Scleroderma Information » Scleroderma » Interstial Lung Disease
Question:
Sorry I just reread your post and see you said it was in a tristate newsletter. I have kept all of mine for two years so I’ll take a look through them and see if I can come up with it. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
Response:
><HTML><PRE>Subject: Interstial Lung Disease >From: colms…@webtv.net (Connie Olmscheid) >Date: Sat, Sep 26, 1998 00:56 EDT >Message-id: <6018-360C73FD…@newsd-132.iap.bryant.webtv.net> > Thanks for all the response to my post. In regard to a comment on >whether I was ever on D-Pen . I was on it for about 13 years until I >developed the lung disease.
I am so happy that you are doing well on the cytoxan. I had come online to ask what you had you aready answered in your current post. The information that my doctor gave me is a copy from what looks like may be an old federation newsletter, before the merger. I really don’t know but the format appears to look that way. It was from a tri-state publication. I plan to call and find out exactly who, what and where. I was told that if you begin d-penn at onset with diffuse scleroderma that is plays a big part in delaying and possibly preventing lung disease. The article supports this but goes on to state that if lung disease does develope while on d-penn that the course is generally less serious and tends to respond to treatment with (sp?) cyclophosphamide drugs. That is fancy for cytoxan. It also stated (I wish I had a scanner) that d-penn is a toxic drug that for some reason out of all the illnesses it has ever been used for and RA was at the top of the list. Scleroderma patients seem to tolerate best. The reason for this was not known.. My personal experience so far has been with my skin. I tightened up suddenly and almost overnight. I was told that I went further in six months then most do in several years. I was put on a thousand mgs. daily and in a matter of four months am seeing a tremendous change. My hands were just starting to get hard and signs of contractures were showing. My torso is back to normal and hopefully in time my legs and elbows, which are in almost a fixed position at about 45 degrees will soften. I tried physical therapy but developed tears at the points of my elbows from forcing them. As far as anything internally so far I test normal, but I don’t feel normal. my doctor has conceded that the way I am feeling could be the start or hopefully it is from the fear of it or the anxiety. He also told me straight out that other then the opinions of d-penn and any other medication he treats with are solely based on his own experiences and at times pure "gut" feelings about how he feels a patients will do. He is well known and respected and I have chosen to trust him. . I did consult with two other big name doctors and got the same humble response. I settled with the one I am with because he is calm and easy to talk to and also put me in touch with some of his other patients who have done well. I also like the fact that he is not out to make a name for himself and is a good listener. I personally want to be put on prednisone. I have a friend with another immune illness called sarcadosis (sp?) and she takes five mgs of it daily for her breathing and has had good results. I am currently trying to educate myself about whether there are any similarities in the two diseases or if hers is just very responsive to steroid type drugs. I also understand that methotrexate is now being studied. I read in one place for skin then in another for internal involvement only. I can’t find anything that describes the actual study. Maybe someone knows more and would direct me. The fact that your lungs became involved after thirteen years of treatment with d-penn can be argued to indicate that (1) It does nothing for the lungs or (2) It was factor in delaying it. What are your feelings about this?. Please, don’t answer the question makes if you feel uncomfortable. To me it is like all I have seen with scleroderma. The variations are so vast that nobody can tell anything with certainty. Regards and I will hold you in my prayers, Tamara PS- I am sorry about closing my e-mail but there must be some really offbeat people out there who get their kicks out of sending completely out of context information and my mail was flooded. Some was frieghtening and obviously not from a patient but it was getting to be hard for me to know what to open or delete and I feared a PC virus. I still maintain that what some wrote here was not proper and will contineu to lurk more then comment but what you posted about d-penn was a very important item. I know many who stopped the drug after the study on it was released. Also my doctor told me he would be happy to start me on the antibiotic protocol if I wanted in conjunction with my other treatment. He feels it is safe and left the choice to me. I have decided to wait. If I start and begin to get better I won’t know which drugs to discontinue at this point. So for at least one year (and that was a time I made up) I will stick with what I am on unless I get much worse, but at the moment my skin is improving.
Response:
> I am sorry about >closing my e-mail but there must be some really offbeat people out there who >get their kicks out of sending completely out of context information and my >mail was flooded. Some was frieghtening and obviously not from a patient but >it was getting to be hard for me to know what to open or delete and I feared a >PC virus
Tamara, there was another lady here a while back that claimed to be getting a lot of offensive mail. I don’t know if she ever got the problem solved. She said she called her ISP and they helped. Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
Response:
Thanks for all the response to my post. In regard to a comment on whether I was ever on D-Pen . I was on it for about 13 years until I developed the lung disease. I feel fine now on cytoxan other than coughing quite a bit and being tired quite a bit which I contribute towards working full time 12 hour night shifts. I am short on breath at times but as long as I can work full time I am happy with that. I wondered what happened to a person after being taken off the cytoxan. I am a sole supporter so I am always worried about not being able to work someday because of SD. Thanks again for all the response to this. B.J. connie o
Response:
>Sorry I just reread your post and see you said it was in a tristate >newsletter. I have kept all of mine for two years so I’ll take a look >through them and see if I can come up with it.
Sherry, On Monday I will call my doctor’s nurse and ask her to tell me the date and volume number. It is on the copy but not clear enough to read. I figure it had to be written close to the time that the d-penn study came out. It is about one full page and then the first two columns of another. As for my mail I did all the reporting the way you are told to but this area is not a controlled one so I was told to just change my name. It looked like my complaints were taken up as if the messages that I had sent to them were from the news group not my personal mail. I just blocked it at that point. Whoever is doing it will get bored with no audience. I don’t have the time to keep reporting. I am not posting under my real name so it makes no difference. The recent exchanges here other then a few out of context have been very pertinent I feel to all diffuse patients. It is so unfortunate, and this is purely my own feeling that no real conclusive studies seem to ever have been completed properly and what I have read about the current ones it sort of looks like we are in for the same type of out come. It seems that many doctors do agree that relaxin is the most promising drug being looked at. I can’t find any information that states for what type of scleroderma. If it applies to onset or will help later stage patients. Is it being studied for internal involvement, skin or all of the above????? You just had some very serious surgery and I will not ask you anything personal and want to extend my well wishes. I know from what you have stated that your doctor is among the best, has he reached any conclusions about relaxin? The most my doctor will say is that it is promising and thought to be safe. For me that is very little to go on. The antibiotics he will only dispense in conjunction with d-penn. To me at this point since I seem and I stress the word seem to be doing well I want to wait even though I prefer the safety of the antibiotics. To mix them would further confuse me. Regards Tamara
Response:
> The article supports this but goes on to state that > if lung disease does develope while on d-penn that the course is generally > less serious and tends to respond to treatment with (sp?) cyclophosphamide > drugs. That is fancy for cytoxan. It also stated (I wish I had a scanner)
Tamara, If you can tell me where the article was published and the article numbers I might be able to get my doctors nurse to send me a copy of it to scan. I also might be able to find it in the online medical journals. Thanks in advance! — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
Response:
>You just had some very serious surgery and I will not ask you anything personal >and want to extend my well wishes. I know from what you have stated that your >doctor is among the best, has he reached any conclusions about relaxin?
Thank you for the well wishes. My doctor basically has said about the same as yours. That is seems promising and he doe’s feel more hopeful about it than anything else being studied at this time. Here are two links that you might wish to visit and see if they answer some of your questions. Release by The associated Press. http://www.SclerodermaSupport.com/relaxinpress.html A very descriptive article on the Relaxin Study http://www.pslgroup.com/dg/eeee.htm Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
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