Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 In a message dated 11/16/04 12:38:58 PM Central Daylight Time, sonia1md@... writes: > How long do you think it will take before we start seeing some relief > with the use of the pred? > > Hi , If you had kept Aundrea at home you probably would have seen improvement within a couple of hours.It works very quickly and in a couple days you should see even more improvement.She should start having less stiffness and pain. The only problem with the rapid taper is they didn't do anything differant with DMARDS so the pred is just sugar coating the actual problem.The taper most likely will cause the symptoms to come back more and more as the dose is lessened. I pray it doesn't and she just needs a little something to help get her over this flare. Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hey . I am sorry to hear that Aundrea has had to resort to prednisone. With that dosage, you should see a difference in a few days. I would be shocked if it takes more than a week. You are staying at 20mg for 5 days? If she isn't feeling better in 5 days I would speak with her rheumy before tapering if down to 15mg. Caroline was on 30mg for about 6+ months and it did wonders. We are now down to about 5 mg daily, but we can't budge from that amount. Good luck. I hope she continues to take them. It must have been so sad to find all those pills . Poor kid! Alia and Caroline, age 2, poly and uveitis starting prednisone Hello everyone, Well, I called the doctor today to see about getting Aundrea some crutches and her doc felt it was time to start Aundrea on Prednisone. I was kind of leary about it, but when I looked back at her health jounal I could see how everything just really went down hill last winter and her rheumy is hoping that the pred will stop the flare in its tracks before it becomes harder to manage. So I gave Aundrea her first dose this morning. She is starting on 20mg a day and will then taper down 5 mg. every 5 days. (Does that dosing seem normal to you guys?) Some of you might recall a year ago when they prescribed prednisone for Aundrea and everyone was so baffled as to why she wasn't improving. Later, I discovered the pills hidden all over the house. Well, today I stood right beside her and watched her take every one of them. She was a real trooper about it, but then again she is in so much pain that I think she might try anything. How long do you think it will take before we start seeing some relief with the use of the pred? (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi I'm actually new here. I have a 2 year old (Madison) with Pauci onset JRA and now her NEW Ped. Rheumy is considering her Poly JRA 5 joints to date. Her doctor just put her on Methotrexate once a week (.2 ml) and prednisolone daily 3 cc then tapering to 1 cc. Madison has been on the Prednisolone for 6 days now and even with the very first dose she wasn't walking with her leg stiff anymore so it worked pretty quickly on her. Hope this helps and I am enjoying reading all of your posts! Thanks!!!!! Ashlee (Madison, 2 Poly) starting prednisone Hello everyone, Well, I called the doctor today to see about getting Aundrea some crutches and her doc felt it was time to start Aundrea on Prednisone. I was kind of leary about it, but when I looked back at her health jounal I could see how everything just really went down hill last winter and her rheumy is hoping that the pred will stop the flare in its tracks before it becomes harder to manage. So I gave Aundrea her first dose this morning. She is starting on 20mg a day and will then taper down 5 mg. every 5 days. (Does that dosing seem normal to you guys?) Some of you might recall a year ago when they prescribed prednisone for Aundrea and everyone was so baffled as to why she wasn't improving. Later, I discovered the pills hidden all over the house. Well, today I stood right beside her and watched her take every one of them. She was a real trooper about it, but then again she is in so much pain that I think she might try anything. How long do you think it will take before we start seeing some relief with the use of the pred? (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 -.. Sorry about the prednisone.. It's such a love it/hate it drug. Are they changing any of her other meds. I'm just conerned that a quick burst of prednisone is not helping the underlaying trend that it seems Aundreas symptoms are getting worse???? Obviously something is going on with her that her current meds are not doing enough to keep under control. I hope im not being too outspoken here, just voicing my opinion, for what its worth )))) What did he say about the crutches?? wont they be too hard on her wrists if shes also having wrist problems.?? Hope she starts to feel better soon, im sure she will on the pred. Hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Hello everyone, > > Well, I called the doctor today to see about getting Aundrea some > crutches and her doc felt it was time to start Aundrea on > Prednisone. I was kind of leary about it, but when I looked back at > her health jounal I could see how everything just really went down > hill last winter and her rheumy is hoping that the pred will stop the > flare in its tracks before it becomes harder to manage. > > So I gave Aundrea her first dose this morning. She is starting on > 20mg a day and will then taper down 5 mg. every 5 days. (Does that > dosing seem normal to you guys?) > > Some of you might recall a year ago when they prescribed prednisone > for Aundrea and everyone was so baffled as to why she wasn't > improving. Later, I discovered the pills hidden all over the house. > Well, today I stood right beside her and watched her take every one > of them. She was a real trooper about it, but then again she is in > so much pain