I was diagnosed with PSA last week and I am seeing my doctor next week to begin a new routine of meds. She has suggested Methotrexate or Sulfasalazine.
I am not sure which one she sill ultimately suggest but I wanted to know what has worked the best for people? I am afraid of some of the side effects of each.
I am worried about having PSA but at least I finally have a diagnosis. It has been a long 2 years!!!
Welcome Kid! The first thing we tell Newbies to PsA is to fire DR. Google (sort of) The more you read the more concerning it becomes and FEAR is not a good thing. Our Mantra here is pretty simple:
FEAR THE DISEASE, NOT THE TREATMENT
I am experienced with both SSZ (Sulfasalazine) and MTX (Methotrexate) LOVE MTX (even when it doesn’t love me) and wouldn’t be without it. Every time I have a MTX Hangover (which is rare)and is just like the real thing, It takes me minutes to remember what it was like before. Most of us (by a long shot) do really well with it IF we take injections not pills, Drink large volumes of water (only water) and keep up on our RX folic acid.
That being said depending on where you live and your insurance you may be on “Step Therapy” where you have to try one or two cheap meds before you get approved for the “good stuff” and fail or at least fail the ACR-20 protocol (20% improvement in some specific markers) even though it helps. (the DMARDs are dirts cheap $50 -$100/ month where as the biologics cost $4,000 - $25,000/month so the step therapy makes sense. IF you are involved in step therapy (ask your doc) I would ask him to consider starting you on SSZ. It is the least likely to help and pretty likely to get you going (literally) on both ends. You can fail this one pretty quickly The quicker you “fail” a med the quicker you can move through the “gap” (read about the Gap here )and get to the good stuff.
I agree with everything TJ says, including the tactical approach if on step therapy. Many of us here in the UK think along similar lines in order to proceed as quickly as possible towards biologics, even though our system is completely different.
I would say that Methotrexate has a better success rate than Sulfasalazine. I’ve been taking Mtx for 7 years, with just one year off. I don’t have any side effects, seriously - none.
So for 7 years I’ve had regular blood tests - liver, kidneys, neutrophils and all that. At one point my liver enzymes were raised which is why I stopped Mtx for a while. However a liver scan showed a healthy organ, so back I went onto Mtx with a slightly higher dose of Folic Acid and all has been well since. So many blood tests over the years - and on the whole, all good.
I’ve always been prone to hangovers from alcohol, though have persevered bravely! Yet PsA drugs rarely cause me any problems. Sulfasalazine was okay … no squitters, no side effects at all, it just didn’t help the PsA.
I don’t like taking drugs. I thought I’d be in some sort of twilight zone once I started PsA meds but as it happened I came out of the shadows and started to feel increasingly healthy for the first time in years. I hope things go well for you too.
I really appreciate all the advice and I feel better already. I have taken notes on what you advised and I will cover it with my doctor.
I have been really surprised at how hard it was to get a doctor to take me seriously.
I am 51 and up until a few months ago I had never done any pot but I have found its the only thing that helps me rest and not be in pain. I only take it in a brownie or tincture and only on the weekends. I travel for work about 75% of the time and I am afraid to travel with any.
I think traveling makes me hurt more but people think I am making it up. I am to the point that I really don’t care what anyone else thinks. I just want to feel like myself again.
Of course travelling hurts, it’s really difficult till you get PsA under some sort of control. I bet 90% to 100% of members here would agree with that.
Absolutely travelling hurts. Also I find long haul flights cause a mini flare, even if I’m well rested. The medications can make a real difference though, and it sounds like you are on track, just remember that it often takes time (way more time than we want), but it DOES get better.
I am so glad that the meds will make a difference. I only have one more flight before the new meds so I will just have to deal with it. Luckily it is a short flight.
I will let yo guys know how the meds work and I want to thank you again for all of the advice!!!
Hi kidflemingo! I’m so glad for you that you found this site…it sounds like you’re on the right track already. If I hadn’t found this site online, IDK where I’d be. They convinced me to fear the disease, not the meds, and I went on Enbrel (5 years ago). No SEs and it works great for me!
Good luck!
I am very glad that I found it!!! Luckily I don’t have any friends with PSA so I don’t have anyone that knows what I am going through. Even my wife really doesn’t know. She finally realized how it was effecting me when I bought the brownies.
Welcome and know that the folks on this site are genuine and caring. I’ve only received well intended advice and excellent guidance in the 10 months since my diagnosis. I also started on Methotrexate with some reluctance and have had Sulfasalazine added. I think they work a bit and I would likely be far worse without them. No side affects…still have a full head of hair. They haven’t addressed the fatigue and lack of zip that I once had. Some of that is due to poor quality of sleep while my joints yell at me. Just remember, the initial treatment is part of the long term “solution”…the rheumatologist is learning by your reaction to the present prescribed meds…and this takes time, too much time. Likely you, we will be in process for the duration of our lives. As stated above, if fear of the possible side affects keeps you from taking the meds, there is a very real possibility of permanent joint deterioration. PsA is progressive, incurable, but manageable. AND…I would highly recommend keeping a PsA journal…it lets you have an accurate recall as to when you saw certain doctors etc. I summarize every appointment, current meds and how I’m feeling. All the best to you!
Welcome, everyone has already said what I might have said. I was one of those that came to this site overwhelmed. Unlike you though I was angry and in shock too. Being Irish (but living in the UK) I guess helps that PsA happened suddenly for me so I wasn’t al all thankful I had been diagnosed either.
But the good people on here soon sorted me out. Mxt didn’t like me one bit and I so I hated it. But sulfasalazine did work for me for a time with zilch side effects so that calmed me right down.
Go with the flow medication wise and see. You do spend the first while living in 3 month cycles which is tedious and boring but it eventually evens out and things do get an awful lot better. Best of luck.
My RA has prescribed Methotrexate but I cant take it for another 2 weeks due to wrist and elbow surgery on Friday. Hopefully I will see a big difference SOON!!!