Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 <A HREF= " http://www.thalidomide.ca/position.html " >Position Paper</A> <A HREF= " http://search.aol.com/redirect.adp?appname=QBP & query=%26%91%ac%82%7f%05% d9%7b%ae%c6%1a%53%79%ee%7a%57%a7%07%43%e5%6d%d8%1b%69%ae%9f%e3%6e%35%36%c4%aa% 81%dd%af%e3%7f%5d%69%77%b0%f7%73%a5%8d%e2%c9%f1%f4%03%ee%7a%2e%d2%82%77%27%ba% c3%bb%1d%06%6d%a3%95%33%da%23%d1%ea%22%0b%57%2b%83%e6%7b%10%34%da%45%59%f2%f8% d5%1b%95%05%c1%2a%67%72%2d%3e%bf%2c%24%f0%90%27%f7%03%ed%a0 " >Encyclopedia.com - Results for thalidomide</A> <A HREF= " http://www.aidsinfonyc.org/network/simple/thalid.html " >Simple Facts Sheets: thalidomide</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Joanna, I don't know HOW I can help research, but if you can give me a few pointers, let me know. I'd love to help out... Kim thalidomide > > Hi, > > I met a woman at Bangkok airport yesterday who teaches children in Bangladesh how to make handcrafts so that they can support themselves when their parents die of aids, (apparently dad goes into town, sleeps with prostitutes and brings it home to mom and kids are left homeless and unless they can support themselves are sold into prostitution). > > Anyway, she told me that 'they' are still giving thalidomide to moms and that the effects are being shown on the limbless babies being born. I started to quiz her.....who is giving this to the moms, where does it come from, which company supplies it, is it old stock? etc etc. This woman shook her head and said she didn't know (at this stage I nearly shook her!!!!!!). > > I told her that this practise could be seen as illegal and she agreed, but disappeared before I could get her name or the organisation she worked for. > > Any hints on how to follow this up. I'm wondering if this is thirty year old dumped stock and want to know which pharma company whoudl be involved in this. > > Any hints on where to start???? > > Joanna > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Ii Family <jeffii@...> wrote: Joanna, I don't know HOW I can help research, but if you can give me a few pointers, let me know. I'd love to help out... Kim I think I'll start by finding out the manufacturer and when manufactured ceased. I need to determine if this is old 'dumped' stock or whether it is still being manufactured for these markets......... I'll let you know how I go.... Joanna thalidomide > > Hi, > > I met a woman at Bangkok airport yesterday who teaches children in Bangladesh how to make handcrafts so that they can support themselves when their parents die of aids, (apparently dad goes into town, sleeps with prostitutes and brings it home to mom and kids are left homeless and unless they can support themselves are sold into prostitution). > > Anyway, she told me that 'they' are still giving thalidomide to moms and that the effects are being shown on the limbless babies being born. I started to quiz her.....who is giving this to the moms, where does it come from, which company supplies it, is it old stock? etc etc. This woman shook her head and said she didn't know (at this stage I nearly shook her!!!!!!). > > I told her that this practise could be seen as illegal and she agreed, but disappeared before I could get her name or the organisation she worked for. > > Any hints on how to follow this up. I'm wondering if this is thirty year old dumped stock and want to know which pharma company whoudl be involved in this. > > Any hints on where to start???? > > Joanna > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Okay! Sounds good.... Kim thalidomide > > > > > > Hi, > > > > I met a woman at Bangkok airport yesterday who teaches children in > Bangladesh how to make handcrafts so that they can support themselves when > their parents die of aids, (apparently dad goes into town, sleeps with > prostitutes and brings it home to mom and kids are left homeless and unless > they can support themselves are sold into prostitution). > > > > Anyway, she told me that 'they' are still giving thalidomide to moms and > that the effects are being shown on the limbless babies being born. I > started to quiz her.....who is giving this to the moms, where does it come > from, which company supplies it, is it old stock? etc etc. This woman > shook her head and said she didn't know (at this stage I nearly shook > her!!!!!!). > > > > I told her that this practise could be seen as illegal and she agreed, but > disappeared before I could get her name or the organisation she worked for. > > > > Any hints on how to follow this up. I'm wondering if this is thirty year > old dumped stock and want to know which pharma company whoudl be involved in > this. > > > > Any hints on where to start???? > > > > Joanna > > > > > > > > --------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 In a message dated 11/9/04 8:03:48 AM Mountain Standard Time, SSRI medications writes: > I don't know if any of the > folks on this list are old enough to remember Thalidomide. Quite a few > pregnant women in Europe used that drug -- I forget what it was for -- > and their children were born with grotesque physical defects Unfortunately, Gertie, I can vaguely remember this debacle. The drug was used as a morning-sickness drug. It's now made a comeback and is used to treat certain cancers. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hmmm...from morning-sickness to cancer. Interesting. Re: Thalidomide In a message dated 11/9/04 8:03:48 AM Mountain Standard Time, SSRI medications writes: > I don't know if any of the > folks on this list are old enough to remember Thalidomide. Quite a few > pregnant women in Europe used that drug -- I forget what it was for -- > and their children were born with grotesque physical defects Unfortunately, Gertie, I can vaguely remember this debacle. The drug was used as a morning-sickness drug. It's now made a comeback and is used to treat certain cancers. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hmmm...from morning-sickness to cancer. Interesting. Re: Thalidomide In a message dated 11/9/04 8:03:48 AM Mountain Standard Time, SSRI medications writes: > I don't know if any of the > folks on this list are old enough to remember Thalidomide. Quite a few > pregnant women in Europe used that drug -- I forget what it was for -- > and their children were born with grotesque physical defects Unfortunately, Gertie, I can vaguely remember this debacle. The drug was used as a morning-sickness drug. It's now made a comeback and is used to treat certain cancers. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 I was discussing the drug industry with a friend. He mentioned that what happens is a little group will do research and people with money will throw their money in about 20 of these. Normally only one hits it big and then it's either bought by a drug company or licensed. This way the drug companies like Pfizer don't have to mess with the gamble of the experiments. Anyways it takes so much money to get it to the FDA that they will do just about anything as we have seen. Millions. So if they have this drug, even though it should be tossed, they have all this money in it and so they recreate a use for it like Thalidomide and Straterra, which is a failed antidepressant, which considering the God aweful effects of the ones they did get FDA approval on must have killed some people for them not to use it. So now we have this great ADHD treatment that's " non-stimulant " , as they foist it off, we can give our children. Great biz huh? My suggestions: 1.Strengthen tort, don't reform it so as to keep the companies in some check. 2.Don't trust the FDA at all (if you ever did) 3.Protect the natural vitamins and nutrional supplements from the FDA and drug companies. 4.Inform everyone you can. It's the only way to beat the industry at this game. .. Re: Thalidomide > > > In a message dated 11/9/04 8:03:48 AM Mountain Standard Time, > SSRI medications writes: > > > > I don't know if any of the > > folks on this list are old enough to remember Thalidomide. Quite a few > > pregnant women in Europe used that drug -- I forget what it was > or -- > > and their children were born with grotesque physical defects > > Unfortunately, Gertie, I can vaguely remember this debacle. The drug was > used as a morning-sickness drug. It's now made a comeback and is used to > treat > certain cancers. > > " Blind Reason " > a novel of pharmaceutical intrigue > Think your antidepressant is safe? Think again. It's > Unsafe At Any Dose > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 I was discussing the drug industry with a friend. He mentioned that what happens is a little group will do research and people with money will throw their money in about 20 of these. Normally only one hits it big and then it's either bought by a drug company or licensed. This way the drug companies like Pfizer don't have to mess with the gamble of the experiments. Anyways it takes so much money to get it to the FDA that they will do just about anything as we have seen. Millions. So if they have this drug, even though it should be tossed, they have all this money in it and so they recreate a use for it like Thalidomide and Straterra, which is a failed antidepressant, which considering the God aweful effects of the ones they did get FDA approval on must have killed some people for them not to use it. So now we have this great ADHD treatment that's " non-stimulant " , as they foist it off, we can give our children. Great biz huh? My suggestions: 1.Strengthen tort, don't reform it so as to keep the companies in some check. 2.Don't trust the FDA at all (if you ever did) 3.Protect the natural vitamins and nutrional supplements from the FDA and drug companies. 4.Inform everyone you can. It's the only way to beat the industry at this game. .. Re: Thalidomide > > > In a message dated 11/9/04 8:03:48 AM Mountain Standard Time, > SSRI medications writes: > > > > I don't know if any of the > > folks on this list are old enough to remember Thalidomide. Quite a few > > pregnant women in Europe used that drug -- I forget what it was > or -- > > and their children were born with grotesque physical defects > > Unfortunately, Gertie, I can vaguely remember this debacle. The drug was > used as a morning-sickness drug. It's now made a comeback and is used to > treat > certain cancers. > > " Blind Reason " > a novel of pharmaceutical intrigue > Think your antidepressant is safe? Think again. It's > Unsafe At Any Dose > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 In a message dated 11/10/04 3:33:14 PM Mountain Standard Time, SSRI medications writes: > Hmmm...from morning-sickness to cancer. Interesting Actually, I think Brady ( Brady's wife) is taking Thalidomide for her cancer. Can't remember what kind she has. That was the first I'd heard that it was being used for that. Yes, it IS quite a leap. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 In a message dated 11/10/04 3:33:14 PM Mountain Standard Time, SSRI medications writes: > Hmmm...from morning-sickness to cancer. Interesting Actually, I think Brady ( Brady's wife) is taking Thalidomide for her cancer. Can't remember what kind she has. That was the first I'd heard that it was being used for that. Yes, it IS quite a leap. " Blind Reason " a novel of pharmaceutical intrigue Think your antidepressant is safe? Think again. It's Unsafe At Any Dose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Jan, I can't help you on the thalidomide, but I wanted to welcome you to the list. I hope someone chimes in to help you. (n, 16,systemic) On May 25, 2005, at 8:51 PM, jatwilly wrote: > Hi everyone. My name is Jan and I am seeking information about > Thalidomide. My son is 6 and has had systemic JRA for 4 years. It > has progressed quite severely and we have been through most all of the > drugs available and are almost ready to start Thalidomide, with hopes > to get off or decrease the steroids and control the inflammation. > > I have read some emails from this list regarding JRA kids using > Thalidomide. I am interested in hearing from anyone about the side > effects their JRA kids experience while on Thalidomide. Specifically, > I am wondering about any numbness or peripheral neuropathy symptoms. > > I greatly appreciate any feedback...finding mother to mother sharing > of information often so helpful! Thanks, Jan > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Jan- Nice to meet you! Sounds like we have parallel stories... my daughter is 7 with systemic JRA. July 15 will make 4 years since diagnosis... and like you, we've been through most of the meds. We are just starting Thalidomide. I actually just completed the rather taxing process of getting the prescription filled. Due to the history of the medicine, there is a rather strict registration process guarding it's use. Both the patient and the prescribing doc must register with Celgene. Then, when the doc writes the script, he/she must call and get an auth # from Celgene. Once the # is give, the scipt is good for seven days. When I took it to the pharmacy, they also had to call Celgene for another auth. #. Normally, that would have been it.... but we discovered that my insurance considers that a specialty medication and it must come, therefore, through mail order. After much wrangling on the phone this afternoon, I finally was approved for an override and I'm going to pick up the medicine tomorrow and we'll start on Saturday. So unfortunately, I don't have any actual experience with it yet. But back in November, I think, we had some posts regarding this. The peripheral neuropathy has always been a big concern of mine. Dr Lehman, who wrote the book " It's Not Growing Pains: " seems to have the longest history with this drug. He has been a part of many studies. I originally had concernes that he seemed to be a part of all of them, and therefore I questioned the bias of the studies... but, he pointed out several other recent studies in the U.S. and abroad. In all of them, they found that in the few instances of peripheral neuropathy, they were able to reverse by lowering or discontinuing the medication. I'm under the impression now, after the reading, that there hasn't been a case of permanent nerve sensation loss associated with the thalomid for So JRA. Other than the peripheral neuropathy, there were no significant side effects... and from the last study (I seem to think it was from an October Journal....I know Georgina posted it...) no child dropped the drug because of side effects. I can so relate to your fears... we were waiting breathlessly for the MRA trials to start this summer. But now that it will be 2006 before they start, we can't wait and have to try something else. Like you, we don't seem to have extensive options left. I can only pray that this does work.... I would much rather kick myself later for having doubted than be back in this position, trying to find the next step. I'll keep you posted how it goes... and please do the same - no matter what your next step is. Best hopes- Colleen --- jatwilly <jatwilly@...