that I think she might try anything. > > How long do you think it will take before we start seeing some relief > with the use of the pred? > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Thanks for all of your comments regarding the pred as well as mentioning your concerns. I always learn so much from everyone on this list. I recognize what you guys are saying about not changing the DMARDS. Aundrea has been on the Plaquenil since last March. After a couple of months she started doing wonderful. Her last flare that put her in bed for a week was this past July. The problem seems to be that this is the time of year (at least according to how things went last year) that things start to spin out of control. Apparently, that is true for a lot of the systemics. I guess from what I can understand the rheumy wants to try this tapered dose of pred and if it doesn't keep things at bay then she will consider other drugs. We have only been going to this doctor since last March and thats when she put Aundrea on the Plaquenil. Until this month she was doing great. Tell me what you guys have seen as the normal course of events that your doctors have done with meds during a flare. Meanwhile, Aundrea has just gone to lay down for another nap and I am hoping to see some real improvement when she wakes up! - P.S. you are right about the crutches being a problem with her wrists. But until today it was the right knee that was causing the most pain and I thought if she could get away with not bearing as much weight on it that it might help. I stopped by Aundrea's primary doctors office and he gave me a script for the crutches. I guess it can't hurt to try them. (Drea age 9 systemic) -- In , " hburger64 " <hburger64@h...> wrote: > > -.. > > Sorry about the prednisone.. It's such a love it/hate it drug. Are > they changing any of her other meds. I'm just conerned that a quick > burst of prednisone is not helping the underlaying trend that it > seems Aundreas symptoms are getting worse???? Obviously something is > going on with her that her current meds are not doing enough to keep > under control. > > I hope im not being too outspoken here, just voicing my opinion, for > what its worth )))) > > What did he say about the crutches?? wont they be too hard on her > wrists if shes also having wrist problems.?? > > Hope she starts to feel better soon, im sure she will on the pred. > > Hugs Helen and (7,systemic) > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > Hello everyone, > > > > Well, I called the doctor today to see about getting Aundrea some > > crutches and her doc felt it was time to start Aundrea on > > Prednisone. I was kind of leary about it, but when I looked back > at > > her health jounal I could see how everything just really went down > > hill last winter and her rheumy is hoping that the pred will stop > the > > flare in its tracks before it becomes harder to manage. > > > > So I gave Aundrea her first dose this morning. She is starting on > > 20mg a day and will then taper down 5 mg. every 5 days. (Does that > > dosing seem normal to you guys?) > > > > Some of you might recall a year ago when they prescribed > prednisone > > for Aundrea and everyone was so baffled as to why she wasn't > > improving. Later, I discovered the pills hidden all over the > house. > > Well, today I stood right beside her and watched her take every > one > > of them. She was a real trooper about it, but then again she is > in > > so much pain that I think she might try anything. > > > > How long do you think it will take before we start seeing some > relief > > with the use of the pred? > > > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 -Hi ... i hope Aundrea starts to feel the benefit of the prednisone soon. hopefully she will wake from her nap and feel a little better. Its sad to read of so many of the systemic kids struggling now, hurts my heart. also had a great summer, he could sleep in when he wanted, sometimes as much as 14-15 hours. He was in the pool everyday, which i think was great exercise for his joints. We went 3 months with no, or hardly any symptoms.One rhuemy visit i actually had NO journal to take because nothing happened! I was begnning to think that we had this thing beat, although all be it, though medication. seems to flare now everytime we try and lower his prednisone. When he was 1st put on mtx and prednisone ( 1st week in feb) he was at 10mg of mtx and 10mg of prednisone....he has flared 4 times since then, each time because of a prednisone taper..the pred is always put back up, although not as high as it was and the mtx was increased. We have gone from 10 to 15 to 17.5 to 20mg of MTX. His prednisone is currently at 3mg... We were down to 5mg of pred in March, but as you can see we have only been able to get rid of 2mg in 7 months. The object, I believe, is to up the pred back until the increase in MTX helps the symptoms and the pred can start to be tapered again. Its a vicious cirlce. As Nicks rhuemy says, we are always chasing our tails.... Nick is now maxed out on MTX ( according to body weight). Im sure our next step will be enbrel, but we are not there yet. Theres still hope that this last increase in MTX will be " the one " and we can continue the pred taper next month ( ok, im kidding myself here, but still). I still think Nick has a milder case than a lot of the kids on the list... I cant help but think of poor Robbie, on such high doses of prednisone and STILL having the fevers. Even with Nicks mild case, I see just how sick he becomes and I can only imagine just how much sicker the others must get. This disease suxs. So I guess my long winded ( sorry) answer to your question is, that anytime Nick flares, his prednisone is increased back to where he was doing ok with it and his DMARD is increased at the same time. We