failing again...no rituxan anyomre..

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serah24
serah24 Member Posts: 34
edited 16. Feb 2012, 06:11 in Living with Arthritis archive
As you all know , friday was my first infusion of rituxan.everything went bad,after 30 min i had an itchy feeling all over my body so we stopped it and they gave me hydrocortisone then after feeling better we complete it then after 20 min i had a pain in my throat with the same itchy feeling and.it was really bad so i stopped the whole course! took cortisone again and came back home..nothing just nothing, i have a very bad feeling,really disappointed,don't know what to do next. i have an appointment with my Dr next week...don't know what to do...sorry for the negative feelings but i don't have anything to say...

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  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
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    Hello Serah
    I am so sorry for you love, my sister had the same problem as you but it worked for me. I bet you where hoping for the big feel better. I really dont know what to say to you, you must feel gutted. My sister has had another drug this year that worked for her ill try to find out what its called but wont see her till Wednesday. I hope you feel better soon.
    Colin
    Ps i forgot to give you a hug so hear you go big hug
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh dear, oh dear, oh dear. I am so sorry Serah, what a let-down for you. Immune-based arthritis is a furious, red-faced angry beast and as such it sometimes requires furious, red-faced and and angry beastful meds but these can come at some personal price, as you have discovered. I am ashamed to admit that I cannot remember if this is your first biologic/anti TNF or not, and I sincerely apologise :oops: . I have been there with meds that promised much and delivered the oppposite but have now found summat that, despite not doing what I would like, apparently does enough to qualify as a 'benefit'. :roll: This may feel like the end of the world (and so it should, for a while at least) but I hope there is something out there, that you have not tried as yet, that may prove to be somthing better for you. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • serah24
    serah24 Member Posts: 34
    edited 30. Nov -1, 00:00
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    Oh really she did so too :cry: well many thanks for you warm feelings Colin :) well, i will see what will happen in my next appointment with my rheumy..i think we'll discuss 2 options, enbrel which i still haven't tried it or getting back to humira because i didn't take it enough time to see if it's helping, and maybe we'll discuss some helping drug with one of them because i'm making the decision to stop gradually the cortisone since i'm getting worse day by day with my joints destruction and the cortisone is doing its job by helping with this destruction!! well, very depressing i guess but giving up is not an option,and thanks for caring to ask your sis about her new drug really:) maybe i'll ask my Dr about it when you find its name..and send her my best wishes..hugs
  • serah24
    serah24 Member Posts: 34
    edited 30. Nov -1, 00:00
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    Oh yes DD :roll: such a bad feeling i'm having right now but as i said i am not giving up,yet,and about the meds , as i said before i tried many ones including remicade which hadn't any effect on reducing the disease , then MTX alone( stopped it without reason , Dr choice) then i tried arava(severe allergy) and after i took Humira, but not enough to see its effects(because of some insurance issues which am hoping now to solve, and lately i took Actemra and Rituxan now,both with severe allergy, well it seems i'm the queen of allergies :lol: funny still sad..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    It is tough, Serah, there is no doubt about that. I tried infliximab and then enbrel, but the humira combined with injected meth has given the 'best' results so far, i.e. best from the bloods point of view but that won't be translated into how I feel as OA is now a major factor in my knees and ankles thanks to the PsA damage. C'est la vie, non? I know that my history of these treatments is not relevant to you but I am sure I began the meds far too late for them to make any difference.

    The odd thing is that these meds are supposed to quash the allergic response as they shut down the immune system but we are all so different in how we respond. I have not yet had an allergic response to them (apart from the enbrel, that tried to explode my liver but I felt OK) and I have enjoyed discovering that all the things I was denied as a child due to severe eczema are actually not that wonderful, but who knows? We are all so different which, I reckon, is one of the most frustrating aspects of this whole malarkey. One man's wonderful 'It's returned my life!' drug is another's poison. Grrrrrr. I am glad to read that you won't give up hope, that is to your credit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    So sorry to hear of your dissappointment with your treatment. No wonder you were gutted. Hopefully they'll be able to find a cocktail that you can take and which will help you.
    Sending big gentle hugs.
    Rita.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Sarah
    I am so sorry the treatment didnt work, I can only imagine how disappointed you feel, I really do feel for you, and I hope that whatever they offer next is a great success.
    You take care xx
    Love
    Barbara
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
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    you get your self all worked up and let your self belive it could be the one to set you free then it kicks you in the teeth so sorry this has happened hope next one works better val
    val
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
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    Sarah the new drug my sister is on is called ABACEPT
    all the best and good luck
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • serah24
    serah24 Member Posts: 34
    edited 30. Nov -1, 00:00
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    DD,delboy,rita,barbara and val thanks for you encouragement and support,each word makes a difference really :) and Colin yes i've heard about this drug it has another name i think it's Orencia, well it's another option to discuss with my rheumy.thanks for caring :) i think it will be an interesting conversation with my Dr since she was also putting lot of hope on rituxan,i don't know what will happen next..but i hope to get some of " the new hopeful feelings" after seeing her.
  • frogmorton
    frogmorton Member Posts: 29,447
    edited 30. Nov -1, 00:00
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    Dear Sereh

    I am so sorry, but that sounded like a really bad and scary reaction.

    Good news is that doesn't mean you will react the same to all of the meds.

    Will be thinking of you and hoping that more 'hope' will be offered to you when you see the rheumy. Nice to know she cares enough to be disappointed too.

    Love

    Toni xxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
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    Hello Serah

    Just wanted to say how very sorry I am about the problems with the Ritux infusion.

    I see from one of your posts that you used to take mtx but it was stopped by the doc without you knowing why. I can't take mtx but just wanted to say that my rheumatologist told me that, if I had been able to take mtx alongside the biologics, I may well not have become allergic to Infliximab and Humira and he said that, even a low dose of mtx could be enough to help reduce the risk of that happening. I'm guessing that he meant in the longer term, rather than prevention of a sudden infusion reaction like yours but if you were able to go back to Humira for example, it might be worth discussing the mtx again with your doc.

    Really good luck when you see your doc this week - and please do keep us posted.

    Tillyxxx
  • serah24
    serah24 Member Posts: 34
    edited 30. Nov -1, 00:00
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    Thanks Toni and Tilly for passing by...well yes Toni my Dr is such a kind person and i really trust her and feel comfortable talking to her about everything, and Tilly you've mentioned an important thing which i haven't realized before,maybe because my previous doctor stopped it when i was too young to have a clear idea about any of the drugs,well now i'm considering taking it again,at least to take anything in order to stop prednisone, and we'll see what is our next choice of biologics...today i called her and we agreed to meet on Wednesday to discuss everything...
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
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    It's great that you can discuss these things with your Dr. Best of luck with it all. Do let us know how you do. :)
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