I am recently diagnosed with PsA and have pain in my neck, one index finger, one thumb, one pinkee and one wrist. Other fingers are tight and exercise is somewhat painful for my hands. I was taking heavy ibuprofen, which was only taking the edge off, but have stopped as I do not want to have stomach problems. The pain at this point is mostly manageable. I am heading to the Rheumatologist at the end of the month to talk about pain management, inflammation and prevent joint damage. Do I start on methotrexate now or do I wait until I have worse symptoms? Really looking for suggestions and guidance here.
The general thinking about psoriatic arthritis is to treat early. While managing the pain is always important, so is minimizing the damage caused by the disease. The damage caused by PsA is not reversible, so preventing damage is very important. The usual first step in preventing damage is methotrexate. Some patients go right to biologics, but it depends on the patient.
As Nym said, early and aggressive treatment is called for, in order to prevent damage. While the pain may be fairly manageable right now, which is good, it doesn't mean that damage isn't occurring.
Also, you mentioned pain management. If you don't have lots of damage, when the inflammation levels are controlled, so will the pain. If you are using pain medication, it can cover up damage that is taking place, so this is something to keep in mind. There are many rheumies that won't touch pain meds, mine is one of them.
If you want to prevent joint damage, DMARDs such as MTX are the place to start. There are other DMARDs as well, so if MTX doesn't work out, you can keep trying.
Oh, and I've been on and off (mostly on) NSAIDs for years now. The rule is that if I'm on NSAIDs that I'm also taking prilosec daily. I know that some people are more sensitive to these than others, but so far this has offered me sufficient protection.
I'm not so sure moving on to direct treatment is giving in OR involves stronger meds. Thanks to a lot of hype and too many lawyers we certainly get that impression. If the OTC drugs had to give all the "warning information" as close to a near certainty the Prescription drugs do, we would hesitate to take a Tumm. Funny but I had a lot more trouble with NSAIDS, Prednisone, and pain meds than ever with any of the "stronger meds" and lot more trouble yet with none of the meds.
I'm convinced that the most difficult part of all of this is realizing that we have a progressive incurable disease that that will requires life style changes and dealing with that. I don't know of anybody who worries about the meds when they get past that.
Everybody deals with the realization differently. some quickly some not. I will say this though getting into a treatment regime that starts to provide you with relief early on, makes it all a lot easier. There is lots to hope for. 90% of us live a normal life. (NOTE: I didn't say life with out difficulty or adjustments) What I am waiting for is someone to tell me what a normal life is........
Ex Pats have some unique challenges, but also some advantages. Some of the cool stuff is happening just south of you in India and some original research in Hong Kong (I realize you're near Shanghai and its a big country)
impgypsy, I believe below is the most important thing that lamb said. I think you are struggling with the idea of the disease, and needing medication. We all take different paths to acknowledging our new reality. It's not easy, and the acceptance comes in waves. For me, I've been fighting against this disease for 3 decades. I'm still not thrilled to inject myself with meds, and take pills every day, and have a disabled parking placard. You'd think I'd have adjusted by now, right? Nope. I still have mini mental tantrums about this disease. But then I keep going with my meds and dr. appts, because I know that is what is making it possible to live my best life. I'm doing about 80% better than predictions when I was dx as a child, possible because I've been strict with my meds, proactive with my docs (no sitting back and waiting for them to fix it), and still keep reaching for that "normal" life and pushing myself to do more, always more.
Hang in there!
tntlamb said:
I'm convinced that the most difficult part of all of this is realizing that we have a progressive incurable disease that that will requires life style changes and dealing with that. I don't know of anybody who worries about the meds when they get past that.
On a different train of thought, I wanted to start Enbrel right away. Naively, of course. My Rheum explained that each Insurance company dictates where he must start. I started with Sulfasalazine, no help and strong side effects, so on to Methotrexate, no help, strong side effects. (Please note that I know these meds have helped others tremendously!) Then I got to the Enbrel, started with 50 mg autoshot once a week, currently on the 'build it, mix it' 25 mg twice a week to prevent the 'drag' I was feeling with the weekly shot.
I react so adversely to severe storms, and it seems it never just rains here anymore, that this summer has been difficult to really know if there has been a profound change. Of course we always want something astonishingly good to happen, they as Doctors are looking for any improvement!
I wouldn’t take any medication without direct supervision with your doctor. That being said, the sooner you start treatment, the better chances are you will lead better lifestyle later on. The longer you wait, the more difficulty you will have with your treatment.
Marietta said:
impgypsy, I believe below is the most important thing that lamb said. I think you are struggling with the idea of the disease, and needing medication. We all take different paths to acknowledging our new reality. It's not easy, and the acceptance comes in waves. For me, I've been fighting against this disease for 3 decades. I'm still not thrilled to inject myself with meds, and take pills every day, and have a disabled parking placard. You'd think I'd have adjusted by now, right? Nope. I still have mini mental tantrums about this disease. But then I keep going with my meds and dr. appts, because I know that is what is making it possible to live my best life. I'm doing about 80% better than predictions when I was dx as a child, possible because I've been strict with my meds, proactive with my docs (no sitting back and waiting for them to fix it), and still keep reaching for that "normal" life and pushing myself to do more, always more.
Hang in there!
tntlamb said:I'm convinced that the most difficult part of all of this is realizing that we have a progressive incurable disease that that will requires life style changes and dealing with that. I don't know of anybody who worries about the meds when they get past that.
impgypsy said:
Marietta said:impgypsy, I believe below is the most important thing that lamb said. I think you are struggling with the idea of the disease, and needing medication. We all take different paths to acknowledging our new reality. It's not easy, and the acceptance comes in waves. For me, I've been fighting against this disease for 3 decades. I'm still not thrilled to inject myself with meds, and take pills every day, and have a disabled parking placard. You'd think I'd have adjusted by now, right? Nope. I still have mini mental tantrums about this disease. But then I keep going with my meds and dr. appts, because I know that is what is making it possible to live my best life. I'm doing about 80% better than predictions when I was dx as a child, possible because I've been strict with my meds, proactive with my docs (no sitting back and waiting for them to fix it), and still keep reaching for that "normal" life and pushing myself to do more, always more.
Hang in there!
tntlamb said:I'm convinced that the most difficult part of all of this is realizing that we have a progressive incurable disease that that will requires life style changes and dealing with that. I don't know of anybody who worries about the meds when they get past that.
I so appreciate all of your helpful comments. Yes, you are correct that I have not yet totally accepted that I have this disease, although must say that after seeing 2 drs and endless searches on the internet I have been unable to come up with a different answer..:-( You have made so much sense and I understand my emotional process to acceptance of this disease, and what it means, will be a roller coaster ride. I can not put into words how better I feel having chatted with people in the same boat. I just hate when friends say 'it will be fine' or Drs. say ' be thankful you do not have a worse disease,' they really do NOT get it.
I will follow your recommendations and will get on meds, with the guidance of a DR. asap. I will try to not worry about the side effects of the meds, and will just try and take it day by day.