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    Hill_Star
    Member Since: 07/05/07
    [Latest Posts]

     I'm 27 years old, with lap Band and have had RA for over a year now...Within the past 9 months everything has progress worst and they are telling me that it only gets worst as the years go by. Having them to tell me that is just heart breaking to me because I wake up soo so sore and soo swollen and stiff every morning. They have put me on Plauqanil ...Not sure if I've spelled that right or not. I've been taking it for two months and haven't notice any change at all. I've got huge swelled lumps on top of my hands..back of my neck..one of my ankles and one knee. If the swelling would go away it wouldn't be so bad I don't think. I'm just wondering...what type of medicine would they try next from plauqanil becaues I've heard of some awful side effects to some of the RA medicines. Some that even causes cancer.  Just wondering what all types they have out there because I'm not willing to take a chance on medicines that can and have been known to cause cancer. Thanks in advance everyone!
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    Tammy G.
    Member Since: 04/17/05
    [Latest Posts]

    Sounds like the Plaquenil isn't working. Sounds like you have a LOT of inflammation. Can you take NSAIDS? Celebrex was a miracle drug for me, but I had to stop taking it because of heart issues (caused by RA, unfortunately). I was diagnosed with RA about 15 years ago and been on just about every kind of RA drug. Right now, I am on Enbrel, a biologic, and yes, a side effect for a very small group of people on biologics is a form of cancer. Infection is more common and requires constant monitoring.

    If you aren't ready for a biologic, you might try Methotrexate. It is a chemo drug, but you take a very low dose once a week. I couldn't tolerate it, but lots of people do well with it.

    If you don't get your RA under control soon, you could suffer extensive joint damage, causing not only pain, but maybe requiring surgery.

    I will tell you that I mourned my life I expected to live after being diagnosed with RA. I tried to live the life I had planned out for me, but it didn't happen. After spending years in college, training for my dream career, I have to say that now I'm pretty much permanently disabled. In 15 years I can't say that my arthritis has ever gotten better or went into remission. Some days are worse than others, for sure, but no day is a perfect RA day. It is just the cards we drew, and we gotta play em. Good luck.
     HW 456  SW(6/16/11) 427  CW 340
    GW 180

       
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    Hill_Star
    Member Since: 07/05/07
    [Latest Posts]

    I'm so glad you replied..I've been doing nothing but worrying and the reason I worried so much and of course anybody would is because in my family..Cancer is in our genes bad. Thanks so much..its kinda givin me a little peace of mind that there is something out there that can help.
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    Tammy G.
    Member Since: 04/17/05
    [Latest Posts]

    You probably should try to avoid the biologics until something with less risk comes along if your family is predisposed to cancer. I would ask about the methotrexate. Arava is another you might try. There are also some foods that help with inflammation, like Tumeric. Have you had your sed rate tested lately? It should ideally be under 20. Also get your C Reactive Protein checked...if it is high it means your body is full of inflammation that could cause heart problems. See if you are able to take Celebrex--it will help with the stiffness. If you are able, water exercise in a warm pool is amazing. Again, good luck!
     HW 456  SW(6/16/11) 427  CW 340
    GW 180

       
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    scorp2413
    orchard park, NY
    Member Since: 06/03/08
    [Latest Posts]

    I too have RA. I was on Plaquenil for 3 years. I went off it 6 months ago because it wasn't helping anymore. I feel the same off of it as I did on now. Have they put you on prednisone too? I was taking both for a while to get it under control. I am not sure what your plans on for having children or not but take that into consideration before going onto some of the medications. My next drug of choice is Humiera. It is safe during pregnancy, as is Plaquenil. Good luck too you!

     

            
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    Hill_Star
    Member Since: 07/05/07
    [Latest Posts]

    To be honest I don't see anyone having children after living like this. Theres morning I wake up and can't move my hands...I just can't imagine having another child and not being able to take care of it like I need to. That to me would just be heart breaking although I had planned on having more. My Plaqunil isn't working like it should, but I do feel like its helping some what. I"m just so scared of the other meds that everyone says helps them so much. I'm willing to take chances but not when it comes to causing cancer.
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    Nicole W.
    Memphis, TN
    Member Since: 07/14/02
    [Latest Posts]

    My rheumie told me she wouldn't put me on Plaquenil unless I was pregnant and still having flares because it just doesn't work that great for most people unless their symptoms are pretty mild. I've been on prednisone for the last few weeks (officially diagnosed with RA last week) and will be starting the methotrexate this week. Kinda bummed cause hubby and I wanted to start trying for a baby at the beginning of the year but I guess it will have to wait...

