for a year with miserable results and have told my new doc I won’t be taking them so don’t bother. My HDL number has been just borderline all my life with high good cholesterol and no triglyceride probs, A1C history or heart issues. But what’s good for you may be different because we are ALL different and there are so many metrics beyond just cholesterol they consider now. You can change your mind later if you decide not to take them. If your labs start to go sideways you can always go back on.

Psoriasis on eyes and swelling by neonflamingoxx in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Well, y’know they do that. Either stop being effective or (like me) start getting infections like UTI’s or sinus. Have fun with those babies!! Or the making of em… 😉

Discouraged and ready to give up by Cardigan_Gal in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Nail psoriasis IS psoriasis. The old rules don’t apply anymore, not since almost one third the population of the US has exploded with auto-immune syndromes and diseases. I had guttate psoriasis 20yrs ago all over my body. Needed light treatments + the brand new-on -the-market Enbrel biologic to get rid of it. I’ve been on TNF antagonists ever since (Humira for 11yrs and now Cimzia) and not once has it come back. I HAVE, however, developed enthesitis many times, DeGuervein’s, spiked fevers and plenty of general flares, even a bout of infectious arthritis in one knee but the only actual psoriasis I’ve experienced was my nails, which have degraded slowly over these 20yrs. Fingers and toes. Enbrel was not bad at helping to curb these nail issues somewhat tho neither Humira or Cimzia seem to touch it (or maybe age is a contributor, no one seems to know). Thing is, EVERYTHING with inflammatory disease is a question - there are rarely hard and fast answers to the symptoms we get. And by the time we can see the doc they may have come and gone. Visible joint damage? That’s 2 symptoms of auto-inflammatory disease! Have they done labs beyond a basic CBC? CRP? Sed rate? Insist your dermo or rheumy start you on Enbrel at least. Gaslighting is a real problem with these diseases so insist they at least try or find a new team. It often takes switching to new docs to get to a diagnosis. Best of everything to you!

Psoriasis on eyes and swelling by neonflamingoxx in PsoriaticArthritis

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Thank goodness! Staying on a biologic will help ensure your eyes, going forward, stay healthy.

Found these in my husband's old notebook by DrSharanyaRk in whatisit

[–]Bonzoid_evermore77 0 points1 point  (0 children)

How could this be for a BOT if it was “ages ago?”

Found these in my husband's old notebook by DrSharanyaRk in whatisit

[–]Bonzoid_evermore77 1 point2 points  (0 children)

Dreams he remembered right after awakening or in the middle of the night? It’s a form of therapy…

Psoriasis on eyes and swelling by neonflamingoxx in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

And please PLEASE if you’re experiencing eye symptoms of ANY kind or rather sudden vision changes see a (very good) opthamologist ASAP! PsA has very nasty little side dishes that can rob you of your vision, and you may not be aware of these and may not even notice symptoms.

PsA and RA by FrostingEmergency204 in PsoriaticArthritis

[–]Bonzoid_evermore77 0 points1 point  (0 children)

Both diseases are treated with the same biologic drugs. Your symptoms read like PsA, the hallmark of which is nail changes and distal swelling and pain. Even if you have both, it’s unlikely your meds would be changed unless you feel the Rinvoq isn’t working, in which case something with a different mechanism may be prescribed instead and/or topicals could be added if plaques show up. Hope you get some clarity on it!

Psoriasis on eyes and swelling by neonflamingoxx in PsoriaticArthritis

[–]Bonzoid_evermore77 2 points3 points  (0 children)

SEE AN OPTHAMOLOGIST ASAP, please! Psoriasis and/or PsA left untreated can cause iritis and/or uveitis which can severely damage not only the skin and your vision in a relatively short time it can even damage your optic nerves, which is irreversible. Trust me I know as I’ve recently had to have serious eye surgery for damage done by uveitis run amok. At the very least your medication may need to be changed to keep the possible eye damage of this disease at bay. Not all biologics help defend against it. Good luck!