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  1. #1
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    Default So very confused

    DS2 (has Juvenile Arthritis) had his rhematologist appt on June 1st. She said the meds he is on are not working and we need to go more agressive (and move up to a higher dose medication).

    They are only one shot every two weeks, and will give his stomach a break, as he is still getting bleeds (white blood count is still WAY to low for her liking).

    BUT the side effects for this "new" med (not new to the medical world, just us) anyways they are SCARY!! She did have to warn us (and is giving us 6 weeks to decide) that it "may" cause lymphoma (sp?).

    But with DS2 having JA, which is an auto immune disorder and he is already on immune suppressent (sp?) drugs, children and people with arthritis have a higher chance of developing cancer anyways (mainly lymphoma), because the drugs suppress the immune system, so their bodies don't realize there are cancer cells, so the body doesn't fight it. This is why DS2 has bloodwork every 2 weeks (to make sure his counts aren't way out of wack).

    Before DS2 can even start this Humira, he has to have many tests and CTs to make sure he doesn't have any infections and why his white cells are so low (thats why we have 6 weeks), and IF I start him on the injections, then he will continue the bi weekly blood tests and have an ultrasound of is lymph nodes every 6 months. Also I have to watch for any infections, even colds. If he gets a temp over 99, I am to go to emerg.

    If I don't put him on this drug, he will need a knee replacement within the year . Also she isn't too happy with his index finger joints (in both hands) they are really bad, and making the other joints in the hands be deformed .

    Doc did not say it was either or, and is not forcing me to put him on this drug at all. She is leaving it up to me. I am doing all research before I sit down with my son, I feel he is old enough to help decide (he is 15).

    I'm just afraid to put him on this drug, then he gets cancer and hates me for giving him the drug (I would be injecting it bi weekly). But I'm afraid if I don't try this drug with him, then he will have to have 3 joints replaced in the next few years and something might go wrong with that, and he will never be able to walk or use his hands again.

    I am so frustrated with Arthritis and having to make these hard decisions.

    The drugs is expensive and our insurance will only cover 75%, but it isn't about the money at all (it will get paid either way), it is about his quality of life. He is already depressed because he can't do what other kids his age can do. He made the football team last fall, but wasn't allowed to play after failing the physical, he was really bummed. He had a girlfriend dump him because he wasn't allowed to be on the football team, which broke his heart (the little biotch lol, joking). I don't want my son to end up in a wheel chair or using a cane by the time he is in his 20's. Or even end up severely depressed that he feels his life isn't worth living (he does see a therapist and has a social worker through the arthritis society). It was hard enough seeing him get an injection into his swollen knee and have fluid taken off the same knee.

    Sorry this is long, but I am so tired and frustrated right now.
    Last edited by hockeymomof3; 06-06-2012 at 10:06 PM.

  2. #2
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    I have no advice to give you. But I just wanted to send you some very good thoughts and good vibes and lots of hugs.

    What a tough spot to be in. I know you will make the best choice for him though. xoxoxo
    XO
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  3. #3
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    Thank you

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    I'm so sorry you've got this tough decision to make. I think it's awesome that you're going to sit down with him and talk about the choices. What about trying the Humira for a set amount of time to see if he notices any difference. All drugs don't work for all people - I had a friend with RA who was on it and it didn't do anything much for her, though for others it does wonders. I would talk to the doctor (if she didn't answer this question already) about what is a reasonable time frame to start noticing some improvement and give it that time frame and then a bit longer and see how he feels. If he has a huge improvement then it might be worth it to continue on. Just because you decide to do it now doesn't mean it has to be a forever thing...if it's not working you change the treatment plan. I think that is what I would do if it were me and my son.

    Hugs to you - I can only imagine how difficult it is to see him suffer and then to have to try to make these kinds of decisions.



  5. #5
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    Quote Originally Posted by ZooMama View Post
    I'm so sorry you've got this tough decision to make. I think it's awesome that you're going to sit down with him and talk about the choices. What about trying the Humira for a set amount of time to see if he notices any difference. All drugs don't work for all people - I had a friend with RA who was on it and it didn't do anything much for her, though for others it does wonders. I would talk to the doctor (if she didn't answer this question already) about what is a reasonable time frame to start noticing some improvement and give it that time frame and then a bit longer and see how he feels. If he has a huge improvement then it might be worth it to continue on. Just because you decide to do it now doesn't mean it has to be a forever thing...if it's not working you change the treatment plan. I think that is what I would do if it were me and my son.

    Hugs to you - I can only imagine how difficult it is to see him suffer and then to have to try to make these kinds of decisions.
    Yes we have discussed this. Doc said it starts with the first injection, because if goes right into the muscle. It won't be like a pill, where the stomach breaks it down, and the body tries to absorb it before excreeting it

    We are going to try a 3 month trial. Each injection (comes in a twin pack) is $838!! So my portion is $209 per injection! (which is $418 per twin pack) We can only buy 3 months minimum at a time. So I'm hoping one of our applications comes through for help on this extra cost (that insurance doesn't cover). Cause $1254 right now just isn't happening lol

    I'm hoping his wish trip will cheer him up and bring him out of is funk!
    Last edited by hockeymomof3; 06-06-2012 at 10:41 PM.

  6. #6
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    I have no advice. But I do sometimes we have to take the chances with side effects with meds when it comes down to quality of life.

  7. #7
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    I'm so sorry you guys all have to go through this I am learning more and more about JA every day since I told you my friends sons has been diagnosed.
    I can't imagine having to go through that or make those decisions.
    ~Who ever said "don't cry over spilt milk" has never been a breast feeding mother with latch issues standing over a puddle



  8. #8
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    Hugs!! What a tough position to be in!!








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  9. #9
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    A three month trieal does sound like a reasonable thing to do. Is DS aware of this yet? I hope he knows how much you are struggling with this, and that he knows how very much you want him to feel better. The more you talk about it with him, the less likely he is to 'blame' you for anything. I can't imagine the struggle you are going through thinking about the injections. I hope it works for him. Hugs.

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    Is this methotrexate? We have some experience with this as it was part of his chemo protocol for 3 years. The oral methotrexate was given i week a month followed by dexamethasone which helps the immunities from bottoming out. He also received it through a lumbar puncture (spinal tap) in his spinal fluid once every 3 months. I won't go into detail on the issues with that as that is not what your DS is facing.

    What we found helpful when faced with the question of whether we should put him on a clinical trial was to get the opinion of another hemotologist/oncologist. Can you pose the question to another doctor in the field to get a second opinion as to the benefits vs risks?
    Last edited by nananana; 06-07-2012 at 11:36 AM.

  11. #11
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    No not methotrexate. But in the same family.

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