Thank you for affirming that. After a while with this particular doctor, one begins to wonder. Yes, tried sulfasazaline as a very first drug for RA. But it, like methotrexate affected liver and leflunomide did nothing for symptoms. I’ve run through JAK inhibitors and Rinvoq, Humira, Actemra but as these were for RA, which I didn’t have, none were effective save Rinvoq for a time, though Humira could have worked but didn’t.
Rinvoq and Humira are used for PsA too though. Basically the biologics used for PsA are:
Humira, Enbrel, Simponi, and Cimzia, - anti TNFNa ones
Cosentyx, Talx and Bimzelx IL17a and IL17 ones
Stelera IL12 and IL23
Tremfya and Skyrizi IL23
Rinvoq Jak Inhibitor
I’m sure I’ve missed out some too. Bar the interlukin (IL) ones the rest can be used for RA too.
Thanks for that info. That’s pretty much the lowdown on PsA drugs I discussed with the sports med/rehab/physiatrist doctor I’m fortunate enough to have here. The only drug that worked at all for me was Rinvoq, not surprising as it’s for both RA and PsA. I was on the generic Hyrimoz for Humira for 8 months which did absolutely nothing, but Ontario guidelines say you must be on a biologic for over 6 months and “fail” before another will be allowed.
I was initially prescribed Taltz when diagnosed with PsA last December. You might recall I had that severe allergic reaction to that one involving drug induced vasculitis. I still bear the scars on both feet and ankles. Put me off my feet for 6 weeks. Incredibly painful and I do not wish that reaction on anyone.
I’m into my 6th month on Tremfya. It has been miraculous at clearing up the plaque psoriasis on both feet, toenail psoriasis and inverse psoriasis everywhere one can get it including genitals. That inverse is one invasive psoriasis. I have not used the prescription Zoryve or Desonide for ages. OTC moisturizers and bath products, Cetaphil and Aveeno, do the trick.
I’m waiting for Tremfya to work equally well on the joint and myofascial pain aspect, but I understand that takes longer. So I am impatiently patient on that one. Frankly, I’ve had decades of experience on this, so I’m more used to this than the psoriasis. I have prescription pain meds to get me through the worst episodic pain.
No idea what the next option would be if Tremfya is not a success. It works so well on the psoriasis, I’d be reluctant to change course. Hoping I won’t have to find out.
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Thanks @Janet, you certainly have been at the extreme end of PsA and suffered more than anyone should. I’ll be hoping and praying that you get a break soon and can regroup yourself in a sort of remission. Your story and @Poo_therapy typically well educated input combined are very valuable to many readers. With all the rapid AI hitting us, perhaps breakthroughs are around the corner with new approaches to autoimmune diseases.
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Breakthroughs are happening at pace in the cancer world which will eventually trickle down to us lot, specifically about tailoring meds to suit us individually or getting our bodies better able to accept a med, etc. That would be a relief for sure.
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Hello everyone! It’s @Seenie. I landed on LWPsA this morning to see whether my login would still work. It does. Even if it’s the wrong one. Yippeee … I haven’t been thrown overboard yet!
Happy Summer, Happy 4th, and Happy Canada Day! I’m in the midst of a connectivity problem, but when it is solved (and I’m not working on my iPhone12 mini), I will fill you in on my latest news. And there’s a load of it … almost all PsA-related, as I suggested to my cardiologist. And he replied that he suspects I’m right. More on that later. Shoutout to @Amos: keep on top of the blood pressure issue. Just do it!
@Janet I’m in Pembroke, and almost all my medics (the number is growing) are in Ottawa. Yes, I’m a frequent flyer at the General, the Civic, the Riverside, and lately, the Heart Institute. I’d love to chat with you sometime and maybe compare notes. I’ve pretty much been through the mill, eh? (LOL). Check my Seenie profile for my PsA “credentials”. Clicking on my avatar (the floppy eared red dog a few pists down) should take you there, unless @ModSupport has re-engineered the site. Teasing, @Stoney!
Warm greetings to all my friends at Ben’s Friends (I hope I still have some, LOL). We’ll be chatting and sharing soon, I hope.
C.
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Your other account was deactivated after a year of disuse. Would you like me to reactivate it?
Richard
Hey Dick, you are on the ball as ever! It’s OK, my Seenie account is working. I will use this one. If I feel the need to do actual work , I’ll let you know. I’ll try not to use VisitingMod.
When our connection problems are solved, I’ll email you!
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Hello all you good people! It’s been far too long since I touched base. Sorry to be sooo late to this chat party.
