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Thread: RA - new diagnonsis

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    Default RA - new diagnonsis

    I've been a member of this site for several months due to arthritic pain in my hands. I have also suffered from sciatica for 20 years but that pain has taken a "back seat" to my current joint pain in my hands. I am in my mid 40s and lead a very active lifestyle.

    Well, just found out I have RA. Not really sure what this means but hoping to get some info from others on this site. I know it's autoimmune and many google searches act like I got some terrible disease while my family and myself don't feel this way. I just want to learn how to manage it.

    My hands have been painful (mostly in mornings) for several months. Over the past three weeks, I wake in pain and can hardly move them in the morning. I have been self medicating with tram (max dosage 100mg daily) but am considering stopping it. However, I do like the anti depressant side effect. I can't take them after 10am or I won't sleep well. So torn on that side of things.

    I am looking for non medicine therapies (diet, exercises, vitamins, etc). I am an avid runner, swimmer and biker and find my joints are stiffening up more and more. Doc put me on meds but none for the pain. I have tram and keep taking it but would love to not require it to even feel normal each day.

    What's even more interesting is that my husband is an orthopedic surgeon. (BTW I just read a thread about big pharm and you can't even imagine the money these drug reps pay to get docs on their side - seriously, it's disgusting and should be illegal.)

    Thanks for anyone who replies - I don't post that often but love to come here for "support" as I have my own pain issues and have a severe alcoholic brother - this site really provides me support in both those areas of my life.
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  2. @ethom, i have just received "arthritis gloves" which i got on ebay. basically they're fingerless gloves which warm and compress the hands. you need to wear them eight hours at a time , so i sleep in mine. i've only had them for a week, but i know people who work in them, so you might look into them. my one hand is especially bad, and the doc said the gloves keep tendons from shortening.

  3. #3
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    @ethom I am sorry to read about your diagnosis, and yes all the information you are given can be very confusing and worrying.

    I have had it in my knees, since being a child, so now have had both knees replaced. Having joints replaced doesn't stop the disease though as it is an autoimmune and in my experience it will attack any joint it wants to.

    You sound like you are doing everything right in terms of exercise and diet, but it will slow you down so try not to push yourself too much or you may cause damage to other joints.

    I have had various pain killers over the years and to be honest, I think what type works best, depends on the individual.

    I would also guess you have been given some kind of immuno-suppressants to keep the disease under control, I have been taking Methotrexate for about fifteen years. There are different types and they can have some strong side effects, but they do keep the disease under control as much as possible.

    Let us know how you are managing and I am sure someone will be able to answer any questions you have.
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  4. I have had Psoriatic Arthritis (RA's ugly cousin) since my mid 30's I am now 50. I was able to get on Humera and methotrexate early on. I have very little joint damage due to getting on the meds and staying on them. I

    am an ASE Certified Advanced Level Master Automotive Technician and having any form of arthritis is a real bad thing for this type of work. I was able to work as an active technician until age 47. It has caught up with

    me in the last few years. I'm starting to damage joints from swinging hammers and other types of heavy work. Reciently I was working on replacing ball joints in a 2004 Impala and after swinging the 5lb sledge to free

    the ball joints from the spindle I noticed that my right elbow swelled up to the size of a golf ball. I assumed it was all fluid but a quick trip to the Rheumatologist proved that I have deformed the joint. I am afraid it's

    time to hang up the tools for good. Very hard pill to swallow for me. I have been working full time in this industry since 1981. I will be OK it just is going to take time to get used to not doing the work I love.

    @ethom sorry if this post sounds all about me but the point I want to make is please get on some good meds fast and stick with them. It will keep you from having joint deformities like those

    arthritis knuckles. And also stay away from ball joint replacements and 5lb sledge hammers
    Last edited by dannyb; 05-06-2017 at 05:48 AM.
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    @dannyb, I am so glad I read your post. I am athletic, woman rancher, on a small scale, and I know about doing the work one loves. I had a knee partially replaced a few years ago.. due I thought to so many years as a runner, in our beautiful remote country .. great for spirit and figure..
    last few years I have watched one finger after the other start to look very embarrassing.. still pretty vain when I go to town, I now commonly hide my hands. It's affecting me worse and worse, and my GP who is far away. don't have too much need to see him .. (this board lets me help myself and my animals.. don't need his diagnosis or bill for a lot of whatever comes up...common infections, etc..) But, I have asked him what to do about my hands... some mornings another joint is swollen, and it is deforming them, besides looking really bad, they are starting to really hurt.
    His response (older white guy.. busy clinic) has been to tell me I just have to 'suffer'. Literally his words.
    I couldn't believe there was nothing to be done.. so have taken notes and he is in for a visit. are going tohave a visit and a chat!
    Little late, though.. my fingers are embarrassing.
    Thanks all for taking time to post, 4legsgood
    Helpful djrick Rated helpful
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  6. @4legsgood, i have a bad hand too and i bought some arthritis gloves which help with the pain. i sleep in them but my son has an employee who wears them all day at work. they also sell finger splints, which i might get as well. since i got the gloves, the swelling and pain has definitely reduced.

