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    Old 09-15-2015, 05:50 PM   #1
    J123
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    Just started Xeljanz

    Hi All,
    I've been through all the meds there are and had great success with actual injections for 1 1/2 years until it gave me high blood pressure and diabetes. It was a huge disappointment to have to stop it. My Dr. Just started me on Xeljanz and I was wondering if anyone has had any success on Xeljanz.
    Thank you.
    Joanie

     
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    Old 09-18-2015, 06:33 PM   #2
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    Re: Just started Xeljanz

    I am sorry you developed Diabeties, very sad when we go on harsh drugs to treat one condition, ending up with more health issues.
    Few years ago I was laying under Orencia IV infusion and start talking to a young man next to me. He told me how well he was doing on his biologics but then he developed Lymphoma from it...So for 2 years he was treating cancer and now came back for Orencia treatments. His Dr.felt that this is a smart decision.
    RA is a bad condition which needs to be under control. Can you imagine this story?

    I was on Xeljanz for 2 weeks; can't tell you if it helped my RA because after 2 weeks had to stop it. Stomach issues were really bad. But I heard this drug is helpful if one has no gastro problems.

    All the best to you!

     
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    Old 09-19-2015, 04:30 AM   #3
    J123
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    Re: Just started Xeljanz

    Thanks so much for your response. Typo in my original post...should be acthar injections. It's been 1 week and thankfully my stomach issues have resolved. I haven't felt any change in my RA symptoms yet.

    Side effects are very scary. They all say cancer, but what choice do we have. It's a quality of life decision isn't it.

    I hope you find something that works for you.
    Joanie

     
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    Old 09-19-2015, 06:54 AM   #4
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    Re: Just started Xeljanz

    All of these meds for some reason are dangerous. I personally met few people who got Lymphoma after being on biologics.
    I met them after their fight with cancer while we all been having IV infusions for RA...I would think they will never go back on RA biologics, but they are right back on it...

    I been on med for RA for many years, but only once went in remission for 8 month while on Orencia infusion. Rather then that I still take self-shots but in constant flair and in between flairs, I fight infections b/c of low immune system.

    I wish all people listen their intuition, their heart; I regret I didn't.
    3 years ago my RA to try everything possible to help me, decides to put me on Ritaxan infusion. She said despite the worst side effects out of all of them, she never saw anyone had it. I agreed, but for 2 weeks before treatment I couldn't sleep, eat and worried more then I ever did about any treatment.
    They prepared me for an hour with steroid drip just in case and then introduced Retaxan...I was reading for another hr when felt strong itch in my ear, well who cares about that, right?
    Next thing i know, i can see how my legs, arms becomes purple and huge blisters growing all over my body.
    They covered me with curtans from other patients and start saving my life...very fast my throat closed up and i finally learned what App shock is.
    If i only express my feelings to my Dr, if i listened to my intuition and refused this drug, i wouldn't need to go thru such scary experience and struggle for a year from it's side effects.

    Hugs,
    Moldova

     
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    Old 09-19-2015, 09:16 AM   #5
    J123
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    Re: Just started Xeljanz

    What a horrible experience you had! I've been refusing infusions for years. If Xeljanz doesn't work for me I think I'm out of options, except for steroids of course. Acthar was the best thing that happened for me, unfortunately, after 1 1/2 years it got me very sick.
    What else have you tried?
    Huggs
    Joanie

     
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    Old 09-19-2015, 10:24 AM   #6
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    Re: Just started Xeljanz

