Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! Connie (Kelsey -15- psoriatic spondylitis) Connie --------------------------------- New Messenger with Voice. Call regular phones from your PC for low, low rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Connie , My name is Teri and my daughter has psoriatic also. If you want to email me at my house we can talk about meds & our girls . I dont get to check here very often ... but I do check my personal email every day ! Teri branx4@... > > Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! > > Connie (Kelsey -15- psoriatic spondylitis) > > > > > > > Connie > > > --------------------------------- > New Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Connie Same here I would love to e-mail you or have your daughter talk to mine my daughter is 13 and has spondy as well although they are still not certain which form they are thinking IBD or possibly ankllosing. This is so hard. Everyday it's something else along with the normal teen girl crap they have to go through. My daughter does not know anyone else with this disease she would love to have another girl her age with the same problems to talk to. Tonya ( Ashton 13 spondy) Re: JRA- Flare! Hi Connie , My name is Teri and my daughter has psoriatic also. If you want to email me at my house we can talk about meds & our girls . I dont get to check here very often ... but I do check my personal email every day ! Teri branx4@...<mailto:branx4@...> > > Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! > > Connie (Kelsey -15- psoriatic spondylitis) > > > > > > > Connie > > > --------------------------------- > New Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Connie, Kelsey, Firstly, BIG HUGS! There certainly are heaps of new drugs, just in the nearly three years that Bayly has been battling this disease. They seem more available in the US though, than in Australia (Humira, Anakinra, Remicade, etc, not used in JIA here). Enbrel is the current " flavour of the month " , although Bayly is on the tried-and-true Methotrexate, as he is not yet 4 years old, nor has 20 joints affected- the pre- requisites for getting Enbrel here! Here's hoping it's a short episode, and Kelsey is pain-free again soon. Jo Bayly, 3, extended oligo > > Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! > > Connie (Kelsey -15- psoriatic spondylitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Thanks for the hugs and concern. The doctor gave Kelsey neurontin which is an anti-seizure drug for what he calls pain amplification. Did anyone ever hear of that? He said her nerves have gone haywire from too much pain. So she has psoriatic spondylitis, hypermobility syndrome and now pain amplification. I would say that is enough for one kid. She takes Naprocyn for the arthritis and exercise for the arthritis and hypermobility syndrome. Her doctor wants her to have myofascial massage too, but the soonest I could get an appointment with a PT was April 22. Jo & Grant <joking70@...> wrote: Connie, Kelsey, Firstly, BIG HUGS! There certainly are heaps of new drugs, just in the nearly three years that Bayly has been battling this disease. They seem more available in the US though, than in Australia (Humira, Anakinra, Remicade, etc, not used in JIA here). Enbrel is the current " flavour of the month " , although Bayly is on the tried-and-true Methotrexate, as he is not yet 4 years old, nor has 20 joints affected- the pre- requisites for getting Enbrel here! Here's hoping it's a short episode, and Kelsey is pain-free again soon. Jo Bayly, 3, extended oligo > > Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! > > Connie (Kelsey -15- psoriatic spondylitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Tonya and Teri: I will pass on your email addresses to my daughter. Thanks for your concern. What are your daughter's names? TONYA TROUP <toby10461@...> wrote: Hi Connie Same here I would love to e-mail you or have your daughter talk to mine my daughter is 13 and has spondy as well although they are still not certain which form they are thinking IBD or possibly ankllosing. This is so hard. Everyday it's something else along with the normal teen girl crap they have to go through. My daughter does not know anyone else with this disease she would love to have another girl her age with the same problems to talk to. Tonya ( Ashton 13 spondy) Re: JRA- Flare! Hi Connie , My name is Teri and my daughter has psoriatic also. If you want to email me at my house we can talk about meds & our girls . I dont get to check here very often ... but I do check my personal email every day ! Teri branx4@...