Scleroderma Information » Scleroderma » latest research?
Question:
- Hide quoted text — Show quoted text -> Kate, > I participated in the D-pen study at Johns Hopkins Bayview. My portion > of the study was over this past July. I don’t know if it is "the" study > that you are speaking of or not. However, when I saw my doctor a couple > of weeks ago, we were chatting about that study. She told me that she > still did not know if I was taking the high dose or the low dose but > that she would let me know when she found out. > Anyways, the point of this is that I guess they have not yet finished > compiling the results/reports since not even the participating doctors > have any information yet. I am anxious to find out the results myself. > However, from my personal experience, I had wonderful results from the > d-pen. Now, my doctor and I disagree as to whether the d-pen is > responsible for my improvement (I think it is) or if my natural healing > is responsible (She thinks it is). I went from being horribly sick to > having only hand contractures to mark me as a scleroderma patient. I > went from 65% to 95+% lung capacity and dropped 40 lbs of edema weight. > I am "normal" (as normal as I get anyways) except for the claw like > hands, but they are soft hands that haven’t had an ulcer since early in > the disease. I still have the Raynauds, but control it with gloves and > warm clothes and I still have the high blood pressure, but control it > with Vasotec and atenolol (sp). > So anyways, now that I have rambled on forever, my bottom line is that I > believe that the d-pen had an enormous positive affect for me personally > and that I do not believe that the results of the studies have even been > released to the docs, much less to the public. I hope it is not their > intention to keep it a secret. I will post if I get any information > from my doc. Sorry to prattle on so! 
> Beth G
Beth G, I’m curious how long you were taking the D-Penn, and if you are still taking it? I have been on D-Penn since August 96. I started at a small dosage and In March was brought up to 1000 mg. My symptoms with lung involvement are similar to yours with the exception of restoration of lung capacity. It appears as my lungs haven’t gotten any worse however. I want to give the the D-Penn at the higher dose a chance as it is not bothering me with any ill side effects. I am glad to hear your lungs have gotten better. Greg s ——————-==== Posted via Deja News ====———————– http://www.dejanews.com/ Search, Read, Post to Usenet
Response:
Results should be coming soon on the Relaxin study and on the big D-Pen study (supposedly to answer the question of whether it really is effective or not.) There was also a recent study using Thalidomide – it may still be going on. Check out www.centerwatch.com and Medline for current and reports of studies. Also, call/write/email/show-up-on-their-doorstep the United Scleroderma Foundation, the Scleroderma Federation, and the Scleroderma Research Foundation. All are sponsoring studies and they are even cooperating on funding of some. Someday we’ll just have to make ONE PHONE CALL to Scleroderma International instead of all these groups…;-) Amie Y. visit the I HAVE SCLERODERMA website – http://www.epix.net/~knance/
Response:
A female cousin of mine has advanced scleroderma. Her condition has been helped by using prednizone to keep her strength up. Does anyone have the latest news on the medical front as to what drugs are currently being tested to cure scleroderma. Also, has anyone benefitted from any herbal rememdies? RSternb…@aol.com
Response:
I’m really curious about these studies. I heard somewhere the Dpen study is not going to come up with anything positive on DPen. It’s so easy to put stuff up on the web. If USF or SF don’t do it, Sherry and I can do it. All we need is a text file. I assume all these reports and abstracts will be typed on a word processor. So text files will exist. I would like to think at the least, informative abstracts of all studies that are underway and funded by the USF/SF combo could be on the web. And I think there should be progress reports and dates of final reports for on-going studies. And lists of published articles on studies funded by USF/SF. I think USF/SF should be particularly accountable for the studies they fund for this reason: Most of the money they raise is from people with SD and their familes. It’s not like the Red Cross or Heart Assoc where millions of different people give. It’s a small nucleus of people. We should know not only the name of the study, and who got the grant, but how it turned out – was anything published? Is the research continuing? And I have received mailings from SRF hinting that they are close to making big breakthroughs, and asking for more money, but no real information about the studies they are doing is provided. I’m sure this is a good fundraising technique, but I’m not sure how keeping the details secret serves anyone. We are all so hungry for information. Kate Nance I HAVE SCLERODERMA http:www.epix.net~knance
Response:
I don’t have scleroderma, but while reading info at the DMSO site (for another problem, Crohn’s) I saw interesting info in regards to scleroderma treatment, and decided to post the link here in case any of you are interested in it. good luck. Jerry for a couple specific cases go to: http://www.dmso.org/testimonials/index.html and for their home page go to: http://www.dmso.org
Response:
The medical research studies that are jointly funded by the Scleroderma Federation and United Scleroderma Foundation are openly available from both organizations — and both publish reports in their newsletters. All research funded by these organizations are subject to peer review by a prestigious Medical Advisory Board of top SD experts worldwide. Kate, you’re welcome to call USF (and I’m sure SF) and get copies of these research papers to reproduce on the Internet. Ronni V.P., USF
Response:
