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Humira

Posted , 9 users are following.

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I have brought this situation up before but it's been a while so I would like to know if you have taken Humira and if it worked for you or you had to go to something else. I've been on Humira since March. I was making progress until about 4 wks ago and all the sudden I was extremely fatigued. All day from morning til night. It was almost time for my shot so I figured that is what it was but after I took my shot all hell broke loose. Pain in both shoulders, elbows, wrists and hands. Just like I never started it. I took 50 mg pred, pain pills and celebrex but it did no good. Now it's a few days after the next shot and I am back to the fatigue. Went to the doc yesterday and he acts like he doesn't know what is causing the fatigue or why I started flaring again. Everyone acts like Humira should have done me wonders. I go back in 6 wks and if it doesn't improve he said he may swith me to embrel and add medicines to it. He doesn't know what meds to put with Humira. I just want to hear how everyone else reacted to Humira. BTW, he gave me a b12 shot and today I feel more energetic. smile

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28 Replies

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  • enrica03715
    enrica03715 Guest

    Posted

    Hi River,

    Sorry to hear Humera is not working, perhaps trying another type may help as I was told there are others if it doesn't work for me. I have just had my second injection hasn't started working yet but I expected that it would take a while. I am always very tired and am constantly told that is the nature of the illness.

  • SSROB
    SSROB Guest

    Posted

    I've been a suffer for years and this last year and a half have been really hard for me to control my comfort the usual things do not work every effectly anymore. The doctor always throws in the Vitamin "D" thing (I think they do that when they do not know what else to do ... ) but what really makes me mad is the "New" HUMIRA  commercial on TV where the women is running around stepping over kids,dogs playing (so active) I think it gives people (especially Bosses) the idea the Arthritis is no BIG deal and easily managed which is the furthest from the truth  ! I just wish they would keep it more real so the diesese doesn't become commonly ignored.  smile
    • optimistic100
      optimistic100 SSROB

      Posted

      I totally agree. Everyone says...... I have arthritis too, blha bla, bla. There is no understanding that RA is a totally different arthritis and will be fatal if not addressed.  I am so annoyed at the fact that the commercials focus on  more simple arthritis that is localized. The other thing that makes me furious is that the medical world calls these wretched treatments, meds. It is CHEMO THERAPY.  It is about time that some honesty is put into the rhetoric. It is dangerous, scarey chemo. Maybe if the public heard this, they would not be so ignorant. Somreone needs to make a tv special about this disease  so we can get real feedback. I am so angry about people saying that accupncture or physical therapy helps. IT DOES NOT.

      If anything it is hurtful when your friends try to make you feel better by  trying tomake you think itis not a serious  disease.. .

    • ama38049
      ama38049 optimistic100

      Posted

      This is how I explain to people now how arthritis is treated - steroids, then chemo and then biological. And maybe a combination of some if one does not work. Or just living with pain if nothing works...

      My work is ignorant - they said that I look sooooo healthy, so surely I am not sick. My HR said that RA is nothing when I told her that I have it along with some other horrors in my life... She keeps bugging me about an organic food that I cook or that I should be more sport active... My manager "kindly" mentioned that being vegan didn't help Steve Jobs (not vegan, btw, just picky about my food)...

      They never saw me unable to get off bed, or breaking my phone because the fingers didn't hold it, or crying from pain. They never saw me falling asleep exhausted in a midday or unable to sleep from pain at midnight. They also never saw me taking a painkiller before I do whatever sport I can do at that moment or hiking with my children. They certainly do know that I hit the fitting room every day this week (I pray that Enbrel will actually keep working...AMEN...)

      No longer willing to speak about myself, I do start to talk about arthritis in general terms. Prince had one, so when someone speaks about him taking drugs, I talk about his struggle with pain... About types of arthritis. About ignorance. Maybe it will make them think before they speak up the next time. I hope it will...

