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Thread: Any one have RA?

  1. #1
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    Any one have RA?

    My brother got diagnosed not too long ago like 7 months ago. He is so worried he won't ever ski again. I thought I'd ask if anyone had it and if they were able to ski and how much.
    Quote Originally Posted by SpinalTap View Post
    I'm really troubled by whatever pictures the Don had to search through to arrive at that one...

  2. #2
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    Thats too bad. It is a Lot of information to take in for him and it sure poses a lot of questions.


    Today's medications really make life a lot more livable than it was many years ago. Patients today rarely have chronic deformities which limit them from doing even the smallest tasks. Many patients today lead relatively normal lives.

    He will definitely find this acute phase hard until his docs find the right meds for him and they have a chance to start working. He may find throughout his life that he may have flares. Some people when diagnosed early and treated well can sometimes go into remission - giving them a more normal life.

    Last year I stayed with a couple while I was traveling. My host who was in his late 50's was a snow host at his local mountain and skied around 90-100 days a year. We chatted about it a couple of times. He said every once and awhile he was pretty sore and had to take some time off. But clearly he is getting some goods time on the hill!!

    I don't speak from someone with RA, only from my experiences in life (such as above) as well as patients I have treated.

    Hopes that helps some. There are lots of support groups out there which can be very helpful. Lots of communities also have local arthritis societies which can give advice. I would suggest he stay away from google. It doesn't do much other than swerve to freak him out.

  3. #3
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    Cool thanks for the heads up. I need to sweat him about a support group for sure.

    I know he is doing a lot better now but shit for the first few months he was in rough shape. His wife was gone one weekend when he was first diagnosed, so I stayed over to help. It was like he was paralyzed he was in so much pain. To get him to the bathroom to pee was excruciating, I felt so bad for him!

    And about google, for sure that is why I wanted to mention it on here. There are SO many conflicting sources. Especially with diet.
    Quote Originally Posted by SpinalTap View Post
    I'm really troubled by whatever pictures the Don had to search through to arrive at that one...

  4. #4
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    With the introduction of the new disease-modifying RA medications, the whole course of RA has been re-written. People are much more functional with fewer long-term deformities. May not always be easy, but your brother has every reason to be hopeful and look forward to plenty of powder turns. Best wishes....
    Originally Posted by jm2e:
    To be a JONG is no curse in these unfortunate times. 'Tis better that than to be alone.

  5. #5
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    Quote Originally Posted by Orthoski View Post
    With the introduction of the new disease-modifying RA medications, the whole course of RA has been re-written. People are much more functional with fewer long-term deformities. May not always be easy, but your brother has every reason to be hopeful and look forward to plenty of powder turns. Best wishes....
    That is great news. This is the kind of stuff you don't really get from your Rheumatologist cuz they have to cover their asses.
    I heard life expectancies are cut due to life long medications though, anywhere from 15-20 years?
    Quote Originally Posted by SpinalTap View Post
    I'm really troubled by whatever pictures the Don had to search through to arrive at that one...

  6. #6
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    My wife was diagnosed with it about a year and a half before we were married. She would sometimes lay in bed sobbing because of the pain, and in fear of what her life might be like. She went to some specialists, and got on the drug Enbrel. It is really expensive, but her insurance covers it. It has been a huge help. She can do pretty much anything she did before this illness afflicted her.

    We tried modifying our diet, and some more holistic things, but we could not seem to do anything to really help. The drug is great, but it is kind of disappointing to deal with the rheumatologists. They prescribed the drugs, but really did not spend any time looking for any causes or triggers of the disease.

  7. #7
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    Thanks Jethro. I have been seeing the same frustrations as your wife. I hear people talk about how it has to do with diet but they don't have any diet suggestions anywhere, except chiropractors but as soon as you show interest they try to shove it down your throat along with a bunch of weird supplements and shit.

    I did hear some people have successfully put it into remission with diet but I want to talk these people and not someone trying to sell something. I am a nurse so I have been looking into it a ton....
    Quote Originally Posted by SpinalTap View Post
    I'm really troubled by whatever pictures the Don had to search through to arrive at that one...

  8. #8
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    My wife is a nurse also. Even with her medical training, she has a tendency to drift towards holistic and eastern medicine. It is easy to do that when the Dr.s only want to treat symptoms and not causes. Her newest supplement is something called Wobenzyme. It just showed up a week ago so no word on it yet. The other thing is she takes her Enbrel once every 10-14 days instead of every week like it is prescribed. I am not sure it is a good idea, because she sometimes feels some pain in her hands and shoulders before she takes a shot, and pain is indicative of inflammation. The inflammation is the cause of the joint degeneration. It is a trade off, take a lot of powerful drugs with unknown track records, or risk joint damage.

  9. #9
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    Thanks Jethro. I have been seeing the same frustrations as your wife. I hear people talk about how it has to do with diet but they don't have any diet suggestions anywhere, except chiropractors but as soon as you show interest they try to shove it down your throat along with a bunch of weird supplements and shit.

    I did hear some people have successfully put it into remission with diet but I want to talk these people and not someone trying to sell something. I am a nurse so I have been looking into it a ton....
    Quote Originally Posted by SpinalTap View Post
    I'm really troubled by whatever pictures the Don had to search through to arrive at that one...

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