Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 Hi Alia, Until the MTX kicks in and starts working it's magic you may have to keep up the split dose of pred or inject the knee which would be better.Let us know what the rheumy says. Hugs Becki and 5systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2004 Report Share Posted March 26, 2004 -Gosh Alia.... How frustating. I know how much it pains you to see Caroline in so much pain all the time. I hope the rheumy calls back ASAP and gives you some answers. Thinking of you... Hugs Helen and (6,systemic) -- In , " Alia Pranke " <ajpranke@j...> wrote: > We started Caroline's new prednisone doasge yesterday. Instead of 1/2 > doesages two times a day we only gave it in the morning. This was > supposed to help with the nigh restlessness, upset stomach, etc, etc. > > This morning she woke up with her right knee blown up again, couldn't > stand much less walk, and screaming in pain! I just am floored by > this disease! We are giving her the same dosage just all at one time! > I'm soo annoyed. She shouldn't have to be in so much pain. I have a > call into her Rhuemy to find out " what next " . Hopefully she will have > an answer. > > Thanks for listening to me vent! > > Alia and Caroline, age 2, pauci and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Hi Alia, I had a feeling that was goint to happen.I don't know if Caroline takes Prednisone or prednisilone but I assume she is on the syrup.Something to consider.When Caroline is back to her cranky self and she stays that way for a week you might consider just trying to take 1 ity,bity mg from the PM dose.If you don't have a 1ml syringe you need to get one.At 15mg am and pm I assume you have the big 5ml one.Let me know what she is taking and I can walk you through it.It's been a while but Val and I used to break out our calculators together and we could taper 1/8 of a mg if need be. always had a hard time if we tried to take his pm dose and add it to his am dose.A VERY slow taper worked better.In a few weeks the MTX should be starting to work and things will get easier. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Thanks Becki... We are back to the split dosage again and she seems to be fine. I guess that taper didn't work! GRRR! Alia and Caroline, age 2, pauci and uveitis > Hi Alia, > Until the MTX kicks in and starts working it's magic you may have to keep up > the split dose of pred or inject the knee which would be better.Let us know > what the rheumy says. > Hugs > Becki and 5systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Thanks Patty. Our Rhuemy called us back and put us back on the split dosage with just a little more in the morning than in the evening. It seemed to work well yesterday because this morning she's up and running around! Yeah! Our rhuemy said that the taper is going to have to go a lot slower than they anticipated. On the up side her sed rate is down to 45!!! Yeah! Alia and Caroline, age 2, pauci and uveitis > In a message dated 3/26/04 12:26:54 PM Eastern Standard Time, > ajpranke@j... writes: > > << > This morning she woke up with her right knee blown up again, couldn't > stand much less walk, and screaming in pain! I just am floored by > this disease! We are giving her the same dosage just all at one time! > I'm soo annoyed. She shouldn't have to be in so much pain. I have a > call into her Rhuemy to find out " what next " . Hopefully she will have > an answer. >> > Hi Alia: > > I hope and pray that the meds will get Caroline's pain under control. Poor > baby and mommy too:( It hurts our hearts to see our children suffer with so > much pain:( > > Here's to a better tomorrow. > > Take care. > Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 Hi Alia, I hope that works out better for Caroline. Trying to find the correct dosage, the minimal amount of steroids necessary to properly control the symptoms, often requires a lot of adjustment and fine tuning. There's a very delicate balance, which varies from one person to the next. I'm glad to hear that Caroline's SED rate has decreased. That's a positive step in the right direction. I hope things get even better soon. Aloha, Georgina Alia Pranke wrote: > Thanks Patty. Our Rhuemy called us back and put us back on the split > dosage with just a little more in the morning than in the evening. > It seemed to work well yesterday because this morning she's up and > running around! Yeah! Our rhuemy said that the taper is going to > have to go a lot slower than they anticipated. On the up side her > sed rate is down to 45!!! Yeah! > > Alia and Caroline, age 2, pauci and uveitis > > >>In a message dated 3/26/04 12:26:54 PM Eastern Standard Time, >>ajpranke@j... writes: >> >><< >> This morning she woke up with her right knee blown up again, > > couldn't > >> stand much less walk, and screaming in pain! I just am floored by >> this disease! We are giving her the same dosage just all at one > > time! > >> I'm soo annoyed. She shouldn't have to be in so much pain. I have > > a > >> call into her Rhuemy to find out " what next " . Hopefully she will > > have > >> an answer. >> >>Hi Alia: >> >>I hope and pray that the meds will get Caroline's pain under > > control. Poor > >>baby and mommy too:( It hurts our hearts to see our children > > suffer with so > >>much pain:( >> >>Here's to a better tomorrow. >> >>Take care. >>Patty > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hey Becki. I am soo far behind on posts! Sorry about that! It's tax season after all and I am swamped! Anyways - Caroline is on Prednisolone the liguid. We do have both sizes of syringes. We started 4 Ml of Zantac this week and as of last night it seems to be helping. This is the first time in 3 WEEKS she has slept through the night!! WHOO HOO!!We have incresed her pred and her MTX in hopes of getting a grip on this. We don't see our rhuemy for another 4 weeks so I am sure she isn't going to do any tapering until then. Bummer! If she doesn't go for it then I would love to have you help us! The sooner she's off this crap the better! Alia and Caroline, age 2, pauci and uveitis > Hi Alia, > I had a feeling that was goint to happen.I don't know if Caroline takes > Prednisone or prednisilone but I assume she is on the syrup.Something to > consider.When Caroline is back to her cranky self and she stays that way for a week you > might consider just trying to take 1 ity,bity mg from the PM dose.If you don't > have a 1ml syringe you need to get one.At 15mg am and pm I assume you have > the big 5ml one.Let me know what she is taking and I can walk you through > it.It's been a while but Val and I used to break out our calculators together and we > could taper 1/8 of a mg if need be. always had a hard time if we tried > to take his pm dose and add it to his am dose.A VERY slow taper worked > better.In a few weeks the MTX should be starting to work and things will get easier. > Love and Hugs > Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Thanks Georgina... > > > >>In a message dated 3/26/04 12:26:54 PM Eastern Standard Time, > >>ajpranke@j... writes: > >> > >><< > >> This morning she woke up with her right knee blown up again, > > > > couldn't > > > >> stand much less walk, and screaming in pain! I just am floored by > >> this disease! We are giving her the same dosage just all at one > > > > time! > > > >> I'm soo annoyed. She shouldn't have to be in so much pain. I have > > > > a > > > >> call into her Rhuemy to find out " what next " . Hopefully she will > > > > have > > > >> an answer. >> > >>Hi Alia: > >> > >>I hope and pray that the meds will get Caroline's pain under > > > > control. Poor > > > >>baby and mommy too:( It hurts our hearts to see our children > > > > suffer with so > > > >>much pain:( > >> > >>Here's to a better tomorrow. > >> > >>Take care. > >>Patty > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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