wait to give the DMARD a chance to start to work and then begin the tapering cycle again. Make sense???? IM not sure it does to me!! LOL Hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Thanks for all of your comments regarding the pred as well as > mentioning your concerns. I always learn so much from everyone on > this list. > > I recognize what you guys are saying about not changing the DMARDS. > > Aundrea has been on the Plaquenil since last March. After a couple > of months she started doing wonderful. Her last flare that put her > in bed for a week was this past July. The problem seems to be that > this is the time of year (at least according to how things went last > year) that things start to spin out of control. Apparently, that is > true for a lot of the systemics. > > I guess from what I can understand the rheumy wants to try this > tapered dose of pred and if it doesn't keep things at bay then she > will consider other drugs. > > We have only been going to this doctor since last March and thats > when she put Aundrea on the Plaquenil. Until this month she was > doing great. > > Tell me what you guys have seen as the normal course of events that > your doctors have done with meds during a flare. > > Meanwhile, Aundrea has just gone to lay down for another nap and I am > hoping to see some real improvement when she wakes up! > - > P.S. you are right about the crutches being a problem with her > wrists. But until today it was the right knee that was causing the > most pain and I thought if she could get away with not bearing as > much weight on it that it might help. I stopped by Aundrea's primary > doctors office and he gave me a script for the crutches. I guess it > can't hurt to try them. > > (Drea age 9 systemic) > -- In , " hburger64 " <hburger64@h...> wrote: > > > > -.. > > > > Sorry about the prednisone.. It's such a love it/hate it drug. Are > > they changing any of her other meds. I'm just conerned that a quick > > burst of prednisone is not helping the underlaying trend that it > > seems Aundreas symptoms are getting worse???? Obviously something > is > > going on with her that her current meds are not doing enough to > keep > > under control. > > > > I hope im not being too outspoken here, just voicing my opinion, > for > > what its worth )))) > > > > What did he say about the crutches?? wont they be too hard on her > > wrists if shes also having wrist problems.?? > > > > Hope she starts to feel better soon, im sure she will on the pred. > > > > Hugs Helen and (7,systemic) > > > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Hello everyone, > > > > > > Well, I called the doctor today to see about getting Aundrea some > > > crutches and her doc felt it was time to start Aundrea on > > > Prednisone. I was kind of leary about it, but when I looked back > > at > > > her health jounal I could see how everything just really went > down > > > hill last winter and her rheumy is hoping that the pred will stop > > the > > > flare in its tracks before it becomes harder to manage. > > > > > > So I gave Aundrea her first dose this morning. She is starting > on > > > 20mg a day and will then taper down 5 mg. every 5 days. (Does > that > > > dosing seem normal to you guys?) > > > > > > Some of you might recall a year ago when they prescribed > > prednisone > > > for Aundrea and everyone was so baffled as to why she wasn't > > > improving. Later, I discovered the pills hidden all over the > > house. > > > Well, today I stood right beside her and watched her take every > > one > > > of them. She was a real trooper about it, but then again she is > > in > > > so much pain that I think she might try anything. > > > > > > How long do you think it will take before we start seeing some > > relief > > > with the use of the pred? > > > > > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 -- Actually, Helen you made a lot of sense. I guess when I compare Aundrea to the other kids on this list, I also come away thinking that I guess were doing o.k. as far as how challenging it could be. But, I definately understand what your saying about upping the DMARD and then making the efforts to decrease the pred since it just masks the symptoms. Aundrea is on 200 mg. of Plaquenil daily. I think that might be the maximum dose that they give to kids. I wonder what drug we would be looking at next? I think said that n is on enbrel but from what I can tell on the list lots of kids are taking Methotrexate. You know what kind of has me worried is that we are going into flu season and doesn't pred decrease your immune system. Have you found that Nick is getting more illnesses since he has been on the steroids? Makes me wish I could home-school. It sounds like Nick and Aundrea enjoyed a similar summer. She played softball, swam every day and got plenty of rest. When we saw the rheumy in Sept. it was all smiles as to how great everything was. And like you I was able to leave the health journal behind! Even got me thinking that we should be getting ready to take her off the Plaquenil. But you know you read that some kids do actually outgrow this dreadful disease so I thought she might have been one of the lucky ones. I really do appreciate your taking the time to remind me of Nicks history and how is year has gone. It kind of reassured me that I am doing the right thing with Aundrea. Thanks, (Drea age 9 systemic) - In , " hburger64 " <hburger64@h...