    Literally, you name it - i had it!
    I have very high tolerance to meds because due to my diff conditions since childhood, i had tons of treatments. Very hard to put me in remission or make the drug work on me.
    We started with MTX, i didn't see any benefits from it, but boy was I sick, lost hair too. This drug used for cancer patients too, it's a chemo treatment in a higher doses.
    In 4 month I was on biologics; every group -every drug.
    Finally I was told that nothing really works, have to wait if anything new gets on a market. A month later my Dr called saying she feels uncomfortable to keep me without treatment and that self-injected Orencia came up on a market.
    I am on it for 3 years now. Have no idea if I feel the same or worse without it. But my Dr (and second opinion as well) said I will not last long without the treatment.
    I have very advanced case, with RA lung, heart muscle as well, not to mention every joint, etc.
    So I guess I have to pray all be ok and Orencia works. 😀

    How are you doing in a winter, autumn, spring? For me - it's a very long, very painful, one big flair time. Unfortunately, summer is very short, but heat works better on physical and emotional well being....
    Don't give up, dear heart and don't let your Dr give up on you.
    Go on reputable sites, do a lot of research, talk to people to get more education.
    Get your good relationships going with people who love and care about you. I hate to complain and try to smile even when i want to scream, but one good Dr gave me a good advice: don't be a hero, talk to people how you feel, get support as much as you can, ask for help; otherwise you get into deep depression due to pain, complications, etc. And if you think you bad now - it will be much worse to pull you out of there. So keep yourself as happy as you can!

     
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    Old 09-19-2015, 12:32 PM   #7
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    Re: Just started Xeljanz

    I too have been on everthing, except infusions. Failed all the biologics. Been on and off medrylprednisolone, mostly on for 6 yrs. I do love my rheumatologist, he never lets me stay in pain, but the pain meds so have their side effects too, don't they. I'm very lucky, my husband is completely supportive and loving. Takes great care of me. I've read so many stories of people with either no support or negative attitudes.
    Nice to be able to talk to you.
    Huggs
    Joanie

     
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    Old 09-19-2015, 01:51 PM   #8
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    Re: Just started Xeljanz

    Thank you Joanie, same here!
    Pleasure all mine...
    I forgot to mention about steroids. Each time I get really bad flair, I go on steroids for 10 days. My Dr checks my bone density; i got Osteopenia so she is very strict about Rx steroids now. I met a wonderful lady on this board years ago, last summer we met in person. When I saw what steroids done to this wheel chaired lady, I realized how great that my Dr is careful about them. This poor lady has all her bones cramble, severe osteoporosis. She wishes to have a better Dr years ago...
    Despite side effects, steroids help effectively and fast.

    I am on pain meds since 2003 after car accident, after failed spinal fusions which left me disabled. RA and Lupus diagnoses came almost the same time.
    I have a theory about pain meds: if you can function without them, if you don't loose your sleep night after night, if you capable go shopping, go for dinner, cook, meet friends, etc. - stay away from it. My honest, heartfelt advice to you, sweet heart. Opioids should be only for those whose life quality none existent, who can't do all the things i named above...
    Whose pain 24/7, severe pain, no less then 7-10 all day, every day, whose spinal nerves damaged, like in my case, and feet/legs in so much pain and NOTHING works...
    I communicate with people all over the world who left disabled after serious spinal surgeries, Arachnoidits , as one of complications and all of them wish they wouldn't have to take their pain med. None of us take it by choice..
    Another thing, if one think to go or not on pain med, it means person has a choice.
    I don't wish you ever to get to the point when you have NO choice...
    Enjoy your loved once and get strenght from it! To me this means more then anything. 😀

     
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    Old 09-19-2015, 03:53 PM   #9
    J123
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    Re: Just started Xeljanz

    I would say I have a pretty good tolerance for pain. I do not take pain medication unless my pain is up there. I've had horrible flairs where I couldn't walk without a cane and have been in bed for days at times. I used to feel defeated when I needed them, but my Dr. feels I'm very sensible about it so I'm not too worried anymore. I feel for you, my husband had a fusion and I know it's life changing, just like ra. I had Lyme disease which kicked off my ra in 2009.
    How long have you had it? I see a nutritionist who has really educated me as far as what foods cause inflammation. I had to give up sugar...that took some time.

     
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