Hi everyone! My name is Annie. I was diagnosed with JRA at the age of 6 and I am now 15. I have tried about every medication that you could possibly think of and nothing has worked except for the one I'm on now. I have been on Remicade, which is given by I.V. for about a year now, and it is helping a great deal. But one problem, everytime I get the infusion I have an allergic reaction and my heart rate goes up and It becomes difficult for me to breath and feels like its puttin pressure on my brain. Well as you would imagine this scared me very badly and I've been thinking strongly about getting of of the medication because of this, but on the other hand I dont want to because as far as the JRA goes it is helping. My mother is wanting me to get off of the medication but she lets me and my doctor make the decissions with my medications so I need opinions. I'm hoping to find someone else who is on Remicade who may be able to relate to what I'm talking about or for just someone to give me some addvice on this. Its a very big decission for a 15 year old to make on their own but its the only medication I've ever found that actually helps with the arthritis but I'm scared that if I stay on it, it may do something to harm me in the long run, so if someone would please drop me a piece or two of advice it would be greatly appreciated. ThanksWell exactly what other meds have you tried? There are A LOT out there, maybe there's one that you've missed that you can try still! Give us your list so far! :)
I've tried: Embrel, Humara, plaquinil, methotrexate, arava, neproxine, diclofinac, prednazone, vioxx, thats some that I can remember but I have taken many more that I cant think of off the top of my head. But none of the above have helped. Wow. And I know this is probably a dumb question, but they DID try varying dosages, right? I am VERY surprised that remicade is working for you and humira did not - because of their INCREDIBLE similarities. Usually it is the other way around, the humira works and remicade does not. I'm wondering how long you were on some of these drugs, as most of them can take upwards of 3-6 months to have an effect. And typically, in agressive RA, you do not just use one of these, you should be on a couple until it's under control.
yes, we've tried everything I could possibly think of and it hasnt worked, thats why I'm so worried about getting off of the remicade, I guess I could try the humira shots again but they didnt work last time. And I've stayed on each drug for about a half year and they havent worked so I'm just on the verge of giving up and going without any medications for a while. I dont know what else to do. I've gotten second opinions from other rhumatologists and they all are telling me to stick with the remicade but its very scary having those reactions everytime i get the treatment.
Are you SURE you were on them that long? No offense, but you're only 15 and some of those drugs just haven't been mainstream that long. I'm not saying you haven't, I just want you to double check. Maybe there's one in there that you weren't on for very long that's worth trying one more time. Other than that...I dunno, I'd keep getting doc opinions. I wasnt on the humira that long maby 3 months at the most so I'm thinking strongly about going back on that. And I'm still using the diclofinac and arava.I'm so sorry Annie! What a tough break, just when you find something that works!
Enbrel worked wonders for me (37 years old, dx with JRA way back in 1971) but last year it just up and quit working for no apparent reason. I'm trying Humira, two months, nothing yet. The next options my Rheumy shared with me were Orencia or Rituxan.
One piece of miscellaneous advice - bring a notebook and a pen with you to the doc's office. Make it your special JRA journal. Write down any symptoms or questions you have between visits, so you don't forget to ask, and write down what the doc says when you're there. I always get nervous at the docs office
Good luck, when do you see your rheumy next?
I had my reaction on my third treatment also. I have taken Enbrel before also but I had bad break outs everytime I took the shoot and it wasnt helping and I stayed on it for about 3 years. But thanks for the tip about taking a notebook to my next appointment and you asked when that was its on the 27th of January. I'm very nervous about going to my next appointment because the last treatment that I got there went horrible, and I'm scared to death about the next one. But thanks and god bless you!