> wrote: > > -Hi ... > > i hope Aundrea starts to feel the benefit of the prednisone soon. > hopefully she will wake from her nap and feel a little better. Its > sad to read of so many of the systemic kids struggling now, hurts my > heart. > > also had a great summer, he could sleep in when he wanted, > sometimes as much as 14-15 hours. He was in the pool everyday, which > i think was great exercise for his joints. We went 3 months with no, > or hardly any symptoms.One rhuemy visit i actually had NO journal to > take because nothing happened! I was begnning to think that we had > this thing beat, although all be it, though medication. > seems to flare now everytime we try and lower his > prednisone. When he was 1st put on mtx and prednisone ( 1st week in > feb) he was at 10mg of mtx and 10mg of prednisone....he has flared 4 > times since then, each time because of a prednisone taper..the pred > is always put back up, although not as high as it was and the mtx > was increased. > We have gone from 10 to 15 to 17.5 to 20mg of MTX. His prednisone > is currently at 3mg... We were down to 5mg of pred in March, but as > you can see we have only been able to get rid of 2mg in 7 months. > The object, I believe, is to up the pred back until the increase in > MTX helps the symptoms and the pred can start to be tapered again. > Its a vicious cirlce. As Nicks rhuemy says, we are always chasing > our tails.... > > Nick is now maxed out on MTX ( according to body weight). Im sure > our next step will be enbrel, but we are not there yet. Theres still > hope that this last increase in MTX will be " the one " and we can > continue the pred taper next month ( ok, im kidding myself here, but > still). > > I still think Nick has a milder case than a lot of the kids on the > list... I cant help but think of poor Robbie, on such high doses of > prednisone and STILL having the fevers. Even with Nicks mild case, I > see just how sick he becomes and I can only imagine just how much > sicker the others must get. This disease suxs. > > So I guess my long winded ( sorry) answer to your question is, that > anytime Nick flares, his prednisone is increased back to where he > was doing ok with it and his DMARD is increased at the same time. We > wait to give the DMARD a chance to start to work and then begin the > tapering cycle again. > > Make sense???? IM not sure it does to me!! LOL > > Hugs Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > Thanks for all of your comments regarding the pred as well as > > mentioning your concerns. I always learn so much from everyone on > > this list. > > > > I recognize what you guys are saying about not changing the DMARDS. > > > > Aundrea has been on the Plaquenil since last March. After a > couple > > of months she started doing wonderful. Her last flare that put > her > > in bed for a week was this past July. The problem seems to be > that > > this is the time of year (at least according to how things went > last > > year) that things start to spin out of control. Apparently, that > is > > true for a lot of the systemics. > > > > I guess from what I can understand the rheumy wants to try this > > tapered dose of pred and if it doesn't keep things at bay then she > > will consider other drugs. > > > > We have only been going to this doctor since last March and thats > > when she put Aundrea on the Plaquenil. Until this month she was > > doing great. > > > > Tell me what you guys have seen as the normal course of events > that > > your doctors have done with meds during a flare. > > > > Meanwhile, Aundrea has just gone to lay down for another nap and I > am > > hoping to see some real improvement when she wakes up! > > - > > P.S. you are right about the crutches being a problem with her > > wrists. But until today it was the right knee that was causing > the > > most pain and I thought if she could get away with not bearing as > > much weight on it that it might help. I stopped by Aundrea's > primary > > doctors office and he gave me a script for the crutches. I guess > it > > can't hurt to try them. > > > > (Drea age 9 systemic) > > -- In , " hburger64 " <hburger64@h...> wrote: > > > > > > -.. > > > > > > Sorry about the prednisone.. It's such a love it/hate it drug. > Are > > > they changing any of her other meds. I'm just conerned that a > quick > > > burst of prednisone is not helping the underlaying trend that it > > > seems Aundreas symptoms are getting worse???? Obviously > something > > is > > > going on with her that her current meds are not doing enough to > > keep > > > under control. > > > > > > I hope im not being too outspoken here, just voicing my opinion, > > for > > > what its worth )))) > > > > > > What did he say about the crutches?? wont they be too hard on > her > > > wrists if shes also having wrist problems.?? > > > > > > Hope she starts to feel better soon, im sure she will on the > pred. > > > > > > Hugs Helen and (7,systemic) > > > > > > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > > > Hello everyone, > > > > > > > > Well, I called the doctor today to see about getting Aundrea > some > > > > crutches and her doc felt it was time to start Aundrea on > > > > Prednisone. I was kind of leary about it, but when I looked > back > > > at > > > > her health jounal I could see how everything just really went > > down > > > > hill last winter and her rheumy is hoping that the pred will > stop > > > the > > > > flare in its tracks before it becomes harder to manage. > > > > > > > > So I gave Aundrea her first dose this morning. She is > starting > > on > > > > 20mg a day and will then taper down 5 mg. every 5 days. (Does > > that > > > > dosing seem normal to you guys?) > > > > > > > > Some of you might recall a year ago when they prescribed > > > prednisone > > > > for Aundrea and everyone was so baffled as to why she wasn't > > > > improving. Later, I discovered the pills hidden all over the > > > house. > > > > Well, today I stood right beside her and watched her take > every > > > one > > > > of them. She was a real trooper about it, but then again she > is > > > in > > > > so much pain that I think she might try anything. > > > > > > > > How long do you think it will take before we start seeing some > > > relief > > > > with the use of the pred? > > > > > > > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 -... You asked if Nick has been sicker since being on the pred and I actually have to say hes been heathier, if that makes sense. Im talking about your typical garden variety childhood sicknesses... colds, virus' etc. He had a couple of bouts of strep last spring, but have not had anything since. Until this latest flare and the sinus infection, hives etc... We REALLY push hand washing and using purell and so far soo good... How is Aundrea this morning??? I hope better.. hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > -- > Actually, Helen you made a lot of sense. I guess when I compare > Aundrea to the other kids on this list, I also come away thinking > that I guess were doing o.k. as far as how challenging it could be. > > But, I definately understand what your saying about upping the DMARD > and then making the efforts to decrease the pred since it just masks > the symptoms. > > Aundrea is on 200 mg. of Plaquenil daily. I think that might be the > maximum dose that they give to kids. I wonder what drug we would be > looking at next? I think said that n is on enbrel but > from what I can tell on the list lots of kids are taking Methotrexate. > > You know what kind of has me worried is that we are going into flu > season and doesn't pred decrease your immune system. Have you found > that Nick is getting more illnesses since he has been on the steroids? > > Makes me wish I could home-school. It sounds like Nick and Aundrea > enjoyed a similar summer. She played softball, swam every day and got > plenty of rest. When we saw the rheumy in Sept. it was all smiles as > to how great everything was. And like you I was able to leave the > health journal behind! Even got me thinking that we should be > getting ready to take her off the Plaquenil. But you know you read > that some kids do actually outgrow this dreadful disease so I thought > she might have been one of the lucky ones. > > I really do appreciate your taking the time to remind me of Nicks > history and how is year has gone. It kind of reassured me that I am > doing the right thing with Aundrea. > > Thanks, > > (Drea age 9 systemic) > > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > -Hi ... > > > > i hope Aundrea starts to feel the benefit of the prednisone soon. > > hopefully she will wake from her nap and feel a little better. Its > > sad to read of so many of the systemic kids struggling now, hurts > my > > heart. > > > > also had a great summer, he could sleep in when he wanted, > > sometimes as much as 14-15 hours. He was in the pool everyday, > which > > i think was great exercise for his joints. We went 3 months with > no, > > or hardly any symptoms.One rhuemy visit i actually had NO journal > to > > take because nothing happened! I was begnning to think that we had > > this thing beat, although all be it, though medication. > > seems to flare now everytime we try and lower his > > prednisone. When he was 1st put on mtx and prednisone ( 1st week in > > feb) he was at 10mg of mtx and 10mg of prednisone....he has flared > 4 > > times since then, each time because of a prednisone taper..the pred > > is always put back up, although not as high as it was and the mtx > > was increased. > > We have gone from 10 to 15 to 17.5 to 20mg of MTX. His prednisone > > is currently at 3mg... We were down to 5mg of pred in March, but as > > you can see we have only been able to get rid of 2mg in 7 months. > > The object, I believe, is to up the pred back until the increase in > > MTX helps the symptoms and the pred can start to be tapered again. > > Its a vicious cirlce. As Nicks rhuemy says, we are always chasing > > our tails.... > > > > Nick is now maxed out on MTX ( according to body weight). Im sure > > our next step will be enbrel, but we are not there yet. Theres > still > > hope that this last increase in MTX will be " the one " and we can > > continue the pred taper next month ( ok, im kidding myself here, > but > > still). > > > > I still think Nick has a milder case than a lot of the kids on the > > list... I cant help but think of poor Robbie, on such high doses of > > prednisone and STILL having the fevers. Even with Nicks mild case, > I > > see just how sick he becomes and I can only imagine just how much > > sicker the others must get. This disease suxs. > > > > So I guess my long winded ( sorry) answer to your question is, that > > anytime Nick flares, his prednisone is increased back to where he > > was doing ok with it and his DMARD is increased at the same time. > We > > wait to give the DMARD a chance to start to work and then begin the > > tapering cycle again. > > > > Make sense???? IM not sure it does to me!! LOL > > > > Hugs Helen and (7,systemic) > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Thanks for all of your comments regarding the pred as well as > > > mentioning your concerns. I always learn so much from everyone > on > > > this list. > > > > > > I recognize what you guys are saying about not changing the > DMARDS. > > > > > > Aundrea has been on the Plaquenil since last March. After a > > couple > > > of months she started doing wonderful. Her last flare that put > > her > > > in bed for a week was this past July. The problem seems to be > > that > > > this is the time of year (at least according to how things went > > last > > > year) that things start to spin out of control. Apparently, that > > is > > > true for a lot of the systemics. > > > > > > I guess from what I can understand the rheumy wants to try this > > > tapered dose of pred and if it doesn't keep things at bay then > she > > > will consider other drugs. > > > > > > We have only been going to this doctor since last March and thats > > > when she put Aundrea on the Plaquenil. Until this month she was > > > doing great. > > > > > > Tell me what you guys have seen as the normal course of events > > that > > > your doctors have done with meds during a flare. > > > > > > Meanwhile, Aundrea has just gone to lay down for another nap and > I > > am > > > hoping to see some real improvement when she wakes up! > > > - > > > P.S. you are right about the crutches being a problem with her > > > wrists. But until today it was the right knee that was causing > > the > > > most pain and I thought if she could get away with not bearing as > > > much weight on it that it might help. I stopped by Aundrea's > > primary > > > doctors office and he gave me a script for the crutches. I guess > > it > > > can't hurt to try them. > > > > > > (Drea age 9 systemic) > > > -- In , " hburger64 " <hburger64@h...