Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Billie-jo, Welcome to the list. I am sorry you have to be here due to your child being ill, but you have come to the right place. This group is wonderful and very knowledgeable. I too am fairly new, but they have all made me feel very welcome. My first thought is if your daughter doesn't seem to be controlled with the naproxen that maybe your rheumy should try another medication in addition to it. Usually the next step would be to add methotrexate. I know it's tough to put your child on such a harsh drug, as most of us have felt the same way, but it's better than her getting joint damage. That may be something you want to ask the doctor. My second thought is about the itchy bumps and ridges in the finger nails. I don't know much about it, but it is possible that it could be psoriatic arthritis. That is what they first thought my daughter had. Like I said, I don't know much about it, but you could research it on the internet. Plus I know there are some members on the group that have psoriatic arthritis. I think usually the nails are more pitted than just have ridges, but I'm just not sure. I would definitely let the ped. rheumy know of the mouth sores, itchy bumps, and the ridges in the nails. Please let us know what the doctor says. Hugs, , mixed connective tissue disease, Lupus, arthris, IBS mom to 15, RF positive Poly JRA, asthma, IBS, back issues Jayna 12, ADHD, OCD, ODD, now positive ANA > > I just found this list... I can't believe it took me so long or that > it is so active. My daughter was finally diagnosed with JRA in July. > We are VERY lucky to have a pediatric rheumatologist in our town. > a has had knee pain on and off for years. We were originally told > that they were " growing pains " . Last October she was having so much > back, neck and shoulder pain that she missed over a week of school. > November and December weren't much better. She first saw the ped. > rheum. in November (on her tenth birthday). She did some blood work > (which ahs all been negative) and put her Naproxen and by the end of > January everything was great. Not realizing what was going on we took > her off the Naproxen thinking whatever she " had " was better. Then it > started all over in May. We got her back in to see the Dr. and were > basically told that she needed to be back on the Naproxen long term. > She has been back on the Naproxen long term since then and we finally > got the JRA diagnosis in July. She does good for a while and then has > a bad week. We basically let her whatever she feels up to. She > definitely pushes herself, sometimes too much. > Lately she has had itchy bumps on her scalp and she has been getting > sores in her mouth. She also just showed me that she has ridges on > her fingernails. Has anyone else experienced this. I don't know if > it's JRA related or something different. > Thank you! > Billie-jo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Hi Billie-jo - Welcome to the group! A couple thoughts came to mind when reading your post. First off - the nail ridges made me think of psoriatic arthritis(PsA)as well. PsA is treated the same as JRA though so in the medical world I don't think that it really matters what it is dx as. We have been through that, wondering if Grant really has psoriasis or not. 2 different dx from 2 different Derms. But I decided that since our ped rheumy doesn't think it is a big deal then I'm going with the derm's opinion that I trust most and that is that he has psoriasis. I found this website about Naproxen side effects. http://www.webmd.com/drugs/mono-1289-NAPROXEN+-+ORAL.aspx? drugid=5173 & drugname=Naproxen+Oral & pagenumber=6 There are a lot of them listed but one of them are mouth sores. I would definately let your Rheumy know about this. Grant ended up with pseudo porphyria which is a rare side effect from prolonged use of Naproxen. It is when your skin becomes " fragile " on his face. So he would get a scab anytime he got bumped on his face! Which was a lot! " She does good for a while and then has a bad week " That statment makes me wonder if you shouldn't be adding another medication like methotrexate to her medications. Naproxen does not stop the progression of the disease. It simply decreases inflammation and stops pain. In order to assure that damage to the joint isn't happening you should be on a DMARD like MTX (or a TNF blocker which is usually added if the DMARD isn't working). I would also discuss that with your rhuemy. Also - if it is psoriasis that she has, the Mtx helps with that too! & Grant(11, PsA/Uveitis) > > I just found this list... I can't believe it took me so long or that > it is so active. My daughter was finally