A couple of weeks ago I read a post (not sure if it was here or another board) where the person made the comment that 10 or more years of RA drugs (he didn't say which ones) can eventually cause a premature death of the patient. I'm assuming this was a layman talking, but his comment has been bothering me ever since. It will be four months before I see my RD again and I'd like an answer before then. Have any of you discussed the long term effects of the drugs you take with your RD? Have any of your doctors said there is a definite link or pattern that indicates long term use of RA drugs cause premature death for various reasons? This is very disturbing since I expect to be on these drugs for a very long time and don't really have much of a choice if I want a reasonable quality of life. At 55, I can expect to be taking these or other meds for longer than ten years and now I'm worried about my future. What say you?
I'd like to see that post. There's a lot of unproved, unscientific therories that float around regarding the auto immune diseases. If it was written by a lay person based on so and so said this then I'd be reluctant to believe it. I need more science backed theories before I worry or make a life changing decision. I have talked to my RD about RA shortening my life span and he feels that if the RA is controlled as much as possible then there is no reason not to live to the ripe old age of ____ (put a number in) and that he doesn't feel the drugs will cause a premature death unless there is a deadly side effect. Not sure this is based on science or is his opinion based on years of experience but I'll take his word for it.
I've done some extensive research and have yet to read in print that the RA meds were the cause of a shortended life span. Let me know if you find the thread. Am curious. Lindy
RA in itself already causes a shortened life span. Sad, but true. If you do not get help for it, it attacks your organs. If you do get help for it, you live a more reasonable quality of life.
Either way you cut it, your life is shortened by one thing or the other, but who is really to say, that either one of them will shorten your life span? Like the commercial for cancer treatement centers of america say "There is no experation date on your toe."
Lin, I wish I could remember where I read that post. If I find it, I'll let you know. In the meantime, I'm feeling a bit better hearing what your doctor said. Positive thinking is key and the voice of experience, your doctor, is a good one to listen to, since he/she has seen a lot, no doubt. I'd like to hear what others' doctors said and look forward to hearing what my own doctor has to say about it four months from now. Somehow I can't picture him saying, "Yes, the side effects will eventually shorten your life span, but so will the RA so pick one."
Joonie, I never heard that expression about the expiration date. I like that!
Yeah I liked it too. That is why I retained it.
I've also seen clinical studies which differ from the above but I like this one better.
K.
Katalina, the page could not be displayed. Is there another way to access the link? I'd really like to read the article. Thanks. I have not heard that prolonged use of RA drugs can shorten your lifespan. I think if that were true - I'd be gone by now. I was dx at 5 and have been on massive RA drugs for the past 14ish years. I've had everything they make, so far, (with the exception of the infusion therapies) and still haven't heard of this. My rheumy is so fantastic with me and describes everything about these meds, even how they work and why they work. A lot of these drugs we are taking for RA are also taken by cancer patients too. They work tremendously well in both diseases. Having RA does shorten a life span, but by how much?? Not sure on that avenue also. It doesn't bother me, I am actually looking forward to the afterlife .... no pain no suffering no sadness .... how wonderful!!Jesse88: Just Google: clinical data lifespan with RA. The NIH data link that I posted is the 2nd from the top.
I proofed this link when I posted it and it was fine but when I clicked on it just now, it didn't work. Hmmmm.
K.
It just worked for me. And, I'm sorry to say, that study doesn't support the conclusion. Look at it this way - 150 people and 24 dead within 7 -14 years. That's 16.6%. It also looks 'flawed' in that the abstract doesn't differentiate between the 2 cohorts. I'm going to find the full study because the abstracts are often not what the study says.
And I think it was me that posted about the "dead in 10 years" thing. Both Karin and I had seen that stat on one of the main RA websites. It's what freaked us out and made us look for other options. I think what I saw said "60% mortality rate in 10 years". Again, being a tech moron, it was before I learned how to 'save to favorites'.
Joonie is right, RA itself has a shortened life span. We just have to figure out how to get around the statistics.
No problem!
Pip
Mortality/Morbidity: RA does not usually follow a benign course. It is associated with significant morbidity, disability, and mortality.
http://www.emedicine.com/med/topic2024.htm
Median life expectancy was shortened an average of 7 years for men and 3 years for women compared to control populations. In more than 5000 patients with rheumatoid arthritis from four centers, the mortality rate was two times greater than in the control population. Patients at higher risk for shortened survival are those with systemic extra-articular involvement, low functional capacity, low socioeconomic status, low education, and prednisone use.
http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-a rthritis/rheum_clin_pres.html
Great now, I am killing myself with the ole pred. I guess better to be on a drug that does something for me, than to be taking cocain, meth, or some other illegal drug or even drinking myself to death. Either way probably would be killing myself to death.
http://aramis.stanford.edu/downloads/Full%20HAQ.pdf
Pip...after reviewing the full text of the site I posted, I agree with your assessment.
What do you think of this study and questionaire? A little more in line with reality?
K.
It shortens life by 7 years? Gees that the same amount you lose by smoking!
I should not find this funny but I do. (I smoke and have had ra since I was a kid.)
I also have read that it shortens life by 4 years and that we die of heart disease just like the rest of America. Those of us treated with DMARDs out live those not treated.
P.S. Statistics are accurate for populations. They are not accurate for individuals. Long may the exeception to the rule live!
So, does that mean if you smoke & have RA you will shorten your life by 14 years? Or does it just go on to still be 7 years?
Either way, only thing guaranteed in life is death.
http://ard.bmj.com/cgi/content/abstract/59/12/954
PIP: no way I believe "60% mortality in 10 years"
Alan
Alan I saw that one, but that was about the only one that said No increase.