> > wrote: > > > > > > > > -.. > > > > > > > > Sorry about the prednisone.. It's such a love it/hate it drug. > > Are > > > > they changing any of her other meds. I'm just conerned that a > > quick > > > > burst of prednisone is not helping the underlaying trend that > it > > > > seems Aundreas symptoms are getting worse???? Obviously > > something > > > is > > > > going on with her that her current meds are not doing enough to > > > keep > > > > under control. > > > > > > > > I hope im not being too outspoken here, just voicing my > opinion, > > > for > > > > what its worth )))) > > > > > > > > What did he say about the crutches?? wont they be too hard on > > her > > > > wrists if shes also having wrist problems.?? > > > > > > > > Hope she starts to feel better soon, im sure she will on the > > pred. > > > > > > > > Hugs Helen and (7,systemic) > > > > > > > > > > > > -- In , " sonia1md " <sonia1md@y...> > wrote: > > > > > > > > > > Hello everyone, > > > > > > > > > > Well, I called the doctor today to see about getting Aundrea > > some > > > > > crutches and her doc felt it was time to start Aundrea on > > > > > Prednisone. I was kind of leary about it, but when I looked > > back > > > > at > > > > > her health jounal I could see how everything just really went > > > down > > > > > hill last winter and her rheumy is hoping that the pred will > > stop > > > > the > > > > > flare in its tracks before it becomes harder to manage. > > > > > > > > > > So I gave Aundrea her first dose this morning. She is > > starting > > > on > > > > > 20mg a day and will then taper down 5 mg. every 5 days. (Does > > > that > > > > > dosing seem normal to you guys?) > > > > > > > > > > Some of you might recall a year ago when they prescribed > > > > prednisone > > > > > for Aundrea and everyone was so baffled as to why she wasn't > > > > > improving. Later, I discovered the pills hidden all over the > > > > house. > > > > > Well, today I stood right beside her and watched her take > > every > > > > one > > > > > of them. She was a real trooper about it, but then again she > > is > > > > in > > > > > so much pain that I think she might try anything. > > > > > > > > > > How long do you think it will take before we start seeing > some > > > > relief > > > > > with the use of the pred? > > > > > > > > > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Well I can definately see why pred is called the love/hate drug. This morning we loved it. Aundrea woke up as her happy little self. All symptoms of the flare were gone except for the painful right knee. But even the swelling in the knee was gone. I did get her the crutches so that she could use them for walking the long distances to her classroom. Hopefully, by tomorrows third dose she will be free of the knee pain. Seems like the appetite thing kicks in pretty quickly. She is also having major sweats. Its like she is dripping wet and actually have to get a towel to dry her off. But, the quick benefits have certainly been amazing and I am hoping that she will handle the taper o.k. We will drop from 20 to 15mg on day 6. (Aundrea 9 systemic)- -- In , " hburger64 " <hburger64@h...> wrote: > > -... > > You asked if Nick has been sicker since being on the pred and I > actually have to say hes been heathier, if that makes sense. Im > talking about your typical garden variety childhood sicknesses... > colds, virus' etc. He had a couple of bouts of strep last spring, > but have not had anything since. Until this latest flare and the > sinus infection, hives etc... > > We REALLY push hand washing and using purell and so far soo good... > > How is Aundrea this morning??? I hope better.. > > hugs Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > -- > > Actually, Helen you made a lot of sense. I guess when I compare > > Aundrea to the other kids on this list, I also come away thinking > > that I guess were doing o.k. as far as how challenging it could be. > > > > But, I definately understand what your saying about upping the > DMARD > > and then making the efforts to decrease the pred since it just > masks > > the symptoms. > > > > Aundrea is on 200 mg. of Plaquenil daily. I think that might be > the > > maximum dose that they give to kids. I wonder what drug we would > be > > looking at next? I think said that n is on enbrel but > > from what I can tell on the list lots of kids are taking > Methotrexate. > > > > You know what kind of has me worried is that we are going into flu > > season and doesn't pred decrease your immune system. Have you > found > > that Nick is getting more illnesses since he has been on the > steroids? > > > > Makes me wish I could home-school. It sounds like Nick and > Aundrea > > enjoyed a similar summer. She played softball, swam every day and > got > > plenty of rest. When we saw the rheumy in Sept. it was all smiles > as > > to how great everything was. And like you I was able to leave the > > health journal behind! Even got me thinking that we should be > > getting ready to take her off the Plaquenil. But you know you read > > that some kids do actually outgrow this dreadful disease so I > thought > > she might have been one of the lucky ones. > > > > I really do appreciate your taking the time to remind me of Nicks > > history and how is year has gone. It kind of reassured me that I > am > > doing the right thing with Aundrea. > > > > Thanks, > > > > (Drea age 9 systemic) > > > > > > > > - In , " hburger64 " <hburger64@h...