Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Sorry to hear about Aundrea's flare. Hopefully the steroids will quickly help and she can get off soon. Michele ( 17, pauci & spondy) flaring again Well the first pred boost didn't do the trick. As predicted Aundrea started in with another flare after being off of the steroids for 6 days. She is having wrist, knee, ankle pain and the rash is more intense than usual. She also has a severe sorethroat and swollen lymph nodes. I called the rheumy yesterday. They decided to put her back on the steroids. Starting at just 10 mg this time but doing the slower taper. Thanks to you guys I was able to question the doc about dropping her from 5mg to 0. She said some kids do fine with that??? Anyway drea will now go on 10 for 1 week then 7 then 5 and then drop by 1 mg each week thereafter. They moved our appointment up so now she will get seen the end of January and they plan to discuss other treatment options. They believe the Plaquenil alone is no longer doing the trick. Methotrexate was mentioned. I am hoping that the steroids will kick in soon. This flare seems worse than the one she had before the last steroid boost. We have our church christmas play on Sunday and Aundrea has a leading role. I sure hope she is feeling better by then. P.S. I did get some pictures yesterday of Aundreas rash. I thought it looks just like the picutures of Nicks rash. I am technoligically challenged but I will try and figure out how to post them. (aundrea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -.. I think you need to call the rheumy 1st thing in the morning and insist that they SEE Aundrea tomorrrow. This doctor NEEDS to see her in a flare to fully understand whats going on. I have to ask about the rash on her face, what does it look like??? is it butterfly shaped?? have they tested her for lupus???? I'm so sorry that her day went from bad to worse. I hope you get some answers tomorrow and some relief for Drea. Hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Well things got worse for Aundrea as the day went on. She came home > from school early due to the sorethroat pain and as evening came the > rash returned on her face and chest and the joint pain has returned > to her wrists, knees and ankles. Her lymph nodes in her neck are > swollen. Her cheeks are beat red and you would just swear that she > has a fever, yet it is normal? > > Basically the same thing happened with the last time we tried to > taper. One week off the pred and everything just comes back. > > I guess we will see how things are in the morning. I have a week to > go until she sees the rheumy. I kind of hate to make even more med > changes with her not seeing the rheumy. As you guys know, this > rheumy has never even seen her in a flare and all of our med changes > have just been made by phone. > > Do you think I should just hold out til next Tuesday? > > (drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Helen, The rash on her face looks like what would happen if your child were outdoors for awhile in the cold. Her cheeks are just BRIGHT red. I took some more pictures of her with this rash. Generally she just gets splotches on her cheeks, forehead, neck or chest. Her eyes were also bloodshot again tonight which tends to coincide with the joint pain. It looks like Aundrea will be home from school tomorrow. I will get our camcorder out and see if I can figure out how to take a picture of this rash and post it on the site. They told me that they tested her for lupus when she was first sick and that she was negative. The rheumy is only in the hospital on Tuesdays. I don't know where she is on the other days. I will call tomorrow and find out what they say. But what if they just call back and tell me to put her back on pred or to increase the mtx. I mean that has been our pattern since November. Don't you think that they should either see her early but if not, do I let them AGAIN change meds without seeing her?-- - In , " hburger64 " <hburger64@h...> wrote: > > -.. > > I think you need to call the rheumy 1st thing in the morning and > insist that they SEE Aundrea tomorrrow. This doctor NEEDS to see her > in a flare to fully understand whats going on. > > I have to ask about the rash on her face, what does it look like??? > is it butterfly shaped?? have they tested her for lupus???? > > I'm so sorry that her day went from bad to worse. I hope you get > some answers tomorrow and some relief for Drea. > > Hugs Helen and (7,systemic) > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > Well things got worse for Aundrea as the day went on. She came > home > > from school early due to the sorethroat pain and as evening came > the > > rash returned on her face and