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Reply | Forward Message #367 of 612 |
Mycophenalte Mofetil

Now back from London Royal Free where my daughter
was in for two weeks having iloprost and octagam
infusions, the good news is they are holding back the ATG as
her lungs are no worse, also holding back the
cyclophosfomide(sp?) and instead she has just started on Mycophenolate
and having some rough side effects...has anyone elses
relative been on this. Am feeling fairly exhausted now
that we are all home again, I suppose the old
adrenalin has disappeared. Alex met a couple of lovely
girls in her ward at the Royal Free, its the first time
she has met anyone in the same position, they made
great friendships which was lovely.It is a tough ride
for her at the moment and tough for us who love her.
love to all Jilldom
Tue Oct 16, 2001 8:33 pm

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jilldom
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Forward 		Message #367 of 612 |
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Are these acturally success srories,or do these rememdies just help cope with the pain,but these people still have SD,and are they on Oxygen?...
flflow1
Offline Send Email 		Sep 14, 2001
3:43 pm

Now back from London Royal Free where my daughter was in for two weeks having iloprost and octagam infusions, the good news is they are holding back the ATG as...
jilldom
Offline Send Email 		Oct 16, 2001
8:33 pm

My best friend has been in and out of the hospital 3 times in 3 weeks and was finally diagnosed. Almost a year ago she was "diagnosed" with rhemetoid ...
kgmb8490
Offline Send Email 		Oct 22, 2001
2:54 am

Karin<br><br>I am sorry to hear about your friend, My Mum is a sufferer of SD which was diagnosed about 3 years after many hospital visits where the doctors...
kentishlad_1999
Offline Send Email 		Oct 22, 2001
5:17 am

Thanks you for responding Mike. I myself belong to a yahoo group similar in its set to this one for a medical condition of my own, and I have found it to be a...
kgmb8490
Offline Send Email 		Oct 22, 2001
5:21 pm

Hi Everybody!!<br>I just wanted to write a note to re-introduce myself, seems like ever since I joined yahoo a few months ago my life has just gone wacko....
weez_s
Offline Send Email 		Oct 22, 2001
8:05 pm

Hi, this sounds so much like me. I was dx almost five years ago with MCTD and still try to live my life as normal that I'm not sick. I have been so scared ...
madmonkey_76118
Offline Send Email 		Oct 23, 2001
1:09 am

sorry i've been mia lately...life has been kinda nuts on this end...glad to see so many of you posting...welcome to the newcomers!<br><br>well, on halloween,...
blue-eyes-1012
Offline Send Email 		Oct 25, 2001
1:22 pm

My wife was diagnosed with scleroderma this summer, after having a bout with heart palpitations, and a cardiac echo showing pulm hypertension. I think she...
miller7982001
Offline Send Email 		Nov 13, 2001
5:56 pm

My Mother suffers from SD, its the systematic type, I would say its her way of dealing with this disease and the most comfortable way of communicating with...
kentishlad_1999
Offline Send Email 		Nov 13, 2001
6:48 pm

Hi this sounds so much like me. I have been dx. for five years now and still have a hard time when I'm with other scleroderma patients. She has to remember...
madmonkey_76118
Offline Send Email 		Nov 13, 2001
9:08 pm

You mentioned in an earlier message that you had MCTD. How did your doctors come to that conclusion? We are wondering if my wife may have this rather than ...
miller7982001
Offline Send Email 		Nov 14, 2001
1:33 pm

Here's a website on MCTD -<br><a href=http://hometown.aol.com//lindartc/index.htm target=new>http://hometown.aol.com//lindartc/index.htm</a>...
alby40
Offline Send Email 		Nov 14, 2001
2:52 pm

Miller, I'm in Hilliard. Maybe your wife would like to talk to me? I don't have severe facial disease and I understand her problem. The first meeting I walked...
alby40
Offline Send Email 		Nov 14, 2001
2:57 pm

Actually I have been to four Drs. now and that is what they all came up with. I had a hard time believing I was sick. I was only 25 how could I be so sick was...
madmonkey_76118
Offline Send Email 		Nov 14, 2001
4:35 pm

My name is Sharon. I have Scleroderma. I have the same fears. I have not been to a support meeting yet because of the same fear. I am so emotional about my ...
adamsgirl65
Offline Send Email 		Nov 16, 2001
3:40 am

Thank you for your postings. It is helpful to just know other people are out there dealing with this dreadful condition....
miller7982001
Offline Send Email 		Nov 16, 2001
1:45 pm

Hi Sharon,<br><br>I am not a scleroderma sufferer, but my hobby is medicine. There is some new research that seems<br>to be slow to spread about the treatment...
ronfrombell
Offline Send Email 		Dec 1, 2001
6:54 pm

I wish your friend all the luck in the world. I have been suffering along with my wife for five years now. I think we hit the low point last year. She tried ...
wooliegeek
Offline Send Email 		Dec 6, 2001
6:09 am

Hi everyone<br>I am new to this but I have just recently lost my husband of 31 years. He passed away on Nov 8/01.<br>He had sclerodurma and Lupus. He had ...
babieboots
Offline Send Email 		Dec 10, 2001
10:50 am

So sorry for your loss. Hopefully he was not suffering at the end....
miller7982001
Offline Send Email 		Dec 12, 2001
3:52 pm

Is anyone using low-dose antibiotics for scleroderma? There are a few articles out there on this, but our docs do not seem to support it....
miller7982001
Offline Send Email 		Dec 12, 2001
4:04 pm

That's not true. I'm in Columbus and I'm on minocycline. It's not that docs don't support it, they are not allowing others (near Columbus) to claim it as a...
alby40
Offline Send Email 		Dec 12, 2001
4:19 pm

I havent writtne in a while but i have been reading all the posts. My friend was just released form the hospital yesterday. The SD has attcked her kidneys. She...
kgmb8490
Offline Send Email 		Dec 16, 2001
10:43 pm

Karin - This is an article that summarizes a recent study about scleroderma renal crisis:<br><a...
alby40
Offline Send Email 		Dec 16, 2001
11:07 pm

Thanks for the info! It is greatly appreciated!<br>Karin...
kgmb8490
Offline Send Email 		Dec 17, 2001
6:32 pm

Best wishes to all for a great new year. I hope everyone is doing well. Ihaven't posted in a while, but thought I would stop by to say hi and wish you all the ...
cattm42
Offline Send Email 		Dec 29, 2001
12:39 am

Hi all.<br><br>My mum is a sufferer of this aweful disease, I was wondering, does anyone know whether smoking although the normal adverse affects, does it...
kentishlad_1999
Offline Send Email 		Feb 3, 2002
6:15 pm

Obviously it depends on the medication - ask your pharmacist. If your mum has Raynauds's, smoking is certainly contributing to that, as nicotine causes blood...
alby40
Offline Send Email 		Feb 4, 2002
3:18 am

COLUMBUS, Ohio - People who get icy-cold fingers and toes may have more than just an aversion to winter weather. <br><br>Researchers have determined the cause...
alby40
Offline Send Email 		Feb 5, 2002
2:31 am
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