> wrote: > > > > > > -Hi ... > > > > > > i hope Aundrea starts to feel the benefit of the prednisone > soon. > > > hopefully she will wake from her nap and feel a little better. > Its > > > sad to read of so many of the systemic kids struggling now, > hurts > > my > > > heart. > > > > > > also had a great summer, he could sleep in when he > wanted, > > > sometimes as much as 14-15 hours. He was in the pool everyday, > > which > > > i think was great exercise for his joints. We went 3 months with > > no, > > > or hardly any symptoms.One rhuemy visit i actually had NO > journal > > to > > > take because nothing happened! I was begnning to think that we > had > > > this thing beat, although all be it, though medication. > > > seems to flare now everytime we try and lower his > > > prednisone. When he was 1st put on mtx and prednisone ( 1st week > in > > > feb) he was at 10mg of mtx and 10mg of prednisone....he has > flared > > 4 > > > times since then, each time because of a prednisone taper..the > pred > > > is always put back up, although not as high as it was and the > mtx > > > was increased. > > > We have gone from 10 to 15 to 17.5 to 20mg of MTX. His > prednisone > > > is currently at 3mg... We were down to 5mg of pred in March, but > as > > > you can see we have only been able to get rid of 2mg in 7 > months. > > > The object, I believe, is to up the pred back until the increase > in > > > MTX helps the symptoms and the pred can start to be tapered > again. > > > Its a vicious cirlce. As Nicks rhuemy says, we are always > chasing > > > our tails.... > > > > > > Nick is now maxed out on MTX ( according to body weight). Im > sure > > > our next step will be enbrel, but we are not there yet. Theres > > still > > > hope that this last increase in MTX will be " the one " and we can > > > continue the pred taper next month ( ok, im kidding myself here, > > but > > > still). > > > > > > I still think Nick has a milder case than a lot of the kids on > the > > > list... I cant help but think of poor Robbie, on such high doses > of > > > prednisone and STILL having the fevers. Even with Nicks mild > case, > > I > > > see just how sick he becomes and I can only imagine just how > much > > > sicker the others must get. This disease suxs. > > > > > > So I guess my long winded ( sorry) answer to your question is, > that > > > anytime Nick flares, his prednisone is increased back to where > he > > > was doing ok with it and his DMARD is increased at the same > time. > > We > > > wait to give the DMARD a chance to start to work and then begin > the > > > tapering cycle again. > > > > > > Make sense???? IM not sure it does to me!! LOL > > > > > > Hugs Helen and (7,systemic) > > > > > > -- In , " sonia1md " <sonia1md@y...> > wrote: > > > > > > > > Thanks for all of your comments regarding the pred as well as > > > > mentioning your concerns. I always learn so much from > everyone > > on > > > > this list. > > > > > > > > I recognize what you guys are saying about not changing the > > DMARDS. > > > > > > > > Aundrea has been on the Plaquenil since last March. After a > > > couple > > > > of months she started doing wonderful. Her last flare that > put > > > her > > > > in bed for a week was this past July. The problem seems to be > > > that > > > > this is the time of year (at least according to how things > went > > > last > > > > year) that things start to spin out of control. Apparently, > that > > > is > > > > true for a lot of the systemics. > > > > > > > > I guess from what I can understand the rheumy wants to try > this > > > > tapered dose of pred and if it doesn't keep things at bay then > > she > > > > will consider other drugs. > > > > > > > > We have only been going to this doctor since last March and > thats > > > > when she put Aundrea on the Plaquenil. Until this month she > was > > > > doing great. > > > > > > > > Tell me what you guys have seen as the normal course of events > > > that > > > > your doctors have done with meds during a flare. > > > > > > > > Meanwhile, Aundrea has just gone to lay down for another nap > and > > I > > > am > > > > hoping to see some real improvement when she wakes up! > > > > - > > > > P.S. you are right about the crutches being a problem with her > > > > wrists. But until today it was the right knee that was > causing > > > the > > > > most pain and I thought if she could get away with not bearing > as > > > > much weight on it that it might help. I stopped by Aundrea's > > > primary > > > > doctors office and he gave me a script for the crutches. I > guess > > > it > > > > can't hurt to try them. > > > > > > > > (Drea age 9 systemic) > > > > -- In , " hburger64 " <hburger64@h...> > > wrote: > > > > > > > > > > -.. > > > > > > > > > > Sorry about the prednisone.. It's such a love it/hate it > drug. > > > Are > > > > > they changing any of her other meds. I'm just conerned that > a > > > quick > > > > > burst of prednisone is not helping the underlaying trend > that > > it > > > > > seems Aundreas symptoms are getting worse???? Obviously > > > something > > > > is > > > > > going on with her that her current meds are not doing enough > to > > > > keep > > > > > under control. > > > > > > > > > > I hope im not being too outspoken here, just voicing my > > opinion, > > > > for > > > > > what its worth )))) > > > > > > > > > > What did he say about the crutches?? wont they be too hard > on > > > her > > > > > wrists if shes also having wrist problems.?? > > > > > > > > > > Hope she starts to feel better soon, im sure she will on the > > > pred. > > > > > > > > > > Hugs Helen and (7,systemic) > > > > > > > > > > > > > > > -- In , " sonia1md " <sonia1md@y...