Jim & Kate Nance wrote: – Hide quoted text — Show quoted text -> I’m really curious about these studies. I heard somewhere the Dpen study > is not going to come up with anything positive on DPen. > It’s so easy to put stuff up on the web. If USF or SF don’t do it, > Sherry and I can do it. All we need is a text file. I assume all these > reports and abstracts will be typed on a word processor. So text files > will exist. > I would like to think at the least, informative abstracts of all studies > that are underway and funded by the USF/SF combo could be on the web. > And I think there should be progress reports and dates of final reports > for on-going studies. And lists of published articles on studies funded > by USF/SF. > I think USF/SF should be particularly accountable for the studies they > fund for this reason: Most of the money they raise is from people with > SD and their familes. It’s not like the Red Cross or Heart Assoc where > millions of different people give. It’s a small nucleus of people. We > should know not only the name of the study, and who got the grant, but > how it turned out – was anything published? Is the research continuing? > And I have received mailings from SRF hinting that they are close to > making big breakthroughs, and asking for more money, but no real > information about the studies they are doing is provided. I’m sure this > is a good fundraising technique, but I’m not sure how keeping the > details secret serves anyone. > We are all so hungry for information. > Kate Nance > I HAVE SCLERODERMA http:www.epix.net~knance
Kate, I participated in the D-pen study at Johns Hopkins Bayview. My portion of the study was over this past July. I don’t know if it is "the" study that you are speaking of or not. However, when I saw my doctor a couple of weeks ago, we were chatting about that study. She told me that she still did not know if I was taking the high dose or the low dose but that she would let me know when she found out. Anyways, the point of this is that I guess they have not yet finished compiling the results/reports since not even the participating doctors have any information yet. I am anxious to find out the results myself. However, from my personal experience, I had wonderful results from the d-pen. Now, my doctor and I disagree as to whether the d-pen is responsible for my improvement (I think it is) or if my natural healing is responsible (She thinks it is). I went from being horribly sick to having only hand contractures to mark me as a scleroderma patient. I went from 65% to 95+% lung capacity and dropped 40 lbs of edema weight. I am "normal" (as normal as I get anyways) except for the claw like hands, but they are soft hands that haven’t had an ulcer since early in the disease. I still have the Raynauds, but control it with gloves and warm clothes and I still have the high blood pressure, but control it with Vasotec and atenolol (sp). So anyways, now that I have rambled on forever, my bottom line is that I believe that the d-pen had an enormous positive affect for me personally and that I do not believe that the results of the studies have even been released to the docs, much less to the public. I hope it is not their intention to keep it a secret. I will post if I get any information from my doc. Sorry to prattle on so! Beth G
Response:
Dear RSternb122: I have had Scleroderma for almost 4 years. Mine is the systemic form of the disease. Early on in the disease process, I participated in a Photopheresis Study. Photopheresis has been approved by the FDA for treatment of Lymphoma. The protocol I participated in is now finished, and the FDA should be acting on it within the next 6-9 months, according to one of the salesmen that works for the machine that they use for the treatments. As with other research studies, this particular one was called a double-blind study. Only the nurse administering the treatments knows who received the "active" treatment and who received the "placebo". Since the protocol, they have gotten approval from my insurance company to continue treatments for almost another year, and that was primarily for "compassionate reasons". They felt if I participated in a study for an entire year without knowing if it would or would not provide any benefit, that I and others would deserve to get the real treatment for a year. Anyway, I wonder all of the time whether or not I received the placebo. I don’t know if they will ever tell me. I also don’t think they intend to send me the results of the study. I will have to pursue this on my own if I want them. And you can bet I will do just that. I also take a liquid mineral supplements in addition to a variety of vitamin supplements. I believe the combination of the Photopheresis and the supplements has helped stop the progression of my disease to a certain extent. As with the other treatments, they work for some, and may not work for others. Anyway, that is my two-cents worth. I will be glad to provide more information if you would like. Have a great day, everyone! Margie Diamon – Hide quoted text — Show quoted text -RSternb122 wrote: > A female cousin of mine has advanced scleroderma. Her condition has been > helped by using prednizone to keep her strength up. Does anyone have the > latest > news on the medical front as to what drugs are currently being tested to > cure > scleroderma. Also, has anyone benefitted from any herbal rememdies? > RSternb…@aol.com
Response:
I take DPen 1500mg, Immuran and Prednisone. I know of others who take a DPen/Methotrexate combo. I’ve had both remissions and exacerbations while on DPen alone. I also had a remission while on Cyclosporin. I can no longer take cyclo or MTX due to kidney and liver side effects. I’ve had three exacerbations and three remissions over ten years of illness. Dr Medsgar says this is quite unusual, that the usual course for diffuse is rapid onset followed by remission and a stable course thereafter. (Disease severity measured by skin thickness) I want to beleive that the DPen/Immuran/Pred is THE magic combo for me, and that the disease is under control. It seems as though we are all so different, taking so many combinations and what works for one does not always work for another. I’m so eager to hear the results of these studies. I believe there is also a study of the antibiotic therapy going on, in addition to the DPen and Relaxin. Does anyone know about this one? Kate Nance I HAE SCLERODERMA http://www.epix.net/~knance/
no comment untill now