    • SSROB
      SSROB optimistic100

      Posted

      Yes I hear you it sounds like we're kind of at the same point ... I just want the truth I know what I have " listen and to me " stop treating me like a pin cushioning  . Your so right about a TV special on R.A  and osteoarthritis so many people have become numb to this .. No one understands ... And the new laws here in NY make it tougher and tougher to get the things we need .
  • Rowbirdie
    Rowbirdie Guest

    Posted

    Hi River

    i m with Cindy on this. She has found benefit from remicade. I have found Rituximab a life changer( also an infusion- just like she described, but given every 6 months , or less often than that if you re lucky.) 

    my my observation on these forums is that when you re desperate with the pain you ll carry on and try any med the rheumy suggests until it doesn't work or causes bad reactions, then you try something no else. It is a horrible situation- but I don't think rheumies are using us as Guinea pigs- it s just that it s only by experimenting they can find what works for each individual. Sadly- as someone mentioned, there an come a point for some people that nothing really works.

    Now I m a lot better I m looking into diet- I did try this at the beginning with no immediate effect- but my symptoms were too severe to give the time to seeing if that would work.

    hang on in there- these new biologics have transformed the outlook for RA. If Humira doesn't work for you, move onto the next one. Don't forget that many people for whom biologics work do not contribute to these forums.

    all the best

  • cata
    cata Guest

    Posted

    OK, this discussion is a mess what do not help anyone.

    First RA IS NOT FATAL, it can decreases your life expectancy (you don't live as longer)  mostly because of all the medication we take, which obviously have side effects including more susceptibility to infections 

    2nd - VIT D  IS CRUCIAL TO RA because we tend to have lack of it due to the inflammatory process - not only that but we have bone destruction as you all know and vit D is crucial for bone formation together with calcium. Ask any old person  with osteoporosis and they will tell you that they take calcium and vitamin D.

    3rd = River let me see if I understood you have now pain and fatigue?  For  a start fatigue can be  a symptom of RA so if your disease is not controlled it makes sense that you have fatigue. But if Humira is no longer working you should tell your doctor . However sometimes what happens is that although  the anti-TNF (Humira) is working the immune system has several "arms" that do the similar jobs, and what is happening is that it is now another  "arm" that has taken over and is  promoting the inflammation. That's what happened to me. 

    4rd - PLease don't attack doctors without trying to inform yourselves a little. Ask your doctor why he/she is doing something. And take vitamin D and calcium (or drink lots of milk, eat yogurt or anything dairy)

    I hope you all feel better soon

     

    • optimistic100
      optimistic100 cata

      Posted

      All dairy increases inflamation. I would avoid all dairy to reduce inflamation.  

    • cata
      cata optimistic100

      Posted

      Dear optimistic I seem to keep answering to your comments wink  - dairy has been seen to be both pro- or anti-inflammation depending on the individual (somewhere here tehre is acomment by me bing moderated by the site where I posted a scientific review that collects data from many studies to conclude that)

      So don't exclude dairy from your diet until you know if you have a adverse reaction when you take it

       

  • ama38049
    ama38049 Guest

    Posted

    River, another supplement to consider when taking humira is magnesium. Humira has an annoying side effect on muscles - anything from weakening these to destroying these. I started taking Magnesium few months after Humira and it helped a lot. vitamin C also helps to improve immine system weakened by Humira. Good luck. I really do hope that it will work for you, but if not there are other alternatives. Best of luck, once again
  • cata
    cata Guest

    Posted

    Dear optimistic - different people respond differently to dairy, actually some studies show that dairy can be anti-inflammatory. 

    See for example this review http://www.tandfonline.com/doi/full/10.1080/10408398.2014.967385

    where a a study reviewing a large number of clinical ttrials shows that daity efefcts depend on the individual, etc .

    It's crucial as a patient to maintain yourself informed but more than anything else to not make statements  to others or believe in things without knowing the evidence. 

  • Guest
    Guest

    Posted

    I was trying to reply to a couple of comments but the site is not working good. Thank you Cata & Ama for the info. I've just added vit C and will look for some magnesium. Great info! smile
    • Guest
      Guest

      Posted

      I have been taking D3, magnesium, and vitamin C. Also some multi vitamins. I have increased energy now and one heck of an appetite! Worked pretty fast! Thank you for all your comments and information smile
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