hate to ask the question but is there an average we can all expect to survive from taking all of the medications?i have yet to ask my dr.
I read in Dr.Dafna’s (i forgot her last name)book that we lose 3 years expectancy.
thats alot better than i expected. thanks
I doubt there is very good data on this. I also doubt it's even close to specific enough to make any kind of predictions. I don't think the biologics cost us anything in terms of life expectancy. I think the disease can damage other organs, so that's a risk. If the disease is well controlled, I think the risk is also.
I'm not sure about other drugs. I suspect prednisone is a bit of a problem. MTX causes issues, but they're reversible. I don't know the others very well.
I’m 59…diagnosed in January 2014… Symmetric…both arms…in pain most of the time…on mex/folic/pred cocktail no significant results to date…life expectancy for males in USA is around 87…I hear that those with psA lose 10 yrs…that takes me to 77…through research on net it’s my understanding that 50% of those with symmetric psA are disables in 10 yrs…so while potentially depressing it brings to mind how to maximize my next 10 yrs prior to possible disability onset…why not try to qualify for disability from work ( get 60% of current pay) until age 65 and travel and DO NOW because I won’t be able to in the future? At least die a happier man with life fulfilling memories?!
The game is a bit changed once you are properly medicated. It minimizes damage both to your joints and other health risks. But you're on prednisone with no significant results as well? Long-term prednisone use should be avoided, and short term you should have seen some impact already. Your goal is definitely to get good control. Why assume that you will be disabled? I've never assumed that, and I was diagnosed at age 36, 7 years ago.
Tom Geiger said:
I'm 59...diagnosed in January 2014... Symmetric...both arms...in pain most of the time...on mex/folic/pred cocktail no significant results to date...life expectancy for males in USA is around 87...I hear that those with psA lose 10 yrs...that takes me to 77...through research on net it's my understanding that 50% of those with symmetric psA are disables in 10 yrs...so while potentially depressing it brings to mind how to maximize my next 10 yrs prior to possible disability onset...why not try to qualify for disability from work ( get 60% of current pay) until age 65 and travel and DO NOW because I won't be able to in the future? At least die a happier man with life fulfilling memories?!
It is a full time job to get disability with so many hoops to jump through and extremely difficult to qualify for when you are disabled. If I were you I would be banking and investing a huge portion of your pay check now for later in case you are disabled. I think your numbers are off or old. Less than 10% are disabled now since the advent of biologics. Are you taking a biologic? To my mind that would be the best insurance for your future.
My PsA is now pretty much symetrical and of all the things I worry about becoming totally disabled isn't one of them. Lamb will give us the stats but I'm pretty sure he's said before that less than 10% become incapacitated by PsA alone. As Stoney says getting properly medicated to control the disease is essential.
Drs Gladman/Rosen/Chandran in their latest PsA publication for Oxford Rheumatology Library (April 2014) say that in both psoriasis and psoriatic arthritis it is calculated that patients have a reduced life expectancy of about three years. They also say that studies in the last decade have not demonstrated an increased mortality risk but it's unclear if the new therapies are responsible for this.
The bottom line is you never know when your number is going to be up. Sorry to be blunt but that is a fact.
As hard as it sometimes is I try to find something amazing in every day. I find this poem an inspiration I'd Pick More Daisies about enjoying the simple thing in life.
My sister's rheumy told her that PsA could clip 5 to 10 years off her life, but it was from things like infections and other disorders that run along with PsA. My doctor told me that it could mean as much as 5 years off life expectancy, but who knows what to expect in life and I could stumble due to the arthritis in my feet crossing the street and be hit by a bus, so yes, PsA contributed but the bus is what croaked me (I gotta admit I did laugh).
Don't look at it as you are sure to become totally disabled and die younger than expected. Enjoy life every day, even if you wake up hurting at least the pain tells you that you're still alive. I wake up hating the pain at times, but at least I'm still here and who knows what I'll see, do, or learn today. Dead lasts a long time,.
I was wondering the same thing but afraid to ask.
No one knows their life expectancy. A class mate of mine, 46 year old, just died in his sleep. Another class mate lost her 21 year old nephew to an asthma attack. Do not worry about life expectancy, live each day like it is your last!
I was just reminded of that today. A friend just passed away while on vacation. You just never know
I think I lost more of my life from the stress generated by trying to get the proper medication that actually works for me. I’m sure I am not the only who felt like finding a bridge to jump off of because of this.
Mataribot, I’m with you on that one. I went through a long period of waiting and searching for the right “recipe” too. I felt like I was “on the ledge” too, and I’m sure that period shortened my life considerably!
I read the study on symetric, lots of joints etc predicting early disability and mortality. I had fully symmetric, onset, over 36 joints, inflammation enough to make my legs go numb on one occasion (at least they didnt hurt). Scary stuff, but I did see the study was very old.