<mailto:branx4@...> > > Hi everyone: My daughter is having a horrible flare after three years in remission (with some mini-flares). I know there are new drugs out there since she her arthritis was active three years ago. She used to take azulfadine, but recently had an allergic reaction to bactrim. I think the two drugs are related (sulfa drugs?), so she'll have to try something new. This is a very scary time for her. Just wanted to share because I know you all know what she (and I) are going through. Thanks! > > Connie (Kelsey -15- psoriatic spondylitis) > > > > > > > Connie > > > --------------------------------- > New Messenger with Voice. Call regular phones from your PC for low, low rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 What a coincidence this is …. I haven't checked this board for at least a week and when I do there's a message for me ! My daughters name is Belle and she is eleven and in sixth grade. Belle has psoriatic arthritis and it has a affected her lower spine , both hands , one shoulder , hips , ankles & toes ...this is a beast !!! I am so sorry your daughter is having such a rough time , its so hard to see this happen to our kids . How long has she been diagnosed ? We are 16 months since onset but she wasn't diagnosed for three months after it started . Belle is on a number of med's , our hospital clinic treats this VERY aggressively. This has been pretty tough on belle , she cant always do everything everyone else can but she try's ! Right now she is in a good stretch , Its funny what I can consider good these days would have horrified me a year ago . Give me or Belle a jingle at branx4@.... Teri > > > > Hi everyone: My daughter is having a horrible flare after three > years in remission (with some mini-flares). I know there are new > drugs out there since she her arthritis was active three years ago. > She used to take azulfadine, but recently had an allergic reaction > to bactrim. I think the two drugs are related (sulfa drugs?), so > she'll have to try something new. This is a very scary time for > her. Just wanted to share because I know you all know what she (and > I) are going through. Thanks! > > > > Connie (Kelsey -15- psoriatic spondylitis) > > > > > > > > > > > > > > Connie > > > > > > --------------------------------- > > New Messenger with Voice. Call regular phones from your PC > for low, low rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 Jo, The Neurotin is Seizure medication. But it's also being used for Pain management. has taken it before. My hubby takes it also. He has Neuropathy. It does help. It is also given to help Mental illness as well. Try her on it see how it does. If you don't like it then call the Dr and tell him. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2006 Report Share Posted April 10, 2006 I'm on neurontin as well a long with Topomax for pain/migraines/neuropathic pain. It causes me to feel pretty tired at times and the pain clinic wants to raise the dose of the neurontin but it can help the pain. Myofascial massage can be painful for some people. I went to a massage therapist and it turned out to be painful, than relaxing however, the physical therapist worked on my muscles so deeply that I flared for days and was in tears as she worked on me!!! So I don't know what to say... I hear good things about it and personaly believe it helps but there are limits to how much i can handle so it takes a empathetic PT to help.... good breathing but figuruing out just how much is needed to help pain... Good fortune Issadora On 4/10/06, Robbin40@... <Robbin40@...> wrote: > > Jo, > The Neurotin is Seizure medication. But it's also being used for Pain > management. > has taken it before. My hubby takes it also. He has Neuropathy. It does > help. It is also given to help Mental illness as well. Try her on it see > how it > does. If you don't like it then call the Dr and tell him. > Robbin > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Thanks Issadora for your kind words and information. We will just have to see how the neurontin and the massage work for Kelsey. It is hard to tell if it is making her tired because her arthritis itself makes her very tired, plus she always has a fever (around 101). She's a trooper though, and I am sure she'll keep up trying the medicine and she'll try the massage and whatever else her doctor prescribes in the hopes of feeling better! And, good luck to you. We all just have to keep smiling somehow. :0) Issadora <FlyfreeIzzie@...