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After three of actemra inflamation levels have come down: CRP from 110 to 1.8 and ESR down to 8. Unfortunately, pain levels have not improved at all. Doc says it is due to the damage RA has caused to the joints. 12 months it took to destroy my joints and the pain will probably never improve - lovely!

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  • Posted

    I don't believe that!  Many of us have had RA for awhile, some for 30 years and we have been able to manage our pain.  Not all of it but enough to function day to day.  Many people have even gone into remission.  Don't give us!  Give Actemra a chance and if that doesn't work, ask to try something else.

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  • Posted

    Like Cindy says pester the RA clinic try something new
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  • Posted

    I guess it would depend on how aggressive your RA is. I can't use my arms/hands at all now and my elbows are almost as big as footballs. I've been on Mtx, sulfasalazine, hydroxychloroquine, leflunomide and a host of other meds including biologics and nothing has worked to ease the pain or progression of the disease, only actemra has lowered inflamation levels..

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  • Posted

    I was 11 in 1962 when I developed relentless, severe juvenile rheumatoid 54 years, I have been through hell with this damnable disease...I have an artificial hip, knee, ankle, foor on the right, both hands have been replaced and then revised multiple times, add two elbows, two shoulders, one DRUJ, and both hands again....I have blown my stomach out, suppressed my bone marrow, had 9 blood transfusions, shingles 5 times, cataracts, a vitreous humor detaching, drag an oxygen line around because JRA is in my lungs, drive a power wheelchair...have infusions through a Bard power port, suffered osteonecrosis of the ankle and lower jaw, and that is just the beginning...

    Your fight the RA and never give up, or you throw in the towel....

    Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

    By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

    Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

    Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many steroids. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

    DMARDs & Biologics... disease modifying anti rheumatic drug...

    This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

    Rituximab is delivered by infusion as are some of the others.

    Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

    54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.

    I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged and destroyed my body.

    Either you fight (we will all stand behind you) or you give up.

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    • Posted

      Well said !! compared to you I'm fairly new (15 yrs)

      And like you its a continual trial and error I have just had a

      really traumatic flare up which I don't known if it was caused

      By an adverse reactions to rituximab. As after last year I had it

      in october I had an alergic reaction to it when it was

      administered but they slowed it down loaded me with piriton

      then continued with the infusion

      For about 5 weeks afterwards I became unable to walk and

      Ended up off work my knee joints became so bad I was

      Unable to function most daily living tasks.

      Another flare up began August this year in September I was

      given 2 infusions 2 weeks apart.Same thing I had an allergic

      reaction more so than last year but again, they loaded me up

      with piriton and pushed the treatment through after the

      After the 1st infusion my knees became worse to the point

      where my crutches needed,

      2 weeks later I had the 2nd infusion after 2 days later. I was

      completely incapacitated I needed help to get out of bed , I had 3 steroid injections and was off work for 10 weeks

      Needless to say work were not amused

      I have asked the Rhumatologyist if it was the cause but they

      would not say yes or no and because and because I had so

      much steroid when i went to the RA clinic In october I was at my best.

      I see them again in April my question is has anyone had this

      Type of reaction to Rituximab as I am quire weary of having it

      like alot of you I have had Sulphasalazine, enebrel

      .orencia. to name but a few but I want to arm myself with more

      Information before I go back in April ( unless it's rescheduled)

      Any advice please

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    • Posted

      the night before infusion I swallow

      25 mg benadryl

      500 mg acetaminophen

      and allegra

      the morning of, I swallow a second dose of them all.

      when I arrive at the infusion center they administer 30 minutes of saline.

      Then they run in 100 mg of solumedrol...all of this is to prevent adverse reaction.

      hope it helps...big warm hug

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  • Posted

    I can't even imagine what you have gone through!  You are an inspiration to all of us!

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  • Posted

    Saw my GP this morning for a rather large lump on the upper side of my elbow that has been growing steadily for the last 3-4 days, he seemed rather alarmed and no idea what it is so sent me off for more pictures.   Movement is down to around 20%, can't even brush my teeth, it never stops with this diease.   And I've probably got around half a dozen ops to look forward to and of course the never ending rehab afterwards.   Wasn't kidding when I said it never stops!   

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  • Posted

    may be need a rheumy to withdraw fluid to have laboratory tested...

    can you see an orthopedic?

    Tony, you have had so very much...I am sorry...gentle hugs

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  • Posted

    When I have an infusion, every 2 months, of Remacade, they give me benydril in my arm.  It takes about 30 minutes and then they administer the Remacade.  I sleep pretty much for the whole 3 hours with no adverse reaction.
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