Then I read, as Jules says, that recent studies don’t show this, and they think a big part of the reason why is better treatment.
I was on MTX with low dose pred, not keeping the symptoms at bay (let alone preventing progression). It seemed pretty obvious I wasn’t the one getting the better treatment, so I got off my bottom, advocated for myself, and was lucky enough to find a treatment that worked quickly!
Now I’m so busy living life I’m positive something else is going to kill me first!
I am 45 and have had this since I was 16. Good days, bad days, but the 10 year disabled rule is NOT valid for me. 80+ perc of my body is affected, more with the arthritis than any rashes. I am not a quitter, and although I pay for it when I over do it, I receive satisfaction from hurting more, and earning the pain, versus hurting less, and doing nothing. Please do not claim that I am calling everyone quitters, this is just how I have to deal with my disease personally. Nothing kills me more than to be in pain and not have had caused it. So I may be stubborn, but the pain doesn't bother me as much if I have gotten something accomplished.
I have noticed that in the last 2 years, I am mentally beat, but all I can do is keep on doing the do. I am currently on remicade every 8 weeks, 20 mg methotrexate weekly, folic acid, sulfasalazine, and I am functional now. I would literally give all of my belongings to feel like I did for 5 years on humira. I was NORMAL, whatever that means. lol. Keep on fighting for yourselves, no one else can do it but youuuuuuu.
The way PsA made me feel for the past few years I sort of knew I wouldn't live as long as my parents-well, at least not as long as my 89-yr old mom who is still going strong! Nor, would I want to live that long if it meant severe pain and disability for a lot of years. I will do a blog about how Enbrel may help me have a better outlook.
What you say makes total sense to me. I am stubborn about the depression that can go with chronic illness. I feel like I have lost control of all other parts of my life. The only thing I have control of is how I act. I'll be damned if I will let this make me Moody or irritable
christopher said:
I am 45 and have had this since I was 16. Good days, bad days, but the 10 year disabled rule is NOT valid for me. 80+ perc of my body is affected, more with the arthritis than any rashes. I am not a quitter, and although I pay for it when I over do it, I receive satisfaction from hurting more, and earning the pain, versus hurting less, and doing nothing. Please do not claim that I am calling everyone quitters, this is just how I have to deal with my disease personally. Nothing kills me more than to be in pain and not have had caused it. So I may be stubborn, but the pain doesn't bother me as much if I have gotten something accomplished.
I have noticed that in the last 2 years, I am mentally beat, but all I can do is keep on doing the do. I am currently on remicade every 8 weeks, 20 mg methotrexate weekly, folic acid, sulfasalazine, and I am functional now. I would literally give all of my belongings to feel like I did for 5 years on humira. I was NORMAL, whatever that means. lol. Keep on fighting for yourselves, no one else can do it but youuuuuuu.
Don't get me wrong, I do get moody at times, but I sleep better knowing that I didn't let it kick my azz, like I knew it could. Getting out of bed the next day is a whole different story, because as you all know, it is depressing that the first thing you feel in the morning is like you got hit by a truck, but mentally, you know that you somehow "earned it" makes ME feel better about it. This is not something I had to change mentally, because at 16, when I was diagnosed, I didn't know any better. It sounds like most of you were received this years later, when you realized how it was going to effect you daily. I became accustomed to it, and for that, I feel blessed. Getting an ailment earlier in life, I believe, is better than have lived without it, causing you to change your life. I cannot remember how life was without this. I don't know what person I would be without it because it drives me to do more, to prove to myself I am still IN THE GAME. I hate losing WAYYY more than I love winning(quote from Moneyball) and there is a difference between the 2. I know that I am a crabbier person at times,
I know that I am less forgiving at times, but no one understands. anyone who has not experienced this disease cannot communicate with you. This is a good place. I thought I could live without this site, but you must know your limitations and accept that you cannot do it alone.
Great attitude Jen. This is the same as losing weight, No one else can do it for you. You have to get up and accept that pain is worth the gain.
Jen said:
I read the study on symetric, lots of joints etc predicting early disability and mortality. I had fully symmetric, onset, over 36 joints, inflammation enough to make my legs go numb on one occasion (at least they didnt hurt). Scary stuff, but I did see the study was very old.Then I read, as Jules says, that recent studies don’t show this, and they think a big part of the reason why is better treatment.
I was on MTX with low dose pred, not keeping the symptoms at bay (let alone preventing progression). It seemed pretty obvious I wasn’t the one getting the better treatment, so I got off my bottom, advocated for myself, and was lucky enough to find a treatment that worked quickly!
Now I’m so busy living life I’m positive something else is going to kill me first!