> wrote: I'm on neurontin as well a long with Topomax for pain/migraines/neuropathic pain. It causes me to feel pretty tired at times and the pain clinic wants to raise the dose of the neurontin but it can help the pain. Myofascial massage can be painful for some people. I went to a massage therapist and it turned out to be painful, than relaxing however, the physical therapist worked on my muscles so deeply that I flared for days and was in tears as she worked on me!!! So I don't know what to say... I hear good things about it and personaly believe it helps but there are limits to how much i can handle so it takes a empathetic PT to help.... good breathing but figuruing out just how much is needed to help pain... Good fortune Issadora On 4/10/06, Robbin40@... <Robbin40@...> wrote: > > Jo, > The Neurotin is Seizure medication. But it's also being used for Pain > management. > has taken it before. My hubby takes it also. He has Neuropathy. It does > help. It is also given to help Mental illness as well. Try her on it see > how it > does. If you don't like it then call the Dr and tell him. > Robbin > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Kelsey has been taking the neurontin for five days now and so far there has been no affect (good or bad). Her pedi rheumy said it would take about two weeks to see any affect. My fingers are certainly crossed that it will ease her pain. Robbin40@... wrote: Jo, The Neurotin is Seizure medication. But it's also being used for Pain management. has taken it before. My hubby takes it also. He has Neuropathy. It does help. It is also given to help Mental illness as well. Try her on it see how it does. If you don't like it then call the Dr and tell him. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 I'm hoping that this is the answer for Kelsey too! It's nice when they can finally find something that works! Alia and Caroline, age 4, poly and uveitis ________________________________ From: [mailto: ] On Behalf Of Connie White Sent: Tuesday, April 11, 2006 7:09 AM Subject: Re: JRA- Flare! Kelsey has been taking the neurontin for five days now and so far there has been no affect (good or bad). Her pedi rheumy said it would take about two weeks to see any affect. My fingers are certainly crossed that it will ease her pain. Robbin40@... wrote: Jo, The Neurotin is Seizure medication. But it's also being used for Pain management. has taken it before. My hubby takes it also. He has Neuropathy. It does help. It is also given to help Mental illness as well. Try her on it see how it does. If you don't like it then call the Dr and tell him. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Goodness, she sounds like me... sigh.... I deal with the whole low grade fever, chills stuff from the JRA and it makes me very tired along with being frequently anemic. Having fibro or myofascial pain issues doesnt bother me as much as the JRA but really adds to the difficulty. I hope the treatments help. For me swimming was very useful too. I use a TENS unit and that brings some minor relief to certain muscles so I guess a little here and a little there working helps.... Anyways, let us know how it goes and if you have individual questions you would like to ask me re. myofascial stuff, please feel welcome to do so.. Issadora (JRA- 5, Fibro- 7) On 4/11/06, Alia.Pranke@... <Alia.Pranke@...> wrote: > > I'm hoping that this is the answer for Kelsey too! It's nice when they > can finally find something that works! > > Alia and Caroline, age 4, poly and uveitis > > ________________________________ > > From: [mailto: ] On > Behalf Of Connie White > Sent: Tuesday, April 11, 2006 7:09 AM > > Subject: Re: JRA- Flare! > > > > Kelsey has been taking the neurontin for five days now and so far there > has been no affect (good or bad). Her pedi rheumy said it would take > about two weeks to see any affect. My fingers are certainly crossed > that it will ease her pain. > > Robbin40@... wrote: Jo, > The Neurotin is Seizure medication. But it's also being used for > Pain > management. > has taken it before. My hubby takes it also. He has Neuropathy. It does > > help. It is also given to help Mental illness as well. Try her on it see > how it > does. If you don't like it then call the Dr and tell him. > Robbin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Jo, It does take alittle time to get in the system. I am crossing my fingers also. Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Issadora- thanks for your input. What is a TENS? I am wondering if Kelsey's first myofascial massage will be very painful for her at the time of the massage and then later she'll feel better? Thanks. Issadora <FlyfreeIzzie@...> wrote: Goodness, she sounds like me... sigh.... I deal with the whole low grade fever, chills stuff from the JRA and it makes me very tired along with being frequently anemic. Having fibro or myofascial pain issues doesnt bother me as much as the JRA but really adds to the difficulty. I hope the treatments help. For me swimming was very useful too. I use a TENS unit and that brings some minor relief to certain muscles so I guess a little here and a little there working helps.... Anyways, let us know how it goes and if you have individual questions you would like to ask me re. myofascial stuff, please feel welcome to do so.. Issadora (JRA- 5, Fibro- 7) On 4/11/06, Alia.Pranke@... <Alia.Pranke@...> wrote: > > I'm hoping that this is the answer for Kelsey too! It's nice when they > can finally find something that works! > > Alia and Caroline, age 4, poly and uveitis > > ________________________________ > > From: [mailto: ] On > Behalf Of Connie White > Sent: Tuesday, April 11, 2006 7:09 AM > > Subject: Re: JRA- Flare! > > > > Kelsey has been taking the neurontin for five days now and so far there > has been no affect (good or bad). Her pedi rheumy said it would take > about two weeks to see any affect. My fingers are certainly crossed > that it will ease her pain. > > Robbin40@... wrote: Jo, > The Neurotin is Seizure medication. But it's also being used for > Pain > management. > has taken it before. My hubby takes it also. He has Neuropathy. It does > > help. It is also given to help Mental illness as well. Try her on it see > how it > does. If you don't like it then call the Dr and tell him. > Robbin > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 TENS- Transcutenous Electrical Nerve Stimulator There are several types availible... mine was prescribed by the pain clinic, insurance paid for it. I read Robbin's story and had to laugh because one day, one of the electrodes moved and I tried to put it back where it was forgetting to turn the unity off.... BUZZZZ... duh.... it wasnt a bad shock but just took me by suprise. Mine has several modes on it so some feel like buzzing and others are more pulsing. The pulsing ones makes my muscles move which can sometimes have a negative effect however in the right areas, it does seem to help some of my pain while it's on. The pain clinic is going to evaluate me on a muscle stimulator which does some of the same work as TENS however it also helps recondition the muscles and there are more electordes for wider placement. The theory is that it helps close the 'pain gait' therefore reducing pain and stimulating endorphins, the natural pain killers in the body. It looks a lot like a pager and can be hidden most times. I have mixed feelings about it but it does seem to provide some relief and I guess that's better than none! For myofascial massage, many times it hurts during it.... it depends on how deeply they go and how tight you are..... it has brought me to tears with the physical therapist but i breathed as much as possible and in the long run, it knocked out some of my really bad knots. The relief did come latter but I also found that massage everyday was helpful... so the muscles dont have a chance to tighten up again.... I have this great massager that my mom and others use on me ... it's pretty potent... and I use that in between PT sessions. Sometimes I invest in getting a massage at the massage school.... i only will see the professionals.. I dont know how it will be for your daughter... and hopefully the massager is very skilled and will work slowly... however the deeper the massage, the more relief if it doesnt knock you into to much pain!! it's a delicate balance... I have read that the good thing with kids is that sometimes the myofascial isnt as deeply entrenched and widespread thus making treatment more successful.. let me know.... I can also give you a website on the TENS unit place my pain clinic uses. The site is pretty informative in explaining it, etc if you're interested. Issadora On 4/12/06, Connie White <jasperkelseyrose@...> wrote: > > Issadora- thanks for your input. What is a TENS? I am wondering if > Kelsey's first myofascial massage will be very painful for her at the time > of the massage and then later she'll feel better? Thanks. > > Issadora <FlyfreeIzzie@...