Well the doctor who diagnosed me moved to Chicago about 4 months back and I've just recently started seeing a new guy who's a half an hour away from where I get the treatments and I don't see him at the infusion like I did my previous doctor so since then I've seen him twice. Needless to say he has not know whats happen thus far and how far we've come in a year.
At this point I'm on 60mg MTX, and 700mg (7 vials) of Remicade given introvenously. Originally it was 200mg of the Remicade per 8wk, now its 700mg per 6wk... He wants to bring it down to 4 weeks now and swap the dose down to 500 per 4... He says that if remission is going to have a chance of happening the pain and swolen joints need to stay away for the duration of the medicine. Now in the last week to two weeks tops before my infusion the pain comes back and by the last few days its borderline unbearable and I'm really wondering what the chances are of remission really happening...
I'm a 26 y/o male, college student who is ONLY able to get these infusions because of student status and the amount of money I make per year. Because of this and getting rid of my insurance (yes in america, apparenly no insurance means you can get help... messed up huh?), I get the infusions for free through the assistance program. Apparently these infusions cost mucho dollars, upwards ,000 per vial! There is no way in heck I could ever afford something like that at what... 60 grand a year?! And if I was an insurance company one look at that and i'd find ANY reason not to give the treatments or even limit them to an amount that in reality won't do jack $!#@ for me...
When I intially got disanosed I could barely move, and now I practicaly survive off of these things. Without them I become useless and a major burden and have to grunt and groan just to stand up, from the 2nd infusion onward I was given back my life. Soon I will be graduating but I feel that by getting a nice job, I will end up eyeballs deep in debt, having to get insurance thru a company that will give me limited infusions or w/e and well... I just don't know and are way too young to understand the full depth of my situation.
Is there anybody here who's actualy gone into remission? Or even somebody with more information to help me out because I want to learn more. I don't have any other medical problems and this whole thing makes me feel so depressed but I never give into that and only push myself that much further... my term starts up again tomarrow and I just had my infusion on Friday and finally feel a bit of relief. I also got a troubling letter in the mail a few weeks ago about my last blood test telling me the results were fine but there were elevated levels on enzymes on a liver and will follow up on the next visit but that is mid February.
Any advise or tips to help me out? I'm on meloxicam and tramadol for pain during downtimes and of course the Folic Acid daily to offset the MTX, but take no other medications. Ive got perminent fusion in my shoulder blades and can't raise my hands above my head (maybe 45 degrees upward, no more) and do good to lift 35 pounds with both hands! I wanted to try physical therapy but trying to stretch on my own only brings the downtime back sooner, and its almost like trying to get myself fit only brings pain
I have read about total remission it hasn't happened to me yet but I have just been on MTX fir 4 months now and lucky for me it is working. keep trying the exercise but maybe you should be seeing a arthritis exercise specialist. Take it easy on the exercise start real slow. Since you are low income there must be a program or physio therapist you could see at no cost. I know it is hard to study and deal with all these health problems but keep at it . I am twice your age and exercise every day . It helps but it has taken me a year to get to the level that I am at now and I can still only lift about 5 lbs without feeling it in my back. Liver enzymes are normal between 3 and 22. I take 5mgs a day of folic acid except for MTX day ask your pharmacist if there is anything else you can do. Hang in there.
Are you talking about remission without meds? If so, then no I doubt thats even possible. With meds, the VAST majority of people w/ PsA live nearly pain free normal lives. It can be difficult to find the right treatment combo, but once found it's usually very effective. And complete remission for anyone if unlikly im guessing. I take 20mg's of MTX a week and my symptoms have all but subsided. I get an occasional ache and pain, but i basically feel normal 95% of the time.
I have never had a remission that was med free but sure hope that someone has! Maybe during early onset there are people who can manage it. I have had PA for some time now and have had a few remissions but always still had to take meds to maintain. Glad to hear that just the mtx works for some of you! i have had PA for 7 years now. On MTX 15 mg weekly and remicade 800 every 4 weeks and still getting worse. remmission is a dream to me, don't ever see it happening. i would be happy to have a week where i am not so tired after work that i need to go to bed straight 1 or 2 days a week. costs are scary. remicade cost my insurance ,000 each infusion. i too am back to aches nd pains after 3 weeks. I don't want to remove your hope, but i know of no-one that is in or has been in remission to an extent that they have a normal(ish) lifeI have a friend who has had PsA for nearly 20 years. When 1st dx he couldn't even walk. He spent 2 months in the hospital hooked up to a steroid drip before he finally got any better. Since then, he spent 15 years on predisone and the last 5 on MTX, and he is basically pain free. So yes, it's possible if not probable that you will feel normal again one day!Hi Mogeroth, Clinical remission is an absence of pain (less than 15 minutes upon awakening) normal RF, sed rate, and inflammatory markers. No visible inflammation, synovial fluid, or swelling by MRI. If any of these are positive then you're not in clinical remission.
I have found life with PA to be an uphill battle. I went on aggressive medication regiments and had SEVERE complications that I still suffer from. I am a skeptic when it comes to remission. All I saw was a reduction in te side effects of the disease. I found a combination of acupuncture and hydrotherapy combined with pain and sleep meds give me as much or more relief as the Arava, Ebrel, MTX, Celabrex, Vioxx ever did. I couldn’t even walk early on. I was ready to give in and die. My best friend literally grabbed me and made me get up and start getting involved in activities I enjoy and do something active everyday. He saved my life. I live with some pain everyday but the drug of the day will likely cause more issues than the disease. I found what works for me, if and when I turn for the worse then I may go on meds again. I have had PA for 10 years. I listen to my body and it tells me what it needs and how far I can push that day. Keep fighting the fight but I would caution anyone to not just blindly turn their lives over to a DR pushing the drug of the week saying there is little or no risk. anytime you play with your immune system you are playing with god and they don't know how it will harm you in the short tern or long term. Guess what, there is no cure for PA and remission on meds is a mask at best. Many people are chronically ill from the side effects of the cures and hold themselves down medically trying to cure a disease without a cure. Hang in there and get active and fight everday to live a full life. I have climbed moutains and traveled far and never will let PA win.
It's probably not what you want to hear, but my recommendation would be to find a country with a better health care system. It's pretty good in New Zealand, but unfortunately your non-citizenship would make that redundant.