chest and the joint pain has > returned > > to her wrists, knees and ankles. Her lymph nodes in her neck are > > swollen. Her cheeks are beat red and you would just swear that > she > > has a fever, yet it is normal? > > > > Basically the same thing happened with the last time we tried to > > taper. One week off the pred and everything just comes back. > > > > I guess we will see how things are in the morning. I have a week > to > > go until she sees the rheumy. I kind of hate to make even more > med > > changes with her not seeing the rheumy. As you guys know, this > > rheumy has never even seen her in a flare and all of our med > changes > > have just been made by phone. > > > > Do you think I should just hold out til next Tuesday? > > > > (drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 -.. It has to be very frustating not having immediate access to the doctor. I know if Nick was in the condition Aundrea is right now his doctor would want to see him ASAP and would go out of her way to do so. I would call and see if this doctor is available at a different hospital. Im sure he doesnt just work one day a week. Im sure he must have clinic hours somewhere else locally???? I would call and insist that Aundrea be seen as soon as possible. Even if it means a little longer drive for you. I would be feeling uncomfortable with all this medication being prescribed and changed over the phone without the doctor even seeing her. I would not settle for another round of putting her back on the pred until her appt next week. We all know the pred will be a quick fix, but this doctor cannot just keep doing that. Its just not fair to Aundrea not to have a better plan. Good luck, im thinking of you guys... Hugs Helen and (7,systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Helen, > > The rash on her face looks like what would happen if your child were > outdoors for awhile in the cold. Her cheeks are just BRIGHT red. I > took some more pictures of her with this rash. Generally she just > gets splotches on her cheeks, forehead, neck or chest. Her eyes > were also bloodshot again tonight which tends to coincide with the > joint pain. > > It looks like Aundrea will be home from school tomorrow. I will get > our camcorder out and see if I can figure out how to take a picture > of this rash and post it on the site. > > They told me that they tested her for lupus when she was first sick > and that she was negative. > > The rheumy is only in the hospital on Tuesdays. I don't know where > she is on the other days. I will call tomorrow and find out what > they say. But what if they just call back and tell me to put her > back on pred or to increase the mtx. I mean that has been our > pattern since November. Don't you think that they should either see > her early but if not, do I let them AGAIN change meds without seeing > her?-- > > - In , " hburger64 " <hburger64@h...> wrote: > > > > -.. > > > > I think you need to call the rheumy 1st thing in the morning and > > insist that they SEE Aundrea tomorrrow. This doctor NEEDS to see > her > > in a flare to fully understand whats going on. > > > > I have to ask about the rash on her face, what does it look > like??? > > is it butterfly shaped?? have they tested her for lupus???? > > > > I'm so sorry that her day went from bad to worse. I hope you get > > some answers tomorrow and some relief for Drea. > > > > Hugs Helen and (7,systemic) > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Well things got worse for Aundrea as the day went on. She came > > home > > > from school early due to the sorethroat pain and as evening came > > the > > > rash returned on her face and chest and the joint pain has > > returned > > > to her wrists, knees and ankles. Her lymph nodes in her neck > are > > > swollen. Her cheeks are beat red and you would just swear that > > she > > > has a fever, yet it is normal? > > > > > > Basically the same thing happened with the last time we tried to > > > taper. One week off the pred and everything just comes back. > > > > > > I guess we will see how things are in the morning. I have a > week > > to > > > go until she sees the rheumy. I kind of hate to make even more > > med > > > changes with her not seeing the rheumy. As you guys know, this > > > rheumy has never even seen her in a flare and all of our med > > changes > > > have just been made by phone. > > > > > > Do you think I should just hold out til next Tuesday? > > > > > > (drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 I had a chance to do a little research on Lupus and mixed connective tissue disorders. Aundrea doesn't have the butterfly rash. The rash never crosses the bridge of her nose. This rash is very fleeting. It was so bright and warm all