Does anyone know? | Arthritis Information

Do people dx'd with moderate to severe RA ever go through their whole lives without being disabled by it?

Is that a reasonable thing to hope for?

Linncn39424.4620138889

Lin - I looked into that early on. This is what I discovered, and if I am wrong, I would appreciate the input because this is important to me since I am old :) Thanks in advance.

I believe it comes down to moderate or severe once its diagnosed and proper treatment inititated; coupled with that age number; then the number of the abnormal RA factor blood test at diagnosis. It's a combo of about three different things. It breaks down into percentiles at some point, where you find your answer, but I have been unable to find a table showing how this risk factor methodology works. C

justsaynoemore39424.4675i think the answer all lies in when you were diagnosed. 20 years ago damage was inevitable..now not so much. Different treatment protocals, different medications exist. We've learned that you need to stay active and exercise regularly. geez, Buckeye, we posted at the same time - LOL justsaynoemore39424.4687152778

I guess that depends in part on your definition of disabled. It's easiest to measure in terms of work disability. I think there have been some studies on RA work disability rates...here's a link to two abstracts:
http://www.arthritis.org/disability-women-ra.php
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db =PubMed&list_uids=17299844&dopt=AbstractPlus

If after 10-15 years, half are disabled, then that means that half aren't. And advances in medication are expected to lower that rate.

IMHO, it's a reasonable thing to hope for, but not to rely on. I think in large part it depends on the health care you receive and how you individually respond to treatment.

Linccn, I don't think anyone can know. My friend's Mom has had RA for 30
or 40 years and she was supposed to end up in a wheelchair and she's
still going strong, although she uses a cane somedays. Sometimes RA
comes on strong and then turns mild, and vice versa.

Even with statistics we can only see what happened to the people who
came before us. The medical world changes from day to day, with new
treatments coming out and bionic toes and such, and then there are our
own personal journeys. My approach is to never stop looking for things
that will improve or help my condition. I believe many people have been
cured by various means and I will always be looking for the one that will
work for me.

And really at some point it's all Que Sera, Sera.Everyone is different. Someone may have terrible RA and respond to treatment. My uncle is a chiropracter and told me the majority of his patients with RA had only a few flares over the course of there life time. Well i think catching it in early stages would certainly help.

I am going to fight it everyday of my life so I don't ever get to that point!!

Each of us react to moderate to severe RA in our own individual ways. It has to do at what age you were diagnosed and at what level you were diagnosed, how well you respond to treatment, and other health issues that you were being treated for at time of diagnosis.

No matter how much you fight it, sometimes disability happens. Other organs are attacked by RA and no amount of exercise and healthy eating will change that. It's the nature and course of the disease. One can stave off losing the use of their hands or legs with exercise. For some people there is no response or remission with the dmards and biologics. The disease continues to destroy the joints and disability happens. I wish it were as easy as "to fight it everday" but it's not. There are factors involved beyond our control.

Lindy

Thanks! I shall continue to hope for it then, and not stop taking the best care of my body that I can. I mean, I wouldn't have stopped doing those things had I gotten different kinds of responses. I just find it frustrating sometimes that the RA prognosis is so "up in the air". I'm the kind of girl (ok, middle aged women) that reads the last chapter. I like to know in advance what to expect. Wait and see is tricky for me.

*edited to correct a typo

Linncn39424.6148032407Justsaynoemore, do you know if more points are given for diagnosis at an older age? Is it worse to get RA later in life? I have read conflicting information on that.

Inflammation equals erosion and erosion equals disabling, it's that simple. With todays drugs there is no need for inflamation and no reason for disabling and so that's why it is so important to take our drugs that block infamation and why it's so important to change drugs until one is found to put us back to close to normal as I am. As good as I think I am, my doctors think I should be better and want me to switch biologics, go figure. They have told me that with todays drugs there is no reason for anyone to be crippled with pain or deformity. Cool huh?

LEV

PS,

The cure should be here in two to three years.

LEV

I have been on all available dmards and biologics and so far have had adverse allergic reactions to them all, except so far Enbrel which is one I skipped early on. So it is not always just as easy as taking todays drugs and be free of inflammation.

Sometimes it is really hard to convince yourself to move on to another drug that might put me back in the hospital close to death.

For some of us, it is harder to continue to hope for not being disabled, but I keep hoping it will come before I am not able to get around at all.

But, sometimes it isn't quite as simple and easy to have an answer to these questions.

I did read a study that looked at data of disability and the number of people diagnosed with RA and were disabled 10 years ago was 50%. The number has moved down to around 40% now.

People can be disabled from the pain, fatigue and depression not just joint deformities.

Only God knows. I try not to think about it but it's always there. I have used a cane already and I am 41. Last Thursday I woke up feeling wonderful after taking my first enbrel injection! No pain, no stiffness, and the energy went through the roof! It lasted several days so I had great hope for the next shot. Well, took shot on Tuesday and by Thursday, we had snow, now freezing rain, and the pain and stiffness is back but my energy is better. So who's to say, only time will tell. RA is so up and down. I do get tired of getting hopes up then let down, then up, then down,again, again, and again, I think my expectations are way too much. I want to be cured but I have damage in my right & left hands, and left ankle.

I hope and pray everyday that a cure is around the corner!

I was diagnosed a year ago. Since then I have been on Methotrexate, Embrel, Humira and Remicade (not all at the same time of ocurse). I have tolerated all these drugs very well with almost no side effects. But I have had absolutely no results from any of them.

The only thing that helps at all is prednisone. Thank goodness for pred and pain pills!

My RD has switched me from Methotrexate to Avara and we are also trying 100 mg Doxcycline hoping something clicks.

It is a little discouraging to have all these wonderful drugs and not have them do a darned thing for you! When I went for my infusion I would talk to others who said they felt better before they left the Dr.'s office that day. Amazing!

So I agree with the comment that someone made that you can fight it really hard but sometimes that just isn't enough....

Nancy - sorry, that was about a year and half ago when I was finally diagnosed and I have no idea where I read that, but maybe some googling on your part will get you close to a site with that information. I was still in the "AMA approved sites" at that point, so it might be easy to find.

But, I was 50 then, pulled an initial RA of 150, and it landed me in the 97% percentile of being in the category of no response/bad outcome/I am screwed number. And I have to also agree that there are so many factors, like soft organ involvement, that no one can predict this disease, like if you will end up in a wheelchair or only have one hard flare and it's over. Good luck on your end - Cathy

Linncn, I asked my RD this question as I am mild to moderate. I asked him
if it could ever change into severe and he told me that with my positive RF, it
was likely, but very unpredictable. He said that with treatment, it can slow,
remission, or advance. There was no way to know. He also told me that one
treatment which will work for a while, may all of a sudden stop working and
I would have to go to another one. He told me that it is a frustrating disease
to treat because there are no hard fast rules. It is so individual. I think all
we can do is treat as aggressively as possible and just treat our symptoms,
day by day and hope that it does not progress. We also need to make sure
our lifestyles are as healthy as possible. Lev

.... The cure should be here in two to three years.

What is that?

Anna
Maryblooms. I was also reading where a large number of RA sufferers quit
their jobs within 10 years of diagnoses. Does this mean, that they advance
in their disease? This statistic worries me a bit.

when I was first diagnosed I went to the arthritis foundation website... the article I read said that most people are disabled (can't work) within 5 years of being diagnosed. It scares the crap outta me too. I have to work to pay my bills, there's no one but me to take care of me!