Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Great news! I'll keep my fingers crossed that all continues to go well. Diane (, 5, pauci, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Caroline- I swear those ear infections are somehow related. has constant problems with her ears. I've been to the ENT twice this week and have probably been there 8 times in the last two months. And getting tubes didn't help her. I think it's actually worse! Now she has fungus in addition to regular ear infections. Fun, fun, fun! Diane (, 5, pauci, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hello everyone... Caroline saw her rheumatologist on Monday and she told us that you can't even tell she has arthritis! Yeah!!! Plus, her sed rate is down to 10!!!!!! We have started a quick taper of her PM prednisone dosage. She will be off the PM dosage within the next three weeks as long as the MTX is working.. We go back to the ophthalmologist next month and hopefully the pred. taper doesn't affect her eyes... We are so very relieved! Thanks to everyone who has been keeping us in their prayers... Alia and Caroline, age 2, poly & uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Thanks Diane... Me too... The only bad news we got is that she has yet another ear infection. Her pediatrician wants us to think about reputing tubes in her ears this summer.... We're going to wait and see what happens though.... Alia and Caroline, age 2, poly and uveitis Re: Caroline Update Great news! I'll keep my fingers crossed that all continues to go well. Diane (, 5, pauci, iritis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Alia; I am so happy to hear that Caroline is doing so well. Can't wait to meet all of you at AJAO! and Rob 15 Spondy On Wed, 28 Apr 2004 15:44:24 -0500 " Pranke, Alia " <Alia.Pranke@...> writes: Hello everyone... Caroline saw her rheumatologist on Monday and she told us that you can't even tell she has arthritis! Yeah!!! Plus, her sed rate is down to 10!!!!!! We have started a quick taper of her PM prednisone dosage. She will be off the PM dosage within the next three weeks as long as the MTX is working.. We go back to the ophthalmologist next month and hopefully the pred. taper doesn't affect her eyes... We are so very relieved! Thanks to everyone who has been keeping us in their prayers... Alia and Caroline, age 2, poly & uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi Alia, A little late but that realy was great news.I am so happy for you guys.Sounds like the MTX is working and once it starts it takes another 6-8 weeks to get maximum benefits from that dosage.So here's to an even better responce to come. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Hi Alia, Whoo Hoo!!! Nothing better then a smooth pred taper.I hope the rest go as smoothly with nothing more then mayby a little spead bump.No hills allowed. Congradulations. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 FANTASTIC news on Caroline!!! Stacia and Hunter,8,systemic,iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Thanks Stacia! Alia and Caroline, age 2, poly and uveitis Re: Caroline Update FANTASTIC news on Caroline!!! Stacia and Hunter,8,systemic,iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Thanks Becki. That is great to know. We are feeling so fortunate at this moment. Caroline has handled the two tapers this past week and a half excellently. We taper again tomorrow so we are expecting good results again... Alia nad Caroline, age 2, poly and uveitis Re: Re: Caroline Update Hi Alia, A little late but that realy was great news.I am so happy for you guys.Sounds like the MTX is working and once it starts it takes another 6-8 weeks to get maximum benefits from that dosage.So here's to an even better responce to come. Love and Hugs Becki and 5 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Sorry Caroline is in such pain. You are right, too often the drs don't see it. Glad yours did. I hope that the enbrel does the trick for her. Praying that it goes well, Michele (17, pauci & spondy) Caroline Update We saw Caroline's rheumy yesterday. It was a very good and a disappointing appointment all wrapped up into one! The disappointing point was that she was in such extreme pain when we went in. She couldn't move her neck at all and her left ankle was obviously swollen. The good part is that her rheumy actually saw her when she was in pain, which we all know is a rarity! Dr. Akin has confirmed that she now has arthritis in her neck and her left ankle. We once again tossed drug options around and settled on adding Enbrel. Because of all the problems with MTX we are decreasing her dosage to 15/mg weekly and keeping the Zantac. If Zantac doesn't work she will add folic acid next visit. We are also doing a six day Prednisone increase in hopes of offering her some relief. We are upping her prednisone to 30/mg daily for six days and then tapering it again. Dr. Akin is hoping that with Enbrel we can finally get her off the prednisone. We are keeping our fingers crossed. I think that we are all discouraged right now. It feels like we have had no control over this disease since it's onset in January. It is obvious that MTX has failed. The only reason her knee's are better is because of the artiospan injections. I guess I am just sad. I feel like our chances of her growing out of this are dwindling with each new joint... OK. Sorry this was soo long... On the up side. I went to the pharmacy and got her Enbrel filled. We didn't have any problems with insurance and we only have a $15 co-pay! Alia and Caroline, age 2, poly and uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Hi Alia, Mayby the rheumy will allow Caroline to go ahead and start the Enbrel and see her in 4 weeks instead of 2 or bump your appointment up.I just called s rheumy today because his appointment is on the first day of school and we got rezoned.We were able to get his appointment 1 week later. I hope the Enbrel works wonders for Miss C. joints and eyes. Love and Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Hey Becki... Thanks so much. We are going to start the Enbrel this week or next depending on when we can get into the Rheumy. She wants two weeks worth before we see her again. I just tried to make an appointment and we can't get in until the 30th which is four weeks!! I