evening and now about 5 hours later it is completely gone! This happens all the time. I do know there is a correlation to sunlight. It can happen at ANY time but is definately worse after being outside. Aundrea does have a positive ANA. The fist test showed it was a smooth pattern 1:160 two further tests indicated it to be a speckled pattern with a titer of 1:320- The different diagnosis that have been " tossed around " include mixed connective tissue disorder, autoimmune disorder of some type, and systemic jra. I looked at the treatment pattern for all of the diseases and it seems that most start off with the NSAIDS, then Plaquenil and next pred/mtx. I wish we knew for sure what was wrong with Aundrea. Its frustrates me. I want to know that we are providing her with the best type of treatment to fight whatever disease she has. (drea 9 systemic) -- In , " sonia1md " <sonia1md@y...> wrote: > > Helen, > > The rash on her face looks like what would happen if your child were > outdoors for awhile in the cold. Her cheeks are just BRIGHT red. I > took some more pictures of her with this rash. Generally she just > gets splotches on her cheeks, forehead, neck or chest. Her eyes > were also bloodshot again tonight which tends to coincide with the > joint pain. > > It looks like Aundrea will be home from school tomorrow. I will get > our camcorder out and see if I can figure out how to take a picture > of this rash and post it on the site. > > They told me that they tested her for lupus when she was first sick > and that she was negative. > > The rheumy is only in the hospital on Tuesdays. I don't know where > she is on the other days. I will call tomorrow and find out what > they say. But what if they just call back and tell me to put her > back on pred or to increase the mtx. I mean that has been our > pattern since November. Don't you think that they should either see > her early but if not, do I let them AGAIN change meds without seeing > her?-- > > - In , " hburger64 " <hburger64@h...> wrote: > > > > -.. > > > > I think you need to call the rheumy 1st thing in the morning and > > insist that they SEE Aundrea tomorrrow. This doctor NEEDS to see > her > > in a flare to fully understand whats going on. > > > > I have to ask about the rash on her face, what does it look > like??? > > is it butterfly shaped?? have they tested her for lupus???? > > > > I'm so sorry that her day went from bad to worse. I hope you get > > some answers tomorrow and some relief for Drea. > > > > Hugs Helen and (7,systemic) > > > > -- In , " sonia1md " <sonia1md@y...> wrote: > > > > > > Well things got worse for Aundrea as the day went on. She came > > home > > > from school early due to the sorethroat pain and as evening came > > the > > > rash returned on her face and chest and the joint pain has > > returned > > > to her wrists, knees and ankles. Her lymph nodes in her neck > are > > > swollen. Her cheeks are beat red and you would just swear that > > she > > > has a fever, yet it is normal? > > > > > > Basically the same thing happened with the last time we tried to > > > taper. One week off the pred and everything just comes back. > > > > > > I guess we will see how things are in the morning. I have a > week > > to > > > go until she sees the rheumy. I kind of hate to make even more > > med > > > changes with her not seeing the rheumy. As you guys know, this > > > rheumy has never even seen her in a flare and all of our med > > changes > > > have just been made by phone. > > > > > > Do you think I should just hold out til next Tuesday? > > > > > > (drea 9 systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2009 Report Share Posted September 30, 2009 Hi group. i dont post to much..But I am again at my whits in..I have been on my forth medication regiman since being diagnosed in may of 2008..I have been on plaquinil and enbrel since this may..I am feeling awful but had beenn ignoring the symptoms because endrel is suppose to be the wonder drug...I see my rheumy thursday....I had my blood work drawn and seen the results already..My lab confirmed that I am most likely in aflare..My sedrate last time was 12 and now it is 65(normal less than 20)..I am so frustrated and the lab work just confirmed my fear..I have my medrol dose pak and started taking it and I am geting relief..My guestion is should this be happening on the enbrel? when I go see him thurday what should I ask or suggest? I dont know right now if it is time to switch again or wait and see a ittle long how enbrel will work? thanks group..I know you might be more informative than what my mind is telling me.. diane in ohio Quote Link to comment Share on other sites More sharing options...
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