First Actemra

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First Actemra injection for psoriatic arthritis this morning. Another guess, another trial and no doubt another abject failure!

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16 Replies

  • Posted

    You need to think positive Tony, you never know this could be the one for you
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  • Posted

    Oh Tony,

    I understand your frustration ...

    but if you do not try a medication with an open mind you may talk yourself out of a good experience.

    From 1962 to 1999 I searched, I tried so many drugs...those years of trying, of holding on that so very many of us did pay dividends today for all of us.

    I truly know how you feel...I have lived the profound disappointment of yet another failure,...and today my body is quite quiet because I held on to hope.

    You have friends here...when you need to lean, just lean on us.

    hugs

    judith

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  • Posted

    Let us know how it goes!

    it works completely differently than anti tnf , targeting a different bit of cells so may prove to workforce you where others haven't. Did you have it as an infusion?

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  • Posted

    Don't know why typo workforce happened! 

    Should say WORK FOR YOu- excuse the loud capitals!

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  • Posted

    being positive won't make the meds work, they either work or they don't. The problem lies in getting the diagnosis right so the correct meds can be prescribed. There is very little known about this disease which means getting both right is simply a guessing game. Unfortunately the damage this disease has caused in the 12 months I've had it is now probably too much to repair or too much to allow me to live a normal life.,

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    • Posted

      Not so Tony.

      there aren t correct meds for a correct diagnosis as everyone reacts differently to the meds. ( eg same initial treatment whether it's RA or psoriatic arthritis)

      Actually there is a logical progression in what is tried next at each point and the only way to find out what will work for an individual is trial and error. Hence the frustration- ...it s not the system at fault but the difficulties of treating an individual s auto immune disease.

       

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  • Posted

    Not quite true actually, there are many arthritis types under the rather broad umbrella of RA, some medications are used for specific types, after for example is a drug used generally for RA; however, it is more specifically used for PA and that is why a correct diagnosis is required.
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  • Posted

    That should be after not after, so tiring this auto correction, should be called auto stuff it up!
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  • Posted

    Well, almost one week into my first injection of actemra and I'm covered in bruises, scratches and welts from the scratching, looks like I'll never know if actemra would have helped.   So far I think I would have had an alergic skin reaction to at least 50% of all medications I've tried, both for RA and other none related problems.   I've just reduced my prednisone from 10mgs to 9.75mgs so tomorow and for the next few months I'll be feeling much pain.   The accepted tapering, by those actually on prednisone, is usually around 10% but I've found even reducing by 2.5% causes a lot of pain; still, I'll be trying to reduce as quick as I can and then hopefully my skin will recover.    

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    • Posted

      The first time I had actemra I had a hacking cough that lasted for a month but that didn't happen after the second one.but my inflammation levels had dropped to normal. What does your rheumy say? Can't the itching be controlled with anti histamine? I am now on another infusion rituximab ( which was recommended as I also have lung fibrosis) it is automatically given with pred and piriton infused as well to prevent skin reaction. It might be worth asking about controlling the skin reaction first before giving up on it.

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    • Posted

      Hi Tony

      I had a nightmare stopping prednisone....took me 2 years!

      ,Do not give up...if you have to stick on a dose stick for a while and then reduce again. I purchased a pill splitter and became so proficient with it that I could split a wee prednisone into four pieces.

      Hugs

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  • Posted

    Funny thing about tapering prednisone, Drs sem to think it is easy and seem surprised when you experience difficulties,   I also split my 1mg tabs into four but I use a razor, never had any luck with a pill splitter.   My Rheumatologist is also an alergist so I might ask for some tests, I seem to get rashes and itchy skin all the time now.   Second actemra due tomorrow, I'll continue with it until next I see the Rheumatologist.

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