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I was just diagnosed with Rheumatoid Arthritis and need a little help from the Hive


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My family doc is pretty sure from my symptoms and bloodwork, although I have not yet seen a rheumatologist. He is working on getting me in with someone.

 

I just had baby #6 about 4 months ago, and I am really worried about this. I have a lot of years of caring for little people ahead of me. I don't know anyone with this, and I would love to hear from someone who has it, or has a loved one with it, or really anything. I want the good, the bad and the ugly. I have looked online enough that I don't need to be sheltered from how awful it can be. I just want information. Apparently it can take weeks to get an appointment with a rheumatologist. Can anyone give me first- or second-hand information? I know it does not necessarily have to be as bad as it used to be, the meds are improving, etc. I know the basics of the disease. I guess I just would love to hear from anyone who has dealt with it personally.

 

thank you, Amy

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My family doc is pretty sure from my symptoms and bloodwork, although I have not yet seen a rheumatologist. He is working on getting me in with someone.

 

I just had baby #6 about 4 months ago, and I am really worried about this. I have a lot of years of caring for little people ahead of me. I don't know anyone with this, and I would love to hear from someone who has it, or has a loved one with it, or really anything. I want the good, the bad and the ugly. I have looked online enough that I don't need to be sheltered from how awful it can be. I just want information. Apparently it can take weeks to get an appointment with a rheumatologist. Can anyone give me first- or second-hand information? I know it does not necessarily have to be as bad as it used to be, the meds are improving, etc. I know the basics of the disease. I guess I just would love to hear from anyone who has dealt with it personally.

 

thank you, Amy

 

I'm sorry about your condition. I'm glad you got a diagnosis. My mother has rheumatoid. She has had cycles of flare ups and more functional times. She has been on prednisone, which offers some help. She had gold shots when I was in high school, the side effects of which were unbearable. She is on self-administered shots of Enbrel right now, which help her. My mother has a tendency to not stick with a course of treatment, as she gets irritated with the side effects, and forgets what having the disease untreated is like. I don't know if a doctor would prescribe Enbrel for you or not. My thought is that, as an immunosuppresant, it may be a bad idea for you to be on it with little kids around.

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My grandfather has RA, but that is all the experience that I have with it. He was on prednisone for 6 weeks until the methotrexate kicked in. Meth. is the only medication he is on now, because pred. can mask symptoms of infection among other things so it is not a good long term med. I don't know what your doc will put you on, but it will cause your immune system to be suppressed (my guess is you already know that it is an autoimmune disorder and you must keep your immune system from attacking your body which causes pain). Some people need meds all the time (like my gf) and others do not. He is doing very well now with no pain or any symptoms of the RA. He does have to go get blood work done every 6 weeks to check his WBC, ANC and his liver function (several numbers there). They adjust his meds accordingly.

 

Hopefully your doc will have some answers for you and can get your RA under control quickly.

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do you research. I don't know anything about RA but believe that diet restrictions can be hugely beneficial. I don't know if there are beneficial herbs and/or supplements but I'd try a more natural route to see if you can relieve symptoms. If not, at least you know you've tried.

 

I hope you have many years without complications.

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I was dxed by my personal that I had scleroderma last year. Which scared the bejeezers out of me. He said I needed a rheumatologist for a definitive and to get help for future. I was a mess.

 

The internet scared me more than anything. It took six mos. to see a rheumo and by than I though I would be dead.

 

I saw the rheumo, he looked at my hands and said I dont have it and sent me on my way. No tests, no nothing. I was livid. Instead of wasting another six mos. of my life. I just live w/whatever I have. I have restricted my diet and stress which helps. I think that is the best thing.

 

I did, however read the other day that fresh pineapple helps w/arthiritis. The enzyme is supposed to help. Just a lil known fact.

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My family doc is pretty sure from my symptoms and bloodwork, although I have not yet seen a rheumatologist. He is working on getting me in with someone.

 

I just had baby #6 about 4 months ago, and I am really worried about this. I have a lot of years of caring for little people ahead of me. I don't know anyone with this, and I would love to hear from someone who has it, or has a loved one with it, or really anything. I want the good, the bad and the ugly. I have looked online enough that I don't need to be sheltered from how awful it can be. I just want information. Apparently it can take weeks to get an appointment with a rheumatologist. Can anyone give me first- or second-hand information? I know it does not necessarily have to be as bad as it used to be, the meds are improving, etc. I know the basics of the disease. I guess I just would love to hear from anyone who has dealt with it personally.

 

thank you, Amy

 

My ds7 has JRA, and has since he was 2. I'm sorry you're having to deal with this :grouphug:. I can't really answer any questions, since JRA is a bit different from RA, but you should contact Remudamom if she doesn't see this thread. She should be able to answer a lot of your questions (she has RA).

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I don't know anything about this, but my husband works in medicine. I just read your post to him, and he said that if you try Glucosamine and Chondroitin early enough, you might get some relief from that.

 

I do know from friends with another auto-immune disorder that regular sleep is essential -- go to bed at the same time each night, get up at the same time each day -- to get your body into a good pattern. I'm thinking this will be pretty tough for you to establish with a newborn, but when it's possible, it may be helpful to you.