    i saw a rheumatologist and your doctor is wrong. if the tendons in your hand shorten too much, you will not be able to use your fingers and will need surgery. gloves and exercises help to keep the tendons supple. it is really ugly, but the worst is that i can't hold onto anything. i tried to sew something recently and it was agony. maybe it's time for a new doctor?
    Last edited by notcharlotte; 10-13-2017 at 11:18 AM.
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  7. @4legsgood I am happy that you have found my post helpful. Further joint damage is preventable but you have to get on the right meds. It will take a good biologic medication ( Humera,Embril etc.) and also a binder type med to go with it (methotrexate, Leflunomide etc.) They have some pretty tough side effects sometimes. Methotrexate gives me a 2 day hangover. The biologic meds are very expensive and you must have pretty good medical coverage.
    They do work and also help with the pain and stiffness. They will not correct the joint damage you already have.Sorry to say but I think surgery is the only option for that. You will need to see a real deal rheumatologist to help you. This is not something a primary care physician can handle. Please do this for yourself to prevent any more joint damage. Feel free to PM if you have any questions...I will help any way I can.
    Helpful 4legsgood Rated helpful
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    Definitely the worst pain in my life with my first flare. My husband basically carried me to the bathroom. Thank God, there are urgent care centers. 60 mg of Prednisone and time got me through. I never travel anywhere without it.Runs big time in my family and headed to the head of rheumatoid at Hospital for joint diseases in nyc. Plethora of meds to start but have tapered [email protected]“Dannyb”was forced retirement either . My rheumatologist insisted I leave a job I loved. I truly miss it so I know how you feel..
    Have to say he was right however I’m still adjusting and try an accomplish something each day,
    Time for bed......
    Helpful Blackbird123, djrick Rated helpful

  9. FWIW, I have read that Lyme disease is often misdiagnosed as RA.
    Helpful djrick, Sushi Rated helpful

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    @ethom I'm glad you were able to finally get the proper diagnosis that will hopefully open the door to many effective treatment options and slow this progressive and painful disease process. I'm sure you will get some great advice from the people on this forum and other RA forums. I've heard swimming and yoga have been helpful with the symptoms of RA.
    If your RA progresses, you may unfortunately look into medication and will deffenitly be supporting big pharma if you go the biologics route!!
    One common treatment option is enbrel ($800 per injection and usually 2x weekly) These medications are commonly taken with an auto-injector that safely and precisely delivers the medication subcutaneously. Common injection sites being thighs and stomach.
    Depending on your insurance, you may have to try less expensive treatment options first such as methotrexate. This oral medication that's actually considered a chemotherapy agent acts by decreasing the rapid proliferation of cells. The problem with this medication is the common side affect of nausea and the user cannot consume alcohol. I wish you the best and suspect that relief is on it's way to you!!
    Last edited by Insider33; 11-07-2017 at 10:47 PM.

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    Quote Originally Posted by Blackbird123 View Post
    FWIW, I have read that Lyme disease is often misdiagnosed as RA.
    I had a series of tests and one was for the rheumatoid factor. My. numbers were really high. I too have heard the correlation between lymes and joint disease. I don’t think you have the RH factor,though.
    Helpful Blackbird123 Rated helpful

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    @4legsgood Please, please do NOT be embarrassed by your hands! It’s not your fault for the way they look. I see that your post was four weeks ago and really hope you have followed the advice of others here to seek out a rheumatologist. Your GP clearly isn’t capable of dealing with the issue, and the longer you suffer the more damage is done to your joints. Get treatment now! I wish you the best.
    Helpful 4legsgood, Gullible Rated helpful

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    Quote Originally Posted by pippi222 View Post
    @4legsgood Please, please do NOT be embarrassed by your hands! It’s not your fault for the way they look. I see that your post was four weeks ago and really hope you have followed the advice of others here to seek out a rheumatologist. Your GP clearly isn’t capable of dealing with the issue, and the longer you suffer the more damage is done to your joints. Get treatment now! I wish you the best.
    I have had the disease for many years and so far no joint damage but it is because I've been on methotrexate shots and prednisone for bad flare ups. I am 1 of 5 siblings and 3 of us have it and my daughter has Lupus which is another auto immune disease. My mother had it so badly and every joint replaced because 50 years ago all they had is gold injections. I so agree with pippi. Please go see a rheumatologist. I wish you the best, too. It is such a savage disease.
    Helpful 4legsgood Rated helpful

  14. I have had RA since my early 30s, as our 27 years ago. One morning I woke up and could not move. It hit me like a ton of bricks. I started with methotrexate and went on to try everything available. After 15 years on Remicade it quit working. I then went to Humira, enebrel and Cimzia. I’m now on a different IV administered drug, nit a TNF blocker. It is not working very well. My hands are completely deformed and have been for quite sometime.

    I hope you have better luck than I have. It sounds like you are doing the right things. I’m going to try those gloves myself!

  15. this is a pretty old thread, @Musicmom, which means some members might not still be around to respond. however, i use arthritis gloves and find them very helpful. good luck!

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