left a message with the nurse so hopefully they will be able to do something... Let's cross our fingers! I heard a lot about those TNF inhibitors at the conference, but the talk was a little over my head! I'm a CPA, so I understand numbers, but the whole medical jargon thing is beyond me! LOL!!! Alia and Caroline, age 2, poly and uveitis Re: Caroline Update Hi Alia, So sorry you are feeling so down.Caroline is a trooper and once again she will amaze you.I pray the Enbrel will do its thing and work swiftly.They are doing studies on TNF inhibitors and iritis/uveitis with very promising hopes.It would be wonderful if the Enbrel got rid of the joint and eye inflimation. Congradulations on getting it so quickly,when does Caroline start? LOve and Hugs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 In a message dated 8/6/04 10:47:28 AM Eastern Daylight Time, Arthurnator@... writes: > They wanted > a doctor or nurse watch me give the shot.I was soo nervous holding a vial > worth close to $200. > Hi Becki: I so understand that feeling of holding such an expensive med in your hands. growth hormone costs approximately 35,000 a year. I am in a panic on delivery day. You know, you wait and wait and when you leave for two minutes to get the kids from school, boom, they deliver. It's just incredible how much medicine can cost! Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Thanks for the tip . I totally did this and it worked great! Alia and Caroline, age 2, poly and uveitis Re: Caroline Update After I put the dilutent into the enrbel stuff i just stick it back in the fridge it will disolve it perfectly and i know im not shaking it. Leave it for an hour and it also cuts down on the foam they area always talking about.. I thought of that all by myself.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Becki - The Enbrel shot went well. The EMLA cream worked for once and we were able to give her both her MTX and Enbrel shots on Saturday. She winced a little, but no bruising this week!! We have dropped her Prednisone back down to 7mg from 30mg so we'll see if the two shots worked shortly! Alia and Caroline, age 2, poly and uveitis Re: Caroline Update Hi Alia, You will do just fine giving the Enbrel. never got any kind of side effects from the Enbrel.Do expect a shot reaction,thats normal and it will stop happening.It will be red,round,raised and mildly to moderately itchy that can last several days.The next shot in a totaly differant area can bring a reaction to the previous shot site.I think went about a month before the reactions then they only lasted a month.Nothing ever since. didn't like the coldness going in so I keep it out for about 10 minuites before giving it to him. The new kits look complicated but they aren't.You won't use the vial adapter at all.Just pop the top off the vial,put the needle on the syringe,wipe off the vial,stick needle in,then put plunger on.Slowely push so you have a constant drip,streaming won't hurt but it will make foamy bubbles that take longer to subside.It usualy takes a little longer then directions say to disolve,sometimes you get a very small,stubborn speck of white but just be patient and keep swirling. Good luck and will be thinking of Miss C tomorrow. Love and HUgs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Dumb question~ But what is EMLA cream? ~e <http://www.geocities.com/ourwebnook> Re: Caroline Update Hi Alia, You will do just fine giving the Enbrel. never got any kind of side effects from the Enbrel.Do expect a shot reaction,thats normal and it will stop happening.It will be red,round,raised and mildly to moderately itchy that can last several days.The next shot in a totaly differant area can bring a reaction to the previous shot site.I think went about a month before the reactions then they only lasted a month.Nothing ever since. didn't like the coldness going in so I keep it out for about 10 minuites before giving it to him. The new kits look complicated but they aren't.You won't use the vial adapter at all.Just pop the top off the vial,put the needle on the syringe,wipe off the vial,stick needle in,then put plunger on.Slowely push so you have a constant drip,streaming won't hurt but it will make foamy bubbles that take longer to subside.It usualy takes a little longer then directions say to disolve,sometimes you get a very small,stubborn speck of white but just be patient and keep swirling. Good luck and will be thinking of Miss C tomorrow. Love and HUgs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 NOT a dumb question!! It's a cream you can put on topically to numb the injection site. It doesn't help with the pain meds, but it takes away the needle pain. Alia and Caroline, age 2, poly and uveitis Re: Caroline Update Hi Alia, You will do just fine giving the Enbrel. never got any kind of side effects from the Enbrel.Do expect a shot reaction,thats normal and it will stop happening.It will be red,round,raised and mildly to moderately itchy that can last several days.The next shot in a totaly differant area can bring a reaction to the previous shot site.I think went about a month before the reactions then they only lasted a month.Nothing ever since. didn't like the coldness going in so I keep it out for about 10 minuites before giving it to him. The new kits look complicated but they aren't.You won't use the vial adapter at all.Just pop the top off the vial,put the needle on the syringe,wipe off the vial,stick needle in,then put plunger on.Slowely push so you have a constant drip,streaming won't hurt but it will make foamy bubbles that take longer to subside.It usualy takes a little longer then directions say to disolve,sometimes you get a very small,stubborn speck of white but just be patient and keep swirling. Good luck and will be thinking of Miss C tomorrow. Love and HUgs Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Thanks Patty! Alia and Caroline, age 2, poly and uveitis Re: Caroline Update Hi Alia: Sorry to hear that Caroline is still having such bad pain and that you are feeling so sad:( I wish we could all come and help you with some TLC. I hope and pray that Enbrel is the miracle medicine for Caroline and gets her pain free ASAP:) Take care. Patty Quote Link to comment Share on other sites More sharing options...
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