Reading through what I’d missed since my last reply here has made me REALLY appreciate my rheumy. And think about my erratic BP. @Amos and all you Canada peeps, I can’t believe how little time and communication you are allowed with your rheumy. How I wish y’all could see someone in rheumatology where I go. Even though we have to fly out of Alaska to Seattle I doubt I’d switch even if a rheumy came to town. My husband and I just, a couple weeks ago, got back from Seattle. He saw a Veterans Administration neurologist (Agent Orange exposure in Vietnam w/Parkinsonism diagnosis 
) and I saw my rheumy, who is at UW Medicine. All doctors at UW are freely accessible via messaging on the UWMed patient portal. Free of charge, unless the doctor has to spend more than 5 or so minutes answering. So quick concerns are no problem and often can be answered by someone in the care team if not the dr directly. There is also the possibility of a Telemed appointment for people who cannot readily get a walk in appointment. We have a Telemed scheduled for my 6 month follow up.
My appointment with him was about 45mins. Not only did he answer any question we had but he also did another thorough exam. We discussed possibly switching from Humira but he left that decision up to me. It seems to be losing efficiency so I am most likely building enough antibodies to make a switch to something else a not too distant possibility. But I’m still getting relief from it and the Ps under my nails is still mostly controlled so I think I’ll wring everything I can out of it before moving on. He and I both know that I have A LOT of OA as well as PsA. I’ve been told SO many times that the OA has nothing to do with the PsA that I offhandedly commented such to him. He promptly corrected that statement saying that long term chronic systemic inflammation does indeed play a part in OA development. DUH, how well we know! I’m sure we all wish the entirety of Rheumatology World would read that memo! But all things considered I’m doing well. However, oddly, my BP which has always been “put a mirror under her nose to check for breathing” low is now apparently the victim of ‘white coat syndrome’, being elevated in medical settings. This is really odd and it’s freaking out all my drs other than my PCP, who knows I don’t really have HBP. IDK why this is happening but I’m not nervous in medical settings. Go figure. 
But just to be safe I take it at home occasionally.
The earlier sciatica discussion was interesting. I had it so bad first of this year that I finally got a couple of ESIs, which of course was a life saver. I don’t appear to have PsA damage to the ol’ sacrum from Hades but I do have a really crappy spine from stem to stern in general. Thank you inflammation! I love you too. So I guess one could say that PsA is indirectly responsible for the sciatica, crappy spine and all the other ‘just OA’ joints.
Well, I’ve rambled enough but just wanted to let you, my friends, know that I’ve not been chatty but am still here. My hands are a bit fuller now that my husband has a life altering diagnosis but I won’t go into the incredible HASTLE we’ve had to (and still do) go through with the VA trying to get treatment, compensation and benefits that are fully his right to receive and their responsibility to provide. That is a rant for a different forum. Oooo! That was my evil twin Skippy talking…
Take care my friends!
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Hey good to hear from any past regular members, we all love getting updates. @Mom_Cat , you sure have your hands full! I wonder if the antibodies that we form against biologics are as specific as the biologic used? Or, is it possible that antibodies that form are a wider spectrum making many biologics ineffective? I’ve continued to battle pain management during a flare and the flares are doing new things. It feels like I had a sports injury groin pull but I haven’t had any such injury. It comes from my back, through my hip and into the tendon in the front of the groin. It occurs when my fingers, feet and knees are all at their worst and then backs off almost like nothing was ever wrong. The only that helps my inflammation pain is Aleve (coated naproxen) 220mg. But within days my blood pressure heads up around 148/85 and I feel “off” in my head etc. Lousy roller coaster! But I am training for a marathon…Rheumy Consult Marathon so that I can get as much accomplished in 19.5 minutes before my next 6 month appointment. If I cut out any conversation that needlessly uses time like my name and birthdate, I may come away with something. Not the reumy’s fault, she is swamped and either sees many patients a little bit or few for more intensive examination. This is on the Canadian government who knew of the upcoming need for more doctors and nurses 25 years ago and ignored all that was coming down the pike with an aging boomer population. Anyway, keeping marching, enjoy the good days and hope for more to come!
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BP will go up when we experience pain. I KNOW. Once my BP began to hover in the 140s because of constant pain, my doc said that was too high and to add BP meds. Seems like I see some doctor every month. When they take my BP even now, and it is up, I have to tell them how bad my pain levels are.
Doc says the chronic inflammation adds to it in the blood vessels. I now have early-stage diastolic dysfunction in my heart. That is where the pressure in one side is higher than the other. It is not good to have, but my heart doc says anything that causes chronic inflammation will reduce the elasticity of blood vessels and the heart. Things like Lupus, PSA, diabetes, RA, all the inflammatories, will cause this. So now, I get to add a heart doctor to my list!