Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 My 15 year old daughter was diagnosed last month with RA and lupus. I got it when I was 18, so I know some things. She's miserable, but getting better now that she's on prednisone. My concern, she's on celebrex and prednisone. I don't think the celebrex is working (been almost 3 weeks)so doc added plaquinel, mehtotrexate, & folic acid, besides the first 2. We see doc in 4 weeks. Anyone been on all these? side effects? I've been on them separate, except Celebrex. Does it usually take 4 weeks of celebrex to kick in? Thanks in advance! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Hi Deb, First of all your daughter has Juvenile rheumatoid arthritis and Juvenile SLE. Your rheumy is being aggressive and even though you may think the Celebrex isn't working or doing much it realy is.While it will not slow down the diseases it will help with inflimation. Both JRA and JSLE are treated with nonsteroidal anti inflamitories and DMARDS such as Methotrexate and Plaquenel and depending on the type of JRA or severity and with Lupas Steroids are commonly used. If it eases your mind any my 4 yr old was on 300mg Ibuprofin 3xdaily,25mg Methotrexate 1x week sub-que,1mg Folic acid 1xdaily,200mg Plaquenil 1x daily and 12.5mg Enbrel 2x week subque and the not so lovely pred for 20 months with an average dose of around 15mg.So it boils down to 3 DMARDS,Steroids,a non inflamitory and a supplement. There is no telling what drug coctail your daughter may eventualy be on.Some drugs not used for Lupas are used for moderate to severe JRA and some drugs for severe Lupas are not commonly used for JRA,for example Cyclosporine,Cytoxin and Cellcept are more common in Lupas and only severe JRA,while Enbrel,Remicade,Humara and Kineret are for moderate to severe JRA but not Lupas. I hope I didn't confuse you. Sorry that your daughter has not 1 but 2 nasty auto immune diseases.We aren't real experianced with Lupas but we will help anyway we can with the JRA.I am sure there are also some great support groups for the Lupas. You said that you have RA but is your daughter seeing a pediatric rheumatoligist,if not,she should be.JRA and JSLE are not exact copycats of the adult forms and it may be possible that your daughter has systemic onset JRA and not Lupas at all.Mayby I shouldn't have said that,but it's like having the worst of both.You have arthritis,rash,fever and organ inflimation.Just a thought because it is pretty rare to have both. Becki and 6 systemic JRA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Hi Deb: My daughter was on Prednisone, MTX, Placquenil and Folic Acid. I can tell you what she experienced with them: Prednisone: When she was at a higher dose, she started to eat all the time. We couldn't give this child enough food! We tried to make sure that what she was eating was, at least, healthy foods. Fortunately for her, she did not gain much weight. When she was tapering down and got to 2mg she started experience crying spells and was depressed. We stopped at 2mg and her depression and crying stopped. MTX: Caitlin started losing her hair while on this and started to complain of headaches. We were not sure if the headaches were from the Placquenil or the MTX, but because of the hair loss and the fact that she was doing well otherwise, we took her off the MTX. Placquenil: Possible headaches. Went off it (and other meds) and headaches went away. When she is on the Placquenil make sure she sees the eye doctor to check her vision and to ensure that the Placquenil is not causing any problems with her eyes. Folic Acid: When she started losing her hair, she went off the MTX and went on FA to try to prevent any more hair loss. I hope your daughter finds some relief with the new meds. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 HI, Deb. For my son, the Celebrex took a bit. They started out with 400mgs a day and within about 2 months he was up to 800 mgs a day, considered to be the max. That is when the dr added sulfasalazine. The hope was to lower the Celebrex, which did not happen. The sulfa was to 3000mgs a day (also max) and then the dr added methotrexate/folic acid. The use of that has enabled my son to get off the Celebrex completely. He only takes it as needed. So I guess it can take a while for the Celebrex to help, and the dose may need to be adjusted. Once it was upped it did help his pain and inflammation, but the disease was still active and more things began to be affected (it was just his ankles originally). I don't know much about the other drugs your dd is on, sorry. Welcome to the list, Michele (17, pauci & spondy) ?Medications-prednisone, methotrexate My 15 year old daughter was diagnosed last month with RA and lupus. I got it when I was 18, so I know some things. She's miserable, but getting better now that she's on prednisone. My concern, she's on celebrex and prednisone. I don't think the celebrex is working (been almost 3 weeks)so doc added plaquinel, mehtotrexate, & folic acid, besides the first 2. We see doc in 4 weeks. Anyone been on all these? side effects? I've been on them separate, except Celebrex. Does it usually take 4 weeks of celebrex to kick in? Thanks in advance! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 Deb, There are MANY of our children that are on both pred. and mtx. and have lots of experience with both. You are experienced, so you know the good and bad of pred. I call it the " making a deal with the devil drug " ( no religious intention intended). I don't know about the combination of JRA and lupus, but I hope that someone here does. In brief, my son was on Naprosyn (same type of drug as Celebrex except the GI issues) for 3 1/2 years, then hell broke loose with the joints and we immediately went on to mtx and pred. It wasn't a matter of when the celebrex/naprosyn kicked in, but when the mtx. kicked in. So very sorry for your heartbreak of both diseases. I haven't heard of them presenting together before, but I'm no doctor. Keep asking away and somebody here will help you more. Best to your teen girl. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
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