> > > wrote: > > > > > > > > > > > > Hello everyone, > > > > > > > > > > > > Well, I called the doctor today to see about getting > Aundrea > > > some > > > > > > crutches and her doc felt it was time to start Aundrea on > > > > > > Prednisone. I was kind of leary about it, but when I > looked > > > back > > > > > at > > > > > > her health jounal I could see how everything just really > went > > > > down > > > > > > hill last winter and her rheumy is hoping that the pred > will > > > stop > > > > > the > > > > > > flare in its tracks before it becomes harder to manage. > > > > > > > > > > > > So I gave Aundrea her first dose this morning. She is > > > starting > > > > on > > > > > > 20mg a day and will then taper down 5 mg. every 5 days. > (Does > > > > that > > > > > > dosing seem normal to you guys?) > > > > > > > > > > > > Some of you might recall a year ago when they prescribed > > > > > prednisone > > > > > > for Aundrea and everyone was so baffled as to why she > wasn't > > > > > > improving. Later, I discovered the pills hidden all over > the > > > > > house. > > > > > > Well, today I stood right beside her and watched her take > > > every > > > > > one > > > > > > of them. She was a real trooper about it, but then again > she > > > is > > > > > in > > > > > > so much pain that I think she might try anything. > > > > > > > > > > > > How long do you think it will take before we start seeing > > some > > > > > relief > > > > > > with the use of the pred? > > > > > > > > > > > > (Aundrea age 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Hi Becki, I see what you mean about the hunger. She seems to constantly be asking for food. I am trying my best to give out some nutritious snacks. She also likes the sugar free popscicles. She did have a pimple like rash that broke out on her leg along with a couple of spots on her arm and neck. It doesn't seem to severe so I guess I will just keep an eye on it for now. She is feeling good everywhere right now except the right knee. Still limping or using the crutches, but tomorrow will be day 3 of pred so maybe we will see more improvement then. (Drea 9 systemic)- -- In , Arthurnator@w... wrote: > Hi , > I don't recall the sweats with but remember all to well the hunger.He > would cry and scream for food,sneak food out of the fridge or just stand there > and shove stuff in his mouth as fast as he could. > Keep an abudance of fruit in the house for snack time especialy those high in > water content.The water will make Aundrea feel full and they have very few > calories. > As the dose gets lower so will the appetite and your grocery bill,lol > Hugs > Becki and 6 systemic > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 HI Georgina, It was so nice to hear from you. I think of you often, especially when Aundrea is in a flare and I can come to this list and gather such wonderful knowledge and support from so many others that have been on this road of jra much longer than me. I appreciate all the work that you do to keep this list going as well as keeping us educated with new articles. Yesterday was day 4 for Aundrea on prednisone 20mg. She came home from school feeling wonderful, almost giddy. She had no joint pain and was running around playing with her girlfriend and so very happy! Tomorrow we will taper to 15 and hopefully it will go smoothly. I did think about the option of some type of injection to her knee but I think it could be a little early yet for that. I know n has had to do that with her wrists as well as others on the list. I was kind of concerned about her using the crutches and not getting any movement to her joint, but it only lasted for a few days and like you said it was starting to hurt her wrists. But, the steroids kicked in and did their job so for now the crutches are tucked in the back of the closet! :-) My Aundrea weighs nearly as much as your Josh. She is 81 lbs, but she is also tall at 4 10. My kids are somewhat like giants. So many kids with jra seem smaller in stature and struggle with weight gain but we have the opposite problems here as far as growth. In fact my 12 year old stands about 5 7 and has developed Osgood Schlaters disease. Its when the bone grows faster than the muscle and so the muscle is being pulled away from the bone. It should resolve itself whenever the growth spurt slows down. I showed Aundrea this list for the first time this week. She liked that so many people enjoyed her letter. She was super impressed that shared her letter with a reporter and that others suggested she submit it to the jra newsletter. She was funny. She looked at me and said " I just can't stop smiling, it makes me feel so good that they liked my letter and that they thought it would help other kids that have jra " . I'd better get going as I am sure I have rambled long enough. I hope things go well for Josh with this current round of pred and that once again he will be eventually able to taper. God Bless, (Drea 9 systemic) > > > Hi , > > I don't recall the sweats with but remember all to well the hunger.He > > would cry and scream for food,sneak food out of the fridge or just stand there > > and shove stuff in his mouth as fast as he could. > > Keep an abudance of fruit in the house for snack time especialy those high in > > water content.The water will make Aundrea feel full and they have very few > > calories. > > As the dose gets lower so will the appetite and your grocery bill,lol > > Hugs > > Becki and 6 systemic 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.