    Also, from my research, there's no definite link between cancer and biologics since people with autoimmune issues are already at an increased risk of cancer because of the autoimmune crap. Too difficult to tell what actually caused it and the rate of cancer in people taking DMARDs and biologics wasn't particularly higher than those not on those drugs.
    LilySlim - (TbB6)
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    MissBettyBoop2
    Member Since: 11/26/11
    [Latest Posts]

    Hello,

    Lurker here, but I read your post and I had to register and reply.

    I've had RA for going on to 15 yrs now. RA is a serious auto immune diease that is progressive if not treated. It can effect many parts of your body, not just your joints. But your heart, your eyes, your nerves and blood vessels etc, etc.

    Yes, there are side effects to some of the drugs. But most people tolerate them well. I've been on plauquenil, methotrexate, predisone, Enbrel and now, Remicade.

    IMO, predisone is the worst of the lot.  However sometimes we need it to knock out a flare or the keep the RA under control.

    You really should give the methotrexate a chance. Most people do tolerate it just fine and it could put you in remission. If it isn't enough I would also talk to your rheumatologist about a biologic as well. The best course of treatment for RA is fast aggressive EARLY treatment!

    I understand the pain you are in. For the most part, I do GREAT! But right now I am in a major flare, because I had to stop my RA meds a month before and after my sleeve surgery. So my RA is kicking my butt big time right now. My hands hurt, my shoulder is KILLING me, as is both knees and my neck is stiff. So I understand...

    But please, don't mess around with RA. You could end up with deformed joints in a short amount of time. And what they say is true. Once your joints are gone, they're gone!!

    OH, when I went on Enbrel, the difference was amazing. I first noticed, I had more energy!!! I just started feeling better. Then I realized my hands didn't hurt like they used to. The difference was PROFOUND.

    So please, I hope you get help for your RA. It is nothing like Osteoarthritis....NOTHING. So I hope you see a rheumatologist for it and you get the meds you need.

    GOOD LUCK!
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    hazelnut6
    Member Since: 01/12/10
    [Latest Posts]

    Haven't posted on here for a while.

    I have RA and a RNY.

    I'm currently on Plaquenil and Humira injections.  My Rheumie is about to change my regimen though from the Plaquenil to Methotrexate because I'm having a lot of  breakthrough pain between injections of the Humira.  Only thing that might get in the way are nodules that I have in my lungs.  I have to have them scanned first to see if the Humira is shrinking them, if they are...they are definitely RA related and the Methotrexate will be good.  If they are unchanged, I may not be able to take the Methotrexate. 

    Go back to your Rheumatologist, there are many options.  Plaquenil is usually the first choice but other medications can be added along with it such as injections to help with the pain and stiffness.  Humira has been great for me and after getting past the first couple of injections, it's a breeze now giving them to myself.





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    50andready
    concord, mi
    Member Since: 07/24/00
    [Latest Posts]

    My rheumatologist is wonderful and I trust her alot.  She started me on the methotrexate with plaquenil right away.  When my SED rate was still high, she added Embral injections.  It works!!  I have not had any flares in 2 years.  My SED rate is normal, and my doctor says that means my RA is under control, and that means, there is NO more damage occurring!!!