diagnosed with JRA in July. > We are VERY lucky to have a pediatric rheumatologist in our town. > a has had knee pain on and off for years. We were originally told > that they were " growing pains " . Last October she was having so much > back, neck and shoulder pain that she missed over a week of school. > November and December weren't much better. She first saw the ped. > rheum. in November (on her tenth birthday). She did some blood work > (which ahs all been negative) and put her Naproxen and by the end of > January everything was great. Not realizing what was going on we took > her off the Naproxen thinking whatever she " had " was better. Then it > started all over in May. We got her back in to see the Dr. and were > basically told that she needed to be back on the Naproxen long term. > She has been back on the Naproxen long term since then and we finally > got the JRA diagnosis in July. She does good for a while and then has > a bad week. We basically let her whatever she feels up to. She > definitely pushes herself, sometimes too much. > Lately she has had itchy bumps on her scalp and she has been getting > sores in her mouth. She also just showed me that she has ridges on > her fingernails. Has anyone else experienced this. I don't know if > it's JRA related or something different. > Thank you! > Billie-jo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 I found your response interesting. meagan also has good weeks and bad ones and is only being treated with naproxen. The rheum hasn't seen her swollen, red or hot, which has happened, but not very often. It is mostly just leg/foot/toe pain that she has. She will have breakthrough pain even on the naproxen. Things are better right now for her, because activity definately makes things worse, and she's not able to run around and play hard during the cold weather. I hate to see her in pain. pam Re: New to the list > Hi Billie-jo - Welcome to the group! A couple thoughts > came to mind > when reading your post. First off - the nail ridges made > me think > of psoriatic arthritis(PsA)as well. PsA is treated the > same as JRA > though so in the medical world I don't think that it really > matters > what it is dx as. We have been through that, wondering if > Grant > really has psoriasis or not. 2 different dx from 2 > different > Derms. But I decided that since our ped rheumy doesn't > think it is > a big deal then I'm going with the derm's opinion that I trust > most > and that is that he has psoriasis. > > I found this website about Naproxen side effects. > http://www.webmd.com/drugs/mono-1289-NAPROXEN+-+ORAL.aspx? > drugid=5173 & drugname=Naproxen+Oral & pagenumber=6 > > There are a lot of them listed but one of them are mouth > sores. I > would definately let your Rheumy know about this. Grant > ended up > with pseudo porphyria which is a rare side effect from prolonged > use > of Naproxen. It is when your skin becomes " fragile " on his > face. > So he would get a scab anytime he got bumped on his face! Which > was > a lot! > > " She does good for a while and then has a bad > week " > > That statment makes me wonder if you shouldn't be adding another > medication like methotrexate to her medications. Naproxen > does not > stop the progression of the disease. It simply decreases > inflammation and stops pain. In order to assure that > damage to the > joint isn't happening you should be on a DMARD like MTX (or a > TNF > blocker which is usually added if the DMARD isn't > working). I would > also discuss that with your rhuemy. Also - if it is > psoriasis that > she has, the Mtx helps with that too! > > & Grant(11, PsA/Uveitis) > > > > > > > I just found this list... I can't believe it took me so long > or > that > > it is so active. My daughter was finally diagnosed with > JRA in > July. > > We are VERY lucky to have a pediatric rheumatologist in > our town. > > a has had knee pain on and off for years. We were > originally > told > > that they were " growing pains " . Last October she was > having so > much > > back, neck and shoulder pain that she missed over a week of > school. > > November and December weren't much better. She first saw > the ped. > > rheum. in November (on her tenth birthday). She did some > blood > work > > (which ahs all been negative) and put her Naproxen and by the > end > of > > January everything was great. Not realizing what was > going on we > took > > her off the Naproxen thinking whatever she " had " was > better. Then > it > > started all over in May. We got her back in to see the > Dr. and > were > > basically told that she needed to be back on the Naproxen long > term. > > She has been back on the Naproxen long term since then and we > finally > > got the JRA diagnosis in July. She does good for a while > and then > has > > a bad week. We basically let her whatever she feels up > to. She > > definitely pushes herself, sometimes too much. > > Lately she has had itchy bumps on her scalp and she has been > getting > > sores in her mouth. She also just showed me that she has > ridges on > > her fingernails. Has anyone else experienced this. I > don't know if > > it's JRA related or something different. > > Thank you! > > Billie-jo > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Pam, Have you tried taking pictures of the joints that get red, hot, and swollen and then taken them with you to the doctor? I have had to do this on a number of occassions because by the time we get to the rheumy she is no longer showing signs of inflammation. My daughter started out like Meagan. She started out with her wrists and all her fingers. On our first appointment she had no inflammation and the doctor just dismissed us. She had a major flare 2 weeks later when the rheumy was away at a conference so we took pics and he saw us as soon as he got back. That is when we got our diagnosis, but I'm sure she had it for many, many years prior. Now she has many, many joints involved. She too doesn't do many activities as she will regret it by the next day. I would definitely talk to the doctor about maybe adding methotrexate. It will limit the joint damage being done by the disease. > > > > > > I just found this list... I can't believe it took me so long > > or > > that > > > it is so active. My daughter was finally diagnosed with > > JRA in > > July. > > > We are VERY lucky to have a pediatric rheumatologist in > > our town. > > > a has had knee pain on and off for years. We were > > originally > > told > > > that they were " growing pains " . Last October she was > > having so > > much > > > back, neck and shoulder pain that she missed over a week of > > school. > > > November and December weren't much better. She first saw > > the ped. > > > rheum. in November (on her tenth birthday). She did some > > blood > > work > > > (which ahs all been negative) and put her Naproxen and by the > > end > > of > > > January everything was great. Not realizing what was > > going on we > > took > > > her off the Naproxen thinking whatever she " had " was > > better. Then > > it > > > started all over in May. We got her back in to see the > > Dr. and > > were > > > basically told that she needed to be back on the Naproxen long > > term. > > > She has been back on the Naproxen long term since then and we > > finally > > > got the JRA diagnosis in July. She does good for a while > > and then > > has > > > a bad week. We basically let her whatever she feels up > > to. She > > > definitely pushes herself, sometimes too much. > > > Lately she has had itchy bumps on her scalp and she has been > > getting > > > sores in her mouth. She also just showed me that she has > > ridges on > > > her fingernails. Has anyone else experienced this. I > > don't know if > > > it's JRA related or something different. > > > Thank you! > > > Billie-jo > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Thanks for the advice, I'll definately take pics next time. Like I said, she doesn't swell and red too much, and it's nothing very dramatic, but I'll try pics next time. Thanks for that idea. pam Re: New to the list > Pam, > > Have you tried taking pictures of the joints that get red, hot, > and > swollen and then taken them with you to the doctor? I have had > to do > this on a number of occassions because by the time we get to the > rheumy she is no longer showing signs of inflammation. My > daughter > started out like Meagan. She started out with her wrists and all > her > fingers. On our first appointment she had no inflammation and > the > doctor just dismissed us. She had a major flare 2 weeks later > when > the rheumy was away at a conference so we took pics and he saw > us as > soon as he got back. That is when we got our diagnosis, but I'm > sure > she had it for many, many years prior. Now she has many, many > joints > involved. She too doesn't do many activities as she will regret > it by > the next day. > > I would definitely talk to the doctor about maybe adding > methotrexate. It will limit the joint damage being done by the > disease. > > > > > > > > > > > > > I just found this list... I can't believe it took me so > long > > > or > > > that > > > > it is so active. My daughter was finally diagnosed > with > > > JRA in > > > July. > > > > We are VERY lucky to have a pediatric rheumatologist > in > > > our town. > > > > a has had knee pain on and off for years. We > were > > > originally > > > told > > > > that they were " growing pains " . Last October she was > > > having so > > > much > > > > back, neck and shoulder pain that she missed over a week > of > > > school. > > > > November and December weren't much better. She first > saw > > > the ped. > > > > rheum. in November (on her tenth birthday). She did > some > > > blood > > > work > > > > (which ahs all been negative) and put her Naproxen and by > the > > > end > > > of > > > > January everything was great. Not realizing what was > > > going on we > > > took > > > > her off the Naproxen thinking whatever she " had " was > > > better. Then > > > it > > > > started all over in May. We got her back in to see > the > > > Dr. and > > > were > > > > basically told that she needed to be back on the Naproxen > long > > > term. > > > > She has been back on the Naproxen long term since then and > we > > > finally > > > > got the JRA diagnosis in July. She does good for a > while > > > and then > > > has > > > > a bad week. We basically let her whatever she feels > up > > > to. She > > > > definitely pushes herself, sometimes too much. > > > > Lately she has had itchy bumps on her scalp and she has > been > > > getting > > > > sores in her mouth. She also just showed me that she > has > > > ridges on > > > > her fingernails. Has anyone else experienced this. I > > > don't know if > > > > it's JRA related or something different. > > > > Thank you! > > > > Billie-jo > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Hi and welcome to the list. You've gotten lots of great advice already (I too agree with the PsA possibility) and wanted to mention about the mouth sores. My son would get those and found relief from rinsing his mouth with Listerine. There are lots of good flavors now, so perhaps your daughter can find one to try. Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of thejarys Sent: Saturday, January 31, 2009 2:53 PM Subject: New to the list I just found this list... I can't believe it took me so long or that it is so active. My daughter was finally diagnosed with JRA in July. We are VERY lucky to have a pediatric rheumatologist in our town. a has had knee pain on and off for years. We were originally told that they were " growing pains " . Last October she was having so much back, neck and shoulder pain that she missed over a week of school. November and December weren't much better. She first saw the ped. rheum. in November (on her tenth birthday). She did some blood work (which ahs all been negative) and put her Naproxen and by the end of January everything was great. Not realizing what was going on we took her off the Naproxen thinking whatever she " had " was better. Then it started all over in May. We got her back in to see the Dr. and were basically told that she needed to be back on the Naproxen long term. She has been back on the Naproxen long term since then and we finally got the JRA diagnosis in July. She does good for a while and then has a bad week. We basically let her whatever she feels up to. She definitely pushes herself, sometimes too much. Lately she has had itchy bumps on her scalp and she has been getting sores in her mouth. She also just showed me that she has ridges on her fingernails. Has anyone else experienced this. I don't know if it's JRA related or something different. Thank you! Billie-jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Just a little pointer on taking the pictures.... if your camera have the close-up option with the little flower, use that option with no flash and set the joint over a dark black or brown towel or blanket. Our rheumy gave us these pointers and said it helped give the best picture to see redness and swelling. I hope this helps you. =) > > > > > > > > > > I just found this list... I can't believe it took me so > > long > > > > or > > > > that > > > > > it is so active. My daughter was finally diagnosed > > with > > > > JRA in > > > > July. > > > > > We are VERY lucky to have a pediatric rheumatologist > > in > > > > our town. > > > > > a has had knee pain on and off for years. We > > were > > > > originally > > > > told > > > > > that they were " growing pains " . Last October she was > > > > having so > > > > much > > > > > back, neck and shoulder pain that she missed over a week > > of > > > > school. > > > > > November and December weren't much better. She first > > saw > > > > the ped. > > > > > rheum. in November (on her tenth birthday). She did > > some > > > > blood > > > > work > > > > > (which ahs all been negative) and put her Naproxen and by > > the > > > > end > > > > of > > > > > January everything was great. Not realizing what was > > > > going on we > > > > took > > > > > her off the Naproxen thinking whatever she " had " was > > > > better. Then > > > > it > > > > > started all over in May. We got her back in to see > > the > > > > Dr. and > > > > were > > > > > basically told that she needed to be back on the Naproxen > > long > > > > term. > > > > > She has been back on the Naproxen long term since then and > > we > > > > finally > > > > > got the JRA diagnosis in July. She does good for a > > while > > > > and then > > > > has > > > > > a bad week. We basically let her whatever she feels > > up > > > > to. She > > > > > definitely pushes herself, sometimes too much. > > > > > Lately she has had itchy bumps on her scalp and she has > > been > > > > getting > > > > > sores in her mouth. She also just showed me that she > > has > > > > ridges on > > > > > her fingernails. Has anyone else experienced this. I > > > > don't know if > > > > > it's JRA related or something different. > > > > > Thank you! > > > > > Billie-jo > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Thank you. I'll remember that, and put it in a new binder! pam Re: New to the list > Just a little pointer on taking the pictures.... > > if your camera have the close-up option with the little flower, > use > that option with no flash and set the joint over a dark black or > brown towel or blanket. > > Our rheumy gave us these pointers and said it helped give the > best > picture to see redness and swelling. > > I hope this helps you. =) > > > > > > > > > > > > > > I just found this list... I can't believe it took me > so > > > long > > > > > or > > > > > that > > > > > > it is so active. My daughter was finally > diagnosed > > > with > > > > > JRA in > > > > > July. > > > > > > We are VERY lucky to have a pediatric > rheumatologist > > > in > > > > > our town. > > > > > > a has had knee pain on and off for years. We > > > were > > > > > originally > > > > > told > > > > > > that they were " growing pains " . Last October she > was > > > > > having so > > > > > much > > > > > > back, neck and shoulder pain that she missed over a > week > > > of > > > > > school. > > > > > > November and December weren't much better. She > first > > > saw > > > > > the ped. > > > > > > rheum. in November (on her tenth birthday). She > did > > > some > > > > > blood > > > > > work > > > > > > (which ahs all been negative) and put her Naproxen and > by > > > the > > > > > end > > > > > of > > > > > > January everything was great. Not realizing what > was > > > > > going on we > > > > > took > > > > > > her off the Naproxen thinking whatever she " had " was > > > > > better. Then > > > > > it > > > > > > started all over in May. We got her back in to > see > > > the > > > > > Dr. and > > > > > were > > > > > > basically told that she needed to be back on the > Naproxen > > > long > > > > > term. > > > > > > She has been back on the Naproxen long term since then > and > > > we > > > > > finally > > > > > > got the JRA diagnosis in July. She does good for > a > > > while > > > > > and then > > > > > has > > > > > > a bad week. We basically let her whatever she > feels > > > up > > > > > to. She > > > > > > definitely pushes herself, sometimes too much. > > > > > > Lately she has had itchy bumps on her scalp and she > has > > > been > > > > > getting > > > > > > sores in her mouth. She also just showed me that > she > > > has > > > > > ridges on > > > > > > her fingernails. Has anyone else experienced > this. I > > > > > don't know if > > > > > > it's JRA related or something different. > > > > > > Thank you! > > > > > > Billie-jo > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 I just read this about the fingernails! I showed my ped Mollys fingernails a long time ago and she said it was nothing! We are still trying to figure out what is wrong. Yesterday they did more blood work and are also checking for lupus. Her GI told us to see a Rhuematologist but I thought we would see the Ped one more time. Her eyes are also bothering her more now. Tricia > > > > > > showed me that she has ridges on > her fingernai > > >          Hi, that little statement right there is a VERY powerful one.Report it to the ped rheumy ASAP!!!! You may have your real first symptom of a type of JA called Psoriatic Arthritis. > The skin condition has not happened yet which is very common.The diagnosos starts out very vague,looking more like pauci (fewer then 4 joints) and only young girls truly get.It can and will effect joints,tendons,ligaments,etc but early on there is not much if any swelling,just pain and tenderness.Thats even up to the person and how far the disease has progressed. >   Treatment has come so FAR in the last decade there is every hope that your child spends most of it symptom free. If they dismiss the ridges in the nails it is time to drive for a second opinion and you bet we can help. >  > > > From: thejarys <Beamjary@...