I was trying to find the one Pip! was talking about and those were the only 2 that even came close to what she said.
Alan
joonie
I really do not know but 72 - 14 = 58. I have 4 years and 2 months left. I don't have time to worry!
Taxes are the other thing you are guaranteed.
Alan
Jesse. Something that I have read time and time again is that inflammationI truly apologize if I gave the impression that I believed the 60% mortality thing - just that I saw it somewhere in the haze of "OMD I've got RA and I'M GONNA DIE HORRIBLY!". But I did see that somewhere and it truly freaked me out. I think I'd posted before that I thought "my baby is 5, I'll be dead when she's 15, and she's going to use my death as a reason to act out, get into trouble and I'M NOT GOING".
I do believe that we need to bring our labs into line and use our own sense of what is happening with our bodies. We know if we're inflammed. We know how we're doing.
Nor do I think the tests are a reliable indicator of what we're experiencing. I've seen too many posts of "I'm in remission and I feel horrible." If you're in remission you should not feel horrible. We can't rely on faulty tests to tell us how we're doing. If your meds say you're doing fine and you're not - LOOK into the anti-inflam diets etc. to help your body along. The meds can only do so much.
Jesse - I chose AP because everything I read at that time said "they're treating a symptom" to me. Only AP said "we're going for the cause."
Pip
Good point Alan!
When discussing mtx with my doctors he used the expression "do you want quantity or quality" due to the nature of mtx being toxic
Lynn -
If the meds control the inflammaion so well, how come we still get lymphoma and heart disease. Especially with they push to get us on these meds so fast.
This is another thing I don't understand. Nobody anywhere is going to be able to track how these meds effect us until they change how deaths are recorded. Remember when AIDS started and cemetaries and funeral parlors refused to handle AIDS patients? There were famous people who died whose death certificates said they died of the secondary result of AIDS, not AIDS itself. As time went on and people were less frightened or hated-filled, the push was on to list AIDS as the primary killer.
We don't have that. Look at the study Katalina posted. 24 deaths and only one recorded the cause of death as RA. The other causes were 'stroke' or 'heart disease' or "whatever'. But those 16.6 percent were all dead within 7 - 14 years of the disease and most of the causes were somehow related to inflammation and/or RA. So why don't the death certificates say "heart attack secondary to RA?" Get my point?
If we want more money for research - we'd better have some way to prove we're at a higher risk for "whatever".
Hugs,
Pip
For some people the meds do control the inflammation very well...ie. My sister-in-law who has had RA for 16 years. She is very active and healthy. For me, not so much. I think a great deal of it has to do with genetics. I know you disagree, but my father had an autoimmunne illness and died of a heart attack in his 50's. I know I'm high risk. I have refractory Ra and I've had it for 8 years. The meds help lower my inflammation but just not enough. When I was using Humira, the inflammation was way down, I felt great and to had very little pain or stiffness. From what I've read, in the medical community it is pretty well accepted that RA patients are at higher risks for heart problems..I don't think there is any disagreement there, at all. I get your point, I'm just not so sure I agree with everything your saying. that's a huge surprise isn't it.. LOLLOL
I'm not saying people have to agree with me; I'm just saying we need more info...and we never get that. How do we make informed decisions if nobody is given clear choices?
You know, a lot of the problem is 'us'. So many of us don't keep charts of what's going on in our bodies. As a person with PRA, if some doc had told me "we're giving you X to bring your inflammatory markers down" and I was watching X and it wasn't coming down, I be more inclined to ask him "so, what are we going to do now?" But we trust these guys and they seem to have this desire to 1) not be questioned and 2) seem all-knowing and we just leave the med choices up to them.
I don't know - if my numbers were still out of whack after X amount of time - I'd darn well be looking into 'diets' or whatnot to see if that could be a reliable inflammation indicator reducer.
Pip
Been there, done the whole diet thing..from elimination to antimflammatory. They didn't help either. I do trust my doctor's and I'm not an easy patient. I have questions, a lot of questions...it's just sometimes, I don't like the answers. I don't leave my med choices up to anyone but me. That's my job, to decide what I think will work best for me....I'm lucky, I have a lot of help from my daughters. They always have my best interest at heart and they can answer my questions with a bias....well, except they would move heaven and earth to make their mom well.joonie
I really do not know but 72 - 14 = 58. I have 4 years and 2 months left. I don't have time to worry!
Taxes are the other thing you are guaranteed.
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As for the prednisone, I never really took much of it anyway, never really needed it. my RA is mild compared to some and since the bad out weighs the good, I've decided not to take it any more. If I get a flare, then maybe so. but other wise, I just don't want it in my body. And since I've only had one major flare in two years, I think I'm in good shape.
I also try to make healthy eating choices at least 80% of the time, with fresh fuits and veggies, keep my fat intake low, exercise as much as my body will let me, eat plenty of whole grains and watch the starches, drink lots of water. I feel that my diet is something I CAN control, and its already been proven that a healthy diet does help prevent other diseases and miladys. Will it stop my RA? No. Will it keep me alive longer? Don't know, but it can't hurt.
We all have a responsibility to ourselves and one another when it comes to posting results of certain studies and comments made by lay people.
Some people don't understand the studies; they look at the last sentence and see that the death rate is higher for RA individuals and don't take in account all of the other variables. I've read studies and scared myself like Pip did with the death statistic comment. Studies and comments should be prefaced. That's why this thread is so important to the original question. We're getting some explanations and other studies are being shown and discussed.
Remember, the bottom line is we're all going to die. I choose the quality of life route. I'm losing weight, don't smoke, live a pretty decent life, have no stress, and have close family and friends. These things make life better with or without RA.
It's not how long we live, it's how we choose to live. Lindy