Yet another med change

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Joanna

Posted Sunday, December 07, 2003 5:57 PM

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Last Login: Thursday, July 31, 2008 12:33 PM
Posts: 44, Visits: 0

My 10 y.o. son is newly diagnosed with poly JRA; he doesn't have much deformity BUT the meds have made him so sick! First Feldene, then Naproxyn -- now Patrick is barely eating and we can see that he's losing weight; this has been going on for about 15 days now. Everything he eats goes right through him. His ped. tested him for giardia/salmonella, etc bc his rheumy "doubts" that he could react so severly to the meds. He stopped taking anything several days ago and is still sick, but now he's in pain, too. Topping it off is the "no dairy" diet until he's better, which means he can't use his asthma med (Advair) because it's lactose-based! His rheumy says we'll try something else when he's better, and that we have to try it for "several days" and any side-effects will dissipate as his body adjusts. Can anybody say that has actually happened? His reaction is so severe I can't imagine him being functional on either of these meds, but I don't know what she'll "pick" for him next. Sorry to go on--you all sound so calm and I feel like I'm going to cry just watching him walk around.

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AmyB

Posted Sunday, December 07, 2003 7:08 PM

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Last Login: Thursday, July 31, 2008 12:30 PM
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Joanna, Welcome to the Board. My daughter was diagnoised with poly 2 years ago. At diagnosis, she was in really bad shape with many, many inflamed joints, not wanting to walk. She now is 7 and has hardly any inflamation and is doing well. I think even some of the deformity in her hands has reduced. Anyway, there is hope in your son feeling better. Keep pushing for a better medicine. At diagnosis the doctor immediately put her on Naproxyn and Methotrexate. Over the years we have switched medicines several times. We are currently on Trilisate (an aspirin derivitive). Keep talking to the Rhuem about what is a better medicine with less side effects. Read as much as you can so you can be educated on the medicines and keep a pain diary. I would write in it daily in the beginning, but now I mostly write in less than once a week. In the beginning, it is important to note every side effect, so you can try and figure out what causes what. Hang in there and take care, Amy

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CynthiaJ

Posted Sunday, December 07, 2003 7:29 PM

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Last Login: Thursday, July 31, 2008 12:32 PM
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Joanna- Sorry to hear Patrick is having so many problems. I thought I would share my story with you. My daughter who will be three in Feb. was diagnosed with Allergic Colitis at 4 months. She had blood in her stools (loose) that continue to this day. She is chronically anemic and her sed rate plus the crp rate are both extremely high. She was on NO dairy, egg, soy, chocolate, peanut butter, ect.... diet for the past two years. Needless to say, it has not helped her condition. She has either JRA or JA associated with Crohns (she was tested for that two weeks ago because she was not responding to treatment). She had a joint injection on her left knee on the 21st of November to prevent further deformity. During her lifetime, she has been allergic to almost every antibiotic or medication given to her (diahrea is worse plus a rash most of the time). It sounds to me like your son is reacting to at least one of the medications he is on. The doctors are reluctant most of the time because they think it is just an intolerance not an allergy. The body will adjust after taking it for a period of time, but this may not be the case with your son. The weight loss is common when an intolerance or allergy is present. My daughter is 37 inches tall and weighs between 22 and 27 pounds ( she fluctuates 5 pound either way). It all depends if she is having a flare at the time. I would suggest you see a peds Gasteroenterologist to discuss your case. Your son may have an underlying GI condition associated with the JRA. This is very common- my daughter is one of them. We had to do the joint injection because of her allergies. Her colon can not tolerate the drugs used to treat the arthritis. She is on Prednisone now just because we do not have a choice. Her last round of lab test were so abnormal and her Upper GI series x-rays showed some abnormalities in her small intestine/top of the large. I hope all this information helps. You know your son better than the doctors. If you think he is reacting to the meds then demand they try a different drug. In the mean time, watch his weight and his appetite. I would continue the asthma medication too. I use advair and I am lactose intolerant but have no problem with it. Keep the faith and welcome to the board. Take care Cindy

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TerryB

Posted Monday, December 08, 2003 3:59 AM

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Last Login: Thursday, July 31, 2008 12:31 PM
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We had almost exactly the same situation except the medication in question was Motrin. It ended up that my daughter was both lactose intolerant and intolerant of motrin. We asked for a Pediatric Gastroenterologist when she started having the belly aches. We ended up on Vioxx at the time which is an NSAID like Motrin and Naproxyn but much more gentile on the tummy. It is not approved for children but is actually a safer NSAID so is widely used. I would push to see a Ped. Gastro. Terry

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Joanna

Posted Monday, December 08, 2003 10:56 AM

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Last Login: Thursday, July 31, 2008 12:33 PM
Posts: 44, Visits: 0

I had been keeping a diary of what he's eating, but it is a better suggestion to log the whole day's experience somehow; thank you. Patrick's sed rate is actually very low--nearly normal--which puzzles his doctors. Other than tons of blood work there's been no testing for GI problems specifically, but it's early for us still. Patrick is one of those introverted boys, and this has been such a trial for him--all the attention and concern, which is certainly well-meant but nevertheless hard for him. We have a teenage friend with MS, who told me that he would be glad to talk to Patrick about life with a chronic illness, so that was my bright spot for the day!

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