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My husband is 50 and has had RA for 30 years.  He's taken lots of different drugs through the years.  For about he last 7-8 years, he has done very well with Remicade and Methotrexate.  Enbrel was not as effective, but because of insurance  he had to use it for a couple of years.  He's been back on Remicade for over a year.  He also takes 5-10 mg of prednisone daily, along with folic acid.  I am just wondering if there is anyone on a different drug regime that might be effective.  According to our current dr., the drugs my husband is taking will cause his early demise, but he cannot function w/o them.  We made the decision to live as well as possible for a shorter time.  The alternative is to live longer, but be bound to a bed and in terrible pain.  Not a difficult decision for us.   Oh my goodness, well I would have to agree that quality of life is what you want, but I have to tell you, unless he has other health probs along with the RA, I woudl not for one minute believe that your time together will be less. Afterall, even cancer patients often  beat  the odds.

 
Nobody wants to be bed ridden, nobody wants to be ill, a supportive spouse makes all the difference in the world and you sound so very supportive.Your husband is a lucky man.
 
I do not know much about Remicade so I am no expert on this. Just try not to think that your life with him will be shortened due to the meds. He could make it to remission, he really could. I made it to remission with Enbrel for  abit......that is with a happy life. When you are overly stressed and not well recieved or cared for, your RA gets worse.
We've had 4 sons together and a wonderful life so far.  Randy's RA is not particularly active right now, but the meds are what keep it under control.  Remission is not something we even think about, I guess.  It's just become a part of life.  We've been told by more than one dr. that Remicade  is dangerous to use.  Add to that 30 years of prednisone, and we are talking about a lot of side effects.  Even though Remicade and Methotrexate are in the family of Chemo drugs, prolonged use at the lower dosage often causes cancer--which is resistant to chemo.  Deterioration of brain cells is another possibility.  We are thankful for every day we have and really do not live in fear of the future.  After all, ours is secure--whatever tomorrow holds! Thanks for the response!

Sorry to hear about your worries for your husband. I agree quality of life should be choosen over being bed bound.

Hoping the best for you and your husband.
Hi Kclay and welcome. I agree your husband is lucky to have you. I can't help with the remicade but I have been on enbrel for a few months and it seemed to work at first but now not so sure. Every drug has a risk but I would rather take that risk then risk being bedridden or crippled up in pain.
Be strong and keep the hope, one day they will find something to get rid of this awful disease.
Nice to meet you and come back and chat.
take care
Hi Kclay and I am glad you are here too.  It sounds like you have made informed decisions and unfortunately the decisions that all of us have to make with this disease and others like it.  I too worry about having some sort of quantity as well as quality...but if I were to pick it would be the quality thing!  I guess none of us knows how long we have on this earth, so we need to make the most of it....everyday!If he is doing so well on Remicade and MTX why doesn't the dr start to wean him off the pred? If he is still doing well after that I would think the next step would be to start decreasing the MTX in the hopes of eliminating it entirely. Of course not everyone is fortunate enough to be able to do this, and maybe this has been tried.

I think the jury is still out on long term effects of the biologics (at least as far as I know) and that they are "dangerous" because it lowers your ability to fight infection.
^ I would have to perhaps agree with hessalina there. Sometimes it is good for people who have been on long term meds to wean yourself off your meds to see if they are actually working.

But also, if you are quite desperate, (and have good insurance, or live in a country with universal health care) perhaps talk with your doctor about the new studies and treatments done in regards to autoimmune disorders and RA. I don't have the time now to find them all, but just quickly - I've heard that liver transplants from someone without RA to a RA sero+ve patient may convert the disease and even stop it, and there are rumours that stemcells can send to disease into remission as well. Good luck!
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I think maybe you mis-understood your doctor. Without the new medicines that are available for ra now, studies have shown that ra will shorten the average life by 7-10 years, not the drugs. The reasons being that ra attacks the vital organs and even our veins and arteries. It's now shown that it can even cause inflammatin in our brains along with our lungs, heart and pretty much anything else. The new drugs actually give us a chance to stay in line with the average lifespan. Of course prednisone causes blood plaque so it's best to keep it at it's lowest possible dosage so finding the right biologic is life essential. I would be more concerned with wreckless and/or aggressive drivers, drive safely, wear a seat belt and look out for the idiot drivers, 43,000 traffic deaths last year in this USA.
 
LEV
Lev, that's just more wishful thinking on your part. The new drugs have done nothing to increase life span. It was only a few months ago all the news was plastered with studies showing that the life expectancy of someone with RA is the same as it always was, even with the newer treatments.

Stop being such a moron and acting like you know when you don't have a clue.PS---KClay, it's scary but the truth is none of us can know how long we'll live so enjoy today for today. I often think of my friends mother, who one day at the age of 53 sat at the kitchen table worrying she wouldn't have enough to retire at 65, then got into her car, had a heart attack, and died. Statistics are one thing, but we are all individual RA snowflakes and your husband could live to be 100.Sometimes you just have to suck it up and do the best you can. When I went on chemo for lymphoma there were so many risks, but it was a no-brainer. I probably would have died in just a few months without it. On it, I nearly died from complications and afterwards, it hasn't been a free lunch either.