 

I had a friend in college with RA, she said she had to move in order to be able to move. By this she meant that she couldn't stop exercising or working due to pain, but wanted to keep her body flexible and mobile to push the disease out of her joints.

 

I wish I could be of more help to you, Amy! I will pray for you, and here's a :grouphug:!

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My father was diagnosed with RA when he was 40. That was 38 years ago and all they did back then was push NSAIDS and more NSAIDS. He had his knees replaced more than once, his hips replaced more than once, his shoulders, his neck fused, teflon hinges replaced the knuckles in his hands and feet, and his ankles fused, and probably some more than I can't remember.

 

His rheumatologist said he had the worse case he had ever seen. He died at 71 when his organs failed (due to all the NSAIDS). There is so much more that they can do now, and so many better drugs. Like someone else mentioned, do your research.

 

The rheumatologist told our family that RA was the only arthritis that was genetically passed down. Both of my sisters have been tested, and one has it and one doesn't. I refuse to be tested. If I get symptoms, I'll deal with it then. I can't see the reasoning behind worrying about it until I have to.

 

Good luck to you in your search for the best treatment. I'm glad there is so much research into this disease. They have come out with lots of info that should help you in dealing with RA.

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My mom was diagnosed with RA about 12 years ago. She's had relatively few flare ups and the RA has caused her little trouble. Unfortunately, autoimmune diseases can kind of snowball on each other and she was also diagnosed with Sjogren's Syndrome which has caused her more difficulties. Looking back, we believe RA was secondary to the the Sjogren's.

 

Best wishes as you begin the medical maze.

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I would definitely see a Rheumatologist. I also would not hesitate to seek second opinions when in doubt since medicine is an art and not a science as they say. Even the best doctors can be wrong as I learned in my 22 years of nursing. As for medical info, webmd.com, medscape.com, and mayo clinic are good starting points. Pharmacists are also very helpful for detailed drug info and all of the options out there.

:grouphug:

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My dd has JRA. I asked her:

 

It helps to use the simple physical ideas like putting pillow under joints. Hot water helps. Swimming helps a lot; I can do things I can't normally do. It doesn't have to laps or anything, just swimming.

 

She says the medicine does help but she doesn't know if her meds are the same as adults.

 

If you run, muscles get stiff and hurt for a long time. If you "just powerwalk", they only hurt a little.

 

In the mornings, it is the worst but a hot shower and time helps.

 

~~~~~~~~~~~~~~~~~~~~

 

As her mom, I'd say carefully (and prayerfully if that's part of your worldview) consider the cost vs. risk of each med. Some of the meds can quite heavy duty. The med choices are the biggest medical challenge.

 

You are also considered immunocompromised, so carefuly consider with your Rheumatologist those choices.

 

I may have more later.

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Tea Time was just diagnosed too.

 

I have Psoriatic Arthritis but it's about the same treatment wise. I'll make this short as I can.

 

I was diagnosed at 25 and told I shouldn't have any children. During pregnancy you feel fine but afterwards you get worse. After each pregnancy I did get worse, and after the triplets it was really bad. I was on different meds for years, so many I can't even remember them all. All sorts of combinations and dosages.

 

One really bad summer I couldn't walk very well. My mil would come almost every day and help with the children and housework. I sat in an office chair and the kids pushed me around. They waved good night to me because I couldn't take being hugged. First frost of that fall the pain reduced dramatically. That's the only time it seems the weather affected me.

 

I got to a point where the pain was really bad again and I lost most of the use of my right arm. My rheumatologist managed to get our insurance to pay for Remicade, which at that point was only recommended for RA, and not psoriatic. It was my last chance nine years ago (although there are more drugs now).

 

The Remicade has been a miracle for me and our family. It's almost like I don't have arthritis at all. Two weeks after starting treatment I was off all other drugs. But it is very expensive, my treatments cost $24,000 a year, and the insurance company is raising our rates so much that it might be better for us to pay for it ourselves.

 

Swimming is good. No sugar is good. Healthy diet, careful exercise. Keep your weight down. See a rheumy.

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Sorry I'm a little late to this one...

 

My MIL has RA. I also have been diagnosed with elevated rheumatoid antibody levels, but have elected to not go on medication since my joints don't hurt. They are only mildly stiff on occasion.

 

I would also recommend that you look at your diet. Too much sugar, processed food, red meat, and some nightshade vegetables can make inflammation worse. When I am really tracking my fruits and vegetable intake, lowering my sugar intake, eating more fish and drinking black or green tea, I do notice a difference.

 

I also have had a lot of help from taking a good Omega-3 supplement. I used to go to bed at night with a slight burning feeling in my joints, but that went away after taking my supplement.

 

My MIL's advice would be to go to a rheumatologist, but to also take as few medications as you need to keep your symptoms under control. She has had some liver issues with regards to some of the medications she was taking.

 

Other than that, keep an active lifestyle and try really really hard not to worry about it. Keeping yourself calm and not stressed out makes a HUGE difference as well.

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Jeepers Amy. Sounds scary!

 

I loveya, I'm praying for ya, and I'm right around the corner. I'll happily push you down a hill in your office chair anytime you need it :grouphug:.

 

Just makin' light...you'll be ok. You have a wonderful God who knows exactly what you need.

 

Be at peace today, friend. And if not, there's always Ralf and a back rub.

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