> > > Sent: Saturday, January 31, 2009 2:52:45 PM > Subject: New to the list > > I just found this list... I can't believe it took me so long or that > it is so active. My daughter was finally diagnosed with JRA in July. > We are VERY lucky to have a pediatric rheumatologist in our town. > a has had knee pain on and off for years. We were originally told > that they were " growing pains " . Last October she was having so much > back, neck and shoulder pain that she missed over a week of school. > November and December weren't much better. She first saw the ped. > rheum. in November (on her tenth birthday). She did some blood work > (which ahs all been negative) and put her Naproxen and by the end of > January everything was great. Not realizing what was going on we took > her off the Naproxen thinking whatever she " had " was better. Then it > started all over in May. We got her back in to see the Dr. and were > basically told that she needed to be back on the Naproxen long term. > She has been back on the Naproxen long term since then and we finally > got the JRA diagnosis in July. She does good for a while and then has > a bad week. We basically let her whatever she feels up to. She > definitely pushes herself, sometimes too much. > Lately she has had itchy bumps on her scalp and she has been getting > sores in her mouth. She also just showed me that she has ridges on > her fingernails. Has anyone else experienced this. I don't know if > it's JRA related or something different. > Thank you! > Billie-jo > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2009 Report Share Posted February 11, 2009 Tricia, If you have not seen a ped. rheumatologist, I would made an appointment right away. Is the pediatrician the one telling your her fingernails are nothing? If so, it's because they are not trained as a ped. rheumy is. To them it may be nothing, but to the ped. rheumy it may be the link you need to get the diagnosis. If her eyes are bothering her then I would take her to an opthamologist right away. > > > > > > > > > > > > showed me that she has ridges on > > her fingernai > > > > > >          Hi, that little statement right there is a VERY powerful > one.Report it to the ped rheumy ASAP!!!! You may have your real > first symptom of a type of JA called Psoriatic Arthritis. > > The skin condition has not happened yet which is very common.The > diagnosos starts out very vague,looking more like pauci (fewer then 4 > joints) and only young girls truly get.It can and will effect > joints,tendons,ligaments,etc but early on there is not much if any > swelling,just pain and tenderness.Thats even up to the person and > how far the disease has progressed. > >   Treatment has come so FAR in the last decade there is every hope > that your child spends most of it symptom free. If they dismiss the > ridges in the nails it is time to drive for a second opinion and you > bet we can help. > >  > > > > > > From: thejarys <Beamjary@> > > > > Sent: Saturday, January 31, 2009 2:52:45 PM > > Subject: New to the list > > > > I just found this list... I can't believe it took me so long or that > > it is so active. My daughter was finally diagnosed with JRA in July. > > We are VERY lucky to have a pediatric rheumatologist in our town. > > a has had knee pain on and off for years. We were originally > told > > that they were " growing pains " . Last October she was having so much > > back, neck and shoulder pain that she missed over a week of school. > > November and December weren't much better. She first saw the ped. > > rheum. in November (on her tenth birthday). She did some blood work > > (which ahs all been negative) and put her Naproxen and by the end of > > January everything was great. Not realizing what was going on we > took > > her off the Naproxen thinking whatever she " had " was better. Then it > > started all over in May. We got her back in to see the Dr. and were > > basically told that she needed to be back on the Naproxen long > term. > > She has been back on the Naproxen long term since then and we > finally > > got the JRA diagnosis in July. She does good for a while and then > has > > a bad week. We basically let her whatever she feels up to. She > > definitely pushes herself, sometimes too much. > > Lately she has had itchy bumps on her scalp and she has been getting > > sores in her mouth. She also just showed me that she has ridges on > > her fingernails. Has anyone else experienced this. I don't know if > > it's JRA related or something different. > > Thank you! > > Billie-jo > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.