Get the best possible treatment for now. It's really all you have. We aren't promised tomorrow. A few answers to your questions:  AS far as leaving the drugs off to see if the RA is still active--on occasion he has had to miss a treatment (due to high blood pressure--197/129!, illness, insurance issues) and his inflamation and pain have come through in a big way.  As for reducing predinsone, he does take only as much as he needs to get through the day.  Some periods, he gets down to 1-2 mg a day.  The drugs and their efffect?  We had to sign about 10 different documents stating that we both understood the possible side effects of Remicade before his doctor would start it.  I don't think we were signing that we knew RA caused those problems. It was definitely the drug that might cause various life threatening problems.  That was when we sat down and talked about quality vs. quantity.   The most recent dr. we have seen (insurance issues, once again, mean we've had to change a few times) diagnosed psoriatic arthritis.  This was the first we had heard of it, and Randy has been treated for RA for almost 30 years.  Randy does have psoriasis, but he didn't for many years.  Besides, the symptoms and treatment for PA and RA are basically the same.  Anyone else been diagnosed with both? These arthritis drugs can in fact increase your lifespan as levlarry stated if it is affected by certain morbidities. Here is the link. Prednisone seems to be the dangerous one because of the osteoporosis that comes along with the long term use and fractures etc.
 
http://news.yahoo.com/s/hsn/20080307/hl_hsn/rheumatoidarthritisdrugsmaylowerheartattackstrokerisk;_ylt=AhCIYgMArV7ext3jDJ8wraeCSbYF
The fact is life is terminal.  Everyone reading this is going to die someday.  That is why it is so important to really LIVE and use the time we have.  Don't live a life of regrets, just make this a life to be proud of, and try to laugh and love everyday.  Sprinkle in as many adventures, large and small, as you can, and you will have a life well-lived.  [QUOTE=Rx2Heal] These arthritis drugs can in fact increase your lifespan as levlarry stated if it is affected by certain morbidities. Here is the link. Prednisone seems to be the dangerous one because of the osteoporosis that comes along with the long term use and fractures etc.

[/QUOTE]

That singular study only showed that risks due to cardio-vascular may be slightly improved with the use of RA drugs (actually "controlling inflammation" and also the accuracy of the study is questioned in the article). Besides heart disease, there are many other factors which increase the mortality of RA sufferers, and some of those risks are increased with the use of RA drugs. A simple google search shows that the vast majority of current research shows the life expectancy of people with RA has stayed the same as it always was while the life expectancy of the general population has gotten longer.

Sorry, I wish you were right. I don't want to have a shorter life expectancy any more than the next guy, but spreading false information isn't going to do anything to improve this situation.


Rheumatoid arthritis death rates still high
Updated Tue. Oct. 30 2007 11:41 AM ET

CTV.ca News Staff

The life expectancy of patients with rheumatoid arthritis has not improved over the last four decades, despite innovations in treatment for the disease, finds a Mayo Clinic study.

Rheumatoid arthritis (RA) is an inflammatory disease that attacks the joints and can lead to substantial loss of mobility. But the disease is also an autoimmune disease and takes a progressive toll on all tissues in the body, including the heart, kidney and liver.

For years, the disease has been associated with a high risk of early death. Researchers wanted to know whether with the remarkable improvements in longevity in the general population, the trend had extended to patients with rheumatoid arthritis.



http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20071030/Rheumatoid_071030/20071030?hub=TopStories

The way I look at it, no one can really know what their life expectancy is. There are just too many random factors. All you can do is not worry about it too much and enjoy being alive to day as much as you can.

Hi KClay, It sounds like your husband has had a long battle with RA and now PA has been added to the mix; I'm very sorry to hear that.  I also have RA and PA and it's been a long 11 years trying to manage both diseases.  There is always hope for remission.....I know because I've achieved remission from RA after 11 years of continuous struggle.  I've been on Enbrel, Remicade and am now on Humira and MXT.  I still have active PA and it seems to be getting worse with Humira.  Don't give up yet.  
 
I've read all the statistics about life span.  There are numerous studies and articles and it seems like each have their own little twist on the life span theory.  My only suggestion is to not take the shortened life span theory and stats too seriously. Try and enjoy each and every day.  I believe in living life in the present, the past is finished, the future is just that.  I can only control the present and I choose to enjoy every minute of every day with my husband, family, and friends.   I too chose quality of life, as I think most of us do.  I hope you keep posting.  There are only a few of us on the forum that have both RA and PA, so any input and information is more than welcome to us.  We'll try and help you two out.  Lindy 
 
   
This is the problem with the studies,
 
They can't take into consideration the biologic generation, us. We aren't dying, we haven''t died and if the studies were to make assumptions people like Gimpy would accuse the big pharms of paying off the studies. I did do some more research and found that the reasons for ra inspired deaths were gold medicines, penicilimine (or something like that) gastrointestinal deaths caused by dmards and inflamations of the organs. After more research I found that the average ra life is shortened by between 1.4 years and 2.5 years. Keep in mind that with the biologics the deaths from organ inflammation shoud drop. The deaths from dmards should stop and so in short, the future looks so bright, we really should wear shades.
 
Just go slow over the bumps in the road and never stop at the bridges just in case a gimpy-a-gogo is under there.
 
LEV
I would much rather find a gimpy-a-gogo under there than a negative pot-stirrer always trying to hurt people. 

Hi KClay, always check your information and like LinB says, you will always find reports for and against most topics.  Janie.

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