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Reply | Forward Message #9024 of 29338 |
Remicade Update

Greetings!

I had a 2-month follow-up appointment with my rheumatologist this past Wednesday. She was quite impressed with my results. I have had less pain from both arthritis and Dercum's Disease (DD), and the DD tumors on my legs and abdomen look much better than before the Remicade. I actually have knee caps again instead of puffy, huge, red places where the knees were supposed to be. I took a TB test, which had to be read on Friday late afternoon. That was negative, thank goodness.

For those of you who are new, Remicade was a cancer chemotherapy drug that proved to be too toxic for that use. But, in much lower doses, it is used to treat several diseases in addition to Rheumatoid Arthritis (RA) - including Ankylosing Spondylitis (AS) - the rare form of RA that I have. I had to go for the first infusion, then a second two weeks later, and the third was 4 weeks after that. My next one will be in 8 weeks, and continue at that time interval for successive treatments. My rheumy also prescribes IV doses of Benedryl and hydrocortisone before the 2-hour infusion of Remicade each time. The first 2 drugs are to preclude any reactions from the Remicade. It has worked fine that way for me. I get really tired about 10 minutes after the Benedryl, and often nap a little during the treatment.
Infliximab reduces the effects of a substance in the body called tumor necrosis factor alpha. Tumor necrosis factor alpha is involved in inflammatory processes in the body.
--from www.drugs.com
We decided to go on and add Methotrexate and folic acid to this treatment. This week, I started once a week, on Saturday, with 4 pills of Methotrexate - 2 in the morning and 2 at night. I have to take folic acid every day, too. As long as I do not have any adverse reactions to the Methotrexate, she will keep adjusting the dose. I go back to see her again in 4 weeks to see about adding a 5th pill to the weekly regimen.
Methotrexate interferes with the production and maintenance of DNA, which is the genetic material in the cells of the body. Methotrexate has a greater effect on cells that reproduce often such as cancer cells, bone marrow cells, skin cells, and others. This is how methotrexate works in the treatment of cancer and psoriasis. It is not known exactly how methotrexate works in the treatment of rheumatoid arthritis.
--from www.drugs.com
Sometime this week, my husband will take some photos to compare with the ones we took before I started Remicade. He has been keeping track of the changes I thought I was feeling. But, it was nice to see what my rheumy had to say. She was very upset after seeing me in September saying that she went home that night and almost cried. Now she has told me that I should tell the endocrinologist what we are doing and that I "had discovered my own treatment." She said she just "writes the prescriptions." Of course, it is more than that. We talk and she listens to my ideas. Then we figure out what to do together. It is so had to find doctors who are willing to work with you that way, and I am fortunate to have a few that listen and work with me. She even talked about writing this up after a while for others to have the information available.

I feel very thankful that things are getting better, and hope they will continue to improve. Once we get the photos taken, I will post them on the Photos page and let you all know they are up.

Take care and be well. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
doramt@...
Yahoo! Messenger ID: w3icdora
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word
and the almost right word is the difference
between lightning and the lightning bug."
--Mark Twain

Mon Nov 8, 2004 2:46 am

doramtw3
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Message #9024 of 29338 |
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Hello, My name is Angela and I have recently been diagnosed with Dercums. My tumors are usually not painful unless I touch them or bump them. Also, I bruise...
afk1007@...
afk1007
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Nov 7, 2004
5:53 am

Welcome, Angela! I don't have the experience of tumors that are painless unless touched (mine hurt like the devil most of the time, LOL!) but I do tend to...
shari@...
sharicn
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Nov 7, 2004
6:22 am

Hi Angela, Welcome to the group! I, too, am interested in where you live, what kind of Dr. diagnosed you, and maybe even his/her name! I don't post often, but...
bkwrm40
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Nov 7, 2004
5:53 pm

Hi Sue, I am a 45yr old white female living in GA. My doctor is an interist. However, it was an endocrinologist that diagnosed me 5 years ago with...
afk1007@...
afk1007
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Nov 11, 2004
4:48 am

Welcome to our "elite group" Angela! I'm Judi, 58, a married grandmother living in southern Indiana. I was diagnosed a year ago, had surgery last year 4 times...
nonny46
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Nov 7, 2004
7:08 pm

Greetings! I had a 2-month follow-up appointment with my rheumatologist this past Wednesday. She was quite impressed with my results. I have had less pain from...
Dora Maillaro-Tomalonis
doramtw3
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Nov 8, 2004
2:46 am

Hi Dora! Glad to hear that things seem to be improving! I have been on methotrextate and folic acid for quite a while now and it's been keeping my AS symptoms...
shari@...
sharicn
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Nov 8, 2004
11:47 pm

Hi Dora! Glad to hear things are continuing to improve, and I also appreciate the time you're taking to keep us informed of all the details. I also went to my...
shari@...
sharicn
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Dec 16, 2004
7:55 am
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