Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 Marla, I wonder if you have an infection going on. What you described is what I went through all last month-- serious crs. It turned out to be a bronchial infection, along with the pulmonary hypertension. So, not only was there an elephant on my chest, there was also a hippo on my heart-- not a good thing. It took two antibiotics, 7 days of Avelox then 10 days of Levaquin to knock it out, and needless to say, I'm dealing with the yeasties now. But I can finally breath, it's the coughing that is tough-- I've actually ended up with some cracked ribs from coughing. Makes ya wanna say darn.. I have no idea what your password is for yahoogroups, but if we need to reset it you can do that. I don't know if you'd have to put together a new address or what. Is it time to increase the strength of the Remicade mg/kg? Or is it the interval that seems off? I've topped out at every 28 days at 10mg/kg--- but it still is helping the body-spine pain and I am thinking more clearly during the first 18-21 days. So I'll just deal with that last week. It was weird, because I honestly didn't feel sick until it had already gone over the edge and was sitting next to becoming pneumonia. My doc was looking at the labs and my WBC was high normal-- which for me meant I was really sick-- as my normal is now on the low side of normal-- but not totally wiped out like they did with . It's a tight rope we walk, and we just have to make sure it doesn't turn into a noose... Anyway, Happy Easter to you! With love, Tracie Subject: Happy DayTo: "NS" <neurosarcoidosis >Date: Sunday, April 12, 2009, 8:36 AM Happy Easter to all! I hope you have a blessed Day. I haven't been answering many emails, I am now having trouble with my BP, it's either too high or too low, so we are adjusting meds??? Mods, I can't remember my yahoo password, I sent a note to them but did not hear back. My mind is spacey again, this last Remicade tx has not been as good as the others??? Anyhoo Have a very Blessed Day! Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2009 Report Share Posted April 12, 2009 , don't get nervous, all the other stuff is just dealing more with the sarcoid, the Remicade is good, I do feel a lot better with it, I just think I had someother things going on too:) Marla Oh dear now I'm getting a little nervous about the Remicade!Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: Marla Bramer <mebramer (AT) gmail (DOT) com>Subject: Happy DayTo: " NS " <neurosarcoidosis@ yahoogroups. com>Date: Sunday, April 12, 2009, 8:36 AM Happy Easter to all! I hope you have a blessed Day. I haven't been answering many emails, I am now having trouble with my BP, it's either too high or too low, so we are adjusting meds??? Mods, I can't remember my yahoo password, I sent a note to them but did not hear back. My mind is spacey again, this last Remicade tx has not been as good as the others??? Anyhoo Have a very Blessed Day! Marla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2009 Report Share Posted April 19, 2009 Thanks Marla. I know I'm tired of the Cytoxin side effects so let's bring on some different ones! Two hours I can nap through easy enough. I will have to get up there earlier and I'm not a morning person but oh well, I'll adjust.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... From: Marla Bramer <mebramer (AT) gmail (DOT) com>Subject: Happy DayTo: "NS" <neurosarcoidosis@ yahoogroups. com>Date: Sunday, April 12, 2009, 8:36 AM Happy Easter to all! I hope you have a blessed Day. I haven't been answering many emails, I am now having trouble with my BP, it's either too high or too low, so we are adjusting meds??? Mods, I can't remember my yahoo password, I sent a note to them but did not hear back. My mind is spacey again, this last Remicade tx has not been as good as the others??? Anyhoo Have a very Blessed Day! Marla Quote Link to comment Share on other sites More sharing options...
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