    I still have the fatigue, and achiness, but I am so much better than I was before.  The side effects are scary, but so is the ruination of your body if you RA is left untreated.  I continue to get blood work taken every 6 weeks to check my liver, kidney, SED rate etc.  So far, I have been uneffected.  All the lititure out there agree that Plaquenil, Methothrexate, and Embrel (or another variation ie: Humira, Rhemicaid) is the best treatment for RA.  I wish you luck, and try to keep moving!
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    pqqkieturner
    MI
    Member Since: 02/11/12
    [Latest Posts]

    I have read all the posts, and thought I would let you know my story.. I was diagnosed with RA at 23 yrs. I fought it for about 5 yrs, then finally gave in. I REFUSE to take any steroids, because my mother had RA and took steroids and I watch them slowly kill her, her skin was so thin, if she cut herself, they couldn't put stitches in, because the skin just tore. And she died at age 54 from liver problems that they connected to her steroid usage over 30 yrs. Now me, I was, get that WAS, on Enbrel for 9 yrs. I will say during those years, i was down to taking just 1/2 a vicodine 500mg pill at bed time to help with restless leg. But after 9 yrs of usage, I developed pain, unbelievable pain in my tailbone area. AFter several tests, I was found to have a Chorndoma tumor on my tailbone area.. within 2 weeks they had me in surgery removing the S3,4,5 and tailbone area. I thank GOD everyday it was begine, but I now live with a 17 inch scar on my back side, and a hernia on the back side, that eventually one day I will end up with a colospocy (sp?) bag. All this is traced back to the 9yrs of Enbrel usage. NOW I am 45, and NEVER again allowed to use a TNF inhibitor. I have to use the BIG boys. The pain is unbelievable, I take 1000 mg vicodine, and lyrica for the nerve damage I now have after surgery. I am also taking methrotrexate by injection every Fri, because when you have the RNY gastric bypass, the body doesn't break it down fast enough, and it gets caught in the liver, and you get very sick.. I am also right now taking Rituxan. Which is a Chemotherapy. they give it for pain control now. But the side effect from this is a brain infection, so doctors have decided to take me off it, because I truly don't see it working. the pain is still overboard. So next since I can't take the Enbrel, and remicades. I have to take the newest thing-- IL6 inhibitor drugs. Aceterma.. it is suppose to be safer then the enbrel. The best I can tell you is PLEASE listen to your body, and your doctor. Please be careful. They always claim the drugs are safe, then after years of use, there is always something that comes up.. With the Enbrel, Bone cancer is a big thing. of course they won't advertise the problem with it, so please becareful.!!!! Well just my 2 cents..
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    ninacastillo
    CA
    Member Since: 02/11/12
    [Latest Posts]

    I feel for you and everyone else suffering with RA. I was diagnosed at 28. I had a healthy 2 yr old at the time and I was devasted. I was able to endure the pain and changing treatments for years. I have three more children. Pregnancy and hormones always made the pain disappear. I enjoyed many months during the past 20 years in remission. I am on Methotrexate and Prednisone and it works most of the time. I'm 8 wks post-op (RNY 1-11-12) and dropped almost 50 lbs. I can only hope that the symptoms will diminish with continued weight loss. I never wanted to become a burden to my children...but more importantly I don't want to be a BIG, FAT, IMPOSSIBLE to LIFT burden to my family as I get older. I try to accept the bad days with this simple thought..."so many people in this world have so much more pain and suffering to deal with than myself". God Bless you!
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    Hill_Star
    Member Since: 07/05/07
    [Latest Posts]

     I'm 27 and I think what hurt me most is having the drs say no way should u ever have anymore children. It's like driving a knife in my back. I have one child who is fixing to turn six and just can't imagine him growing up as an only child. My RA dr told me that RA can do funny things during pregnancy and I'm hoping that it will not affect how healthy my pregnancy will go once I am pregnant. U say that the meds u r on work sometimes :/ but for the most part it does work right? I'm on plaqunil and it works but it don't lol what I should say it doesn't do everything , but if I wasn't taking it it would be hopeless. Have u or anyone else found nything at home that works and relieves some of the inflammation and stiffness? Such as: I find heat really helps with the stiffness and that depends on how much bacon u eat... Can really make it worst. I ate about 6 pieces of bacon witha pie e of tomatoe and by that evening it was horrible! Since then I've not ate bacon and haven't had such a bad spell since that. Sometimes I wonder if that's just something I think caused it or just a bad day for me. Thanks so much for replying everyone. Nice to know that there's some young people that's going thru the same thing even though some are worst than other. God bless each and everyone of y'all and good luck on the weight loss journey!!
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