> wrote: Goodness, she sounds like me... > sigh.... > > I deal with the whole low grade fever, chills stuff from the JRA and it > makes me very tired along with being frequently anemic. Having fibro or > myofascial pain issues doesnt bother me as much as the JRA but really adds > to the difficulty. > > I hope the treatments help. For me swimming was very useful too. I use a > TENS unit and that brings some minor relief to certain muscles so I guess > a > little here and a little there working helps.... > > Anyways, let us know how it goes and if you have individual questions you > would like to ask me re. myofascial stuff, please feel welcome to do so.. > > Issadora (JRA- 5, Fibro- 7) > > > On 4/11/06, Alia.Pranke@... <Alia.Pranke@...> wrote: > > > > I'm hoping that this is the answer for Kelsey too! It's nice when they > > can finally find something that works! > > > > Alia and Caroline, age 4, poly and uveitis > > > > ________________________________ > > > > From: [mailto: ] On > > Behalf Of Connie White > > Sent: Tuesday, April 11, 2006 7:09 AM > > > > Subject: Re: JRA- Flare! > > > > > > > > Kelsey has been taking the neurontin for five days now and so far there > > has been no affect (good or bad). Her pedi rheumy said it would take > > about two weeks to see any affect. My fingers are certainly crossed > > that it will ease her pain. > > > > Robbin40@... wrote: Jo, > > The Neurotin is Seizure medication. But it's also being used for > > Pain > > management. > > has taken it before. My hubby takes it also. He has Neuropathy. It does > > > > help. It is also given to help Mental illness as well. Try her on it see > > how it > > does. If you don't like it then call the Dr and tell him. > > Robbin > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 Just wanted to keep everyone posted on Kelsey's progress. She's been taking Neurontin for three weeks now and it seemed to be helping after about two weeks, but then just stopped helping. Her pedi rheumy said it would help sometimes then stop then start again depending on stress levels and allergies (to pollen), etc. She also takes Naprocyn (375mg) twice daily, which upsets her stomach, but keeps the joint swelling down some. She has had two PT appointments and some myofascial massage. While the massage and exercises hurt her even more than she is already hurting, she thinks that a couple of days afterwards, she feels better. Through it all she gets up every day without prompting from me and goes off to school. Isn't it amazing how tough these kids who are suffering are? It is not just Kelsey, it is all our kids no matter their ages. I often wonder what I'd be like if I had to live with what she lives with. I don't think I'd be as strong and brave, that's for sure. Connie and Kelsey (15 psoriatic spondylitis, hypermobility syndrome, pain amplification syndrome) Issadora <FlyfreeIzzie@...> wrote: Goodness, she sounds like me... sigh.... I deal with the whole low grade fever, chills stuff from the JRA and it makes me very tired along with being frequently anemic. Having fibro or myofascial pain issues doesnt bother me as much as the JRA but really adds to the difficulty. I hope the treatments help. For me swimming was very useful too. I use a TENS unit and that brings some minor relief to certain muscles so I guess a little here and a little there working helps.... Anyways, let us know how it goes and if you have individual questions you would like to ask me re. myofascial stuff, please feel welcome to do so.. Issadora (JRA- 5, Fibro- 7) On 4/11/06, Alia.Pranke@... <Alia.Pranke@...> wrote: > > I'm hoping that this is the answer for Kelsey too! It's nice when they > can finally find something that works! > > Alia and Caroline, age 4, poly and uveitis > > ________________________________ > > From: [mailto: ] On > Behalf Of Connie White > Sent: Tuesday, April 11, 2006 7:09 AM > > Subject: Re: JRA- Flare! > > > > Kelsey has been taking the neurontin for five days now and so far there > has been no affect (good or bad). Her pedi rheumy said it would take > about two weeks to see any affect. My fingers are certainly crossed > that it will ease her pain. > > Robbin40@... wrote: Jo, > The Neurotin is Seizure medication. But it's also being used for > Pain > management. > has taken it before. My hubby takes it also. He has Neuropathy. It does > > help. It is also given to help Mental illness as well. Try her on it see > how it > does. If you don't like it then call the Dr and tell him. > Robbin > > > Quote Link to comment Share on other sites More sharing options...
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