I was wondering why there seem to be so many of these kids with JRA ( and very young ones at that ) getting put on such harsh drugs so early?? I was diagnosed with JRA at 14 months old and I am now 38---granted those meds weren't available when I was young but even now when I have taken them---I was VERY leary.
I know most rheumys want to treat this disease aggressively but I sometimes wonder if they are telling the parents of ALL the side effects of these harsh meds.
Myself--I only went on metho after I had my kids because of the risk of becoming sterile. That is such a terrible thing to happen to a child before they become adults. I guess I just wonder why these kids aren't being started on some of the older and safer drugs---and if they don't work, then contemplating the other ones. I don't know---it just seems scary to me.
My 11 son has JRA also---granted we have been lucky and he doesn't seem to have it as bad as I do---but we decided to do cortisone injections and things like celebrex, motrin, aleve etc etc etc.
I do know there are children that have JRA much worse but I just get scared for them. I have had such AWFUL side effects from all these biologic meds as an adult and some of them are forever lasting. I developed a heart arrhythmia from enbrel that I am stuck with the rest of my life now.
I guess I am just wondering from you parents that have kids with this---are your docs telling you just how harsh these meds can be???? The cancer risks, the sterility risks etc etc etc.
I would love your feedback on how you made these decisions. It could be something I have to do in the future with my son---I just don't think I can put him on such poisonous meds though. Unless he was so stricken and in a wheelchair.
The first reason we chose AP for our daughter is because of how well she responded to antibiotics when she was treated for what they thought was an infection.
The second reason is everything you have said.
I would not consider them poison if she needed them for quality of life. I think most parents make the difficult choice pretty readily, when their child can't function. We would have. We were clueless in the beginning, and would have done whatever they said because our daughter cried when we touched her.
But they didn't start with mtx or a biologic. They started with Zithromax, and she did great. They stopped it when no infection was proven, had me thinking I was crazy for about a year until I found www.roadback.org, and we got her back on it.
There may come a time when she needs a biologic (mtx didn't work) and we will 'never say never'. We are just happy she feels so good now, even though from her ped rheum's standpoint she has had no treatment in over two years. That should seem pretty amazing, given her dx of severe poly JRA.
You ask if the drs. tell you about side effects. My experience is that they are pretty glossed over, but again, if your child is suffering and needs the med, maybe there is no point in adding to your anguish.
But disregarding side effects is another reason we hope to avoid Enbrel, etc.! When my daughter was on mtx, she had pneumonia, then staph. Did not register with the ped rheum! We were freaking out, and his office was saying she needed to keep getting her shots!!! Our ped said that all specialists live in a very small world removed from reality (he really said that!), they see a small slice of patients, and they are much more comfortable with the meds they use than most drs. would be. He said that when something bad happens not specifically related to their specialty, it does not register. If my daughter had a joint issue, they would get it.
And that is what I have tried to convey - when she goes on the big guns, nobdy is there is to look out for her.
Thanks so much for you feedback Suzanne!Becky has been on NSAIDs for 7 years but they are now ineffective. She had an awful winter, viruses, flares etc and her quality of life went downhill rapidly, hence our decision to allow 70 joint injections and the MTX to commence I do not want to see her in a wheelchair and she was heading that way rapidly. I have researched lots of the other paths but I think the benefits of corticosteroids and MTX is worth the risk of side effects. However, if she has awful side effects I will have to rethink. I agree the docs gloss over the side effects - one nurse even told me that most children she has seen have had none. Do I look daft? It's a toxic drug, of course there are going to be some adverse effects but MTX seems to affect different people in so many different ways. it's a case of wait and see and monitor very closely. VERY hard decision to make when you are making it for your child and my research led me to this forum - and I think you are all great!
Dee
Dee - We were told the same thing, very sincerely by a nurse - "Oh no, the patients we see don't have side effects." They have them! You just don't listen when they report them! That is how you sleep at night....so true!! sometimes they ( the docs ) remove themselves from their patients to such a extreme that they forget we too and our children have lives and are actual human beings--not just a 15 minute time slot in their day.I've not heard of MTX causing sterility either and it isn't in any of the literature we were given to read. Do you know if there is a particular level of dose before this is a danger? MTX as an oncology drug is given in very high doses and most people knows cancer drugs may cause sterility - but at what level of dose?
Dee
I think I've heard it put more like "affects fertility" than "causes sterility" - I think it is one more unknown. Google 'methotrexate sterility' or something if you are concerned. I know they use it to terminate ectopic pregnancies. yes---it is just an "unknown"