> wrote: > Hi everyone. My name is Jan and I am seeking > information about > Thalidomide. My son is 6 and has had systemic JRA > for 4 years. It > has progressed quite severely and we have been > through most all of the > drugs available and are almost ready to start > Thalidomide, with hopes > to get off or decrease the steroids and control the > inflammation. > > I have read some emails from this list regarding JRA > kids using > Thalidomide. I am interested in hearing from anyone > about the side > effects their JRA kids experience while on > Thalidomide. Specifically, > I am wondering about any numbness or peripheral > neuropathy symptoms. > > I greatly appreciate any feedback...finding mother > to mother sharing > of information often so helpful! Thanks, Jan > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Dear Colleen, Thanks for responding! We are in similar places and it will be helpful to provide information back and forth. Sounds like the peripheral neuropathy side effect, at least permanent ones, is not a problem. Good luck with the start-off; we are weeks behind you in starting the Thalidomide. Are you amenable to corresponding by email directly, or should I go through the list? I will keep you posted. Jan Re: Thalidomide Hi Jan- Nice to meet you! Sounds like we have parallel stories... my daughter is 7 with systemic JRA. July 15 will make 4 years since diagnosis... and like you, we've been through most of the meds. We are just starting Thalidomide. I actually just completed the rather taxing process of getting the prescription filled. Due to the history of the medicine, there is a rather strict registration process guarding it's use. Both the patient and the prescribing doc must register with Celgene. Then, when the doc writes the script, he/she must call and get an auth # from Celgene. Once the # is give, the scipt is good for seven days. When I took it to the pharmacy, they also had to call Celgene for another auth. #. Normally, that would have been it.... but we discovered that my insurance considers that a specialty medication and it must come, therefore, through mail order. After much wrangling on the phone this afternoon, I finally was approved for an override and I'm going to pick up the medicine tomorrow and we'll start on Saturday. So unfortunately, I don't have any actual experience with it yet. But back in November, I think, we had some posts regarding this. The peripheral neuropathy has always been a big concern of mine. Dr Lehman, who wrote the book " It's Not Growing Pains: " seems to have the longest history with this drug. He has been a part of many studies. I originally had concernes that he seemed to be a part of all of them, and therefore I questioned the bias of the studies... but, he pointed out several other recent studies in the U.S. and abroad. In all of them, they found that in the few instances of peripheral neuropathy, they were able to reverse by lowering or discontinuing the medication. I'm under the impression now, after the reading, that there hasn't been a case of permanent nerve sensation loss associated with the thalomid for So JRA. Other than the peripheral neuropathy, there were no significant side effects... and from the last study (I seem to think it was from an October Journal....I know Georgina posted it...) no child dropped the drug because of side effects. I can so relate to your fears... we were waiting breathlessly for the MRA trials to start this summer. But now that it will be 2006 before they start, we can't wait and have to try something else. Like you, we don't seem to have extensive options left. I can only pray that this does work.... I would much rather kick myself later for having doubted than be back in this position, trying to find the next step. I'll keep you posted how it goes... and please do the same - no matter what your next step is. Best hopes- Colleen --- jatwilly <jatwilly@...> wrote: > Hi everyone. My name is Jan and I am seeking > information about > Thalidomide. My son is 6 and has had systemic JRA > for 4 years. It > has progressed quite severely and we have been > through most all of the > drugs available and are almost ready to start > Thalidomide, with hopes > to get off or decrease the steroids and control the > inflammation. > > I have read some emails from this list regarding JRA > kids using > Thalidomide. I am interested in hearing from anyone > about the side > effects their JRA kids experience while on > Thalidomide. Specifically, > I am wondering about any numbness or peripheral > neuropathy symptoms. > > I greatly appreciate any feedback...finding mother > to mother sharing > of information often so helpful! Thanks, Jan > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Hi Jan- Feel free to e-mail me directly anyime... either at this address, or at my other address cryan2 " at " csulb.edu. I see by your repsonse to that our kids have been on many of the same medications. We also tried cyclosporine and cytoxan... without great results. Recently, we have some limited success with IVIG infusions. It's not one of the firts line defenses, and it tends to lose it's effect over time. But we did infusions once a month from December thorugh May and we had great results through about APril. After that, it wasn't worth it anymore for us. But for those few months, inflammation was way down and blood tests were much improved..... So it may be worth some consideration, if you don't want to try the thalidomide. I'll defintely keep you posted on how it goes... I see from that we may have several weeks before any improvement. I see you are in Oregon! My in-laws live in a rural area near Medford and we visit them every summer. We had hoped to move there sometime soon, But I think the only pediatric rheumies are in Portland? And that seems like quite a drive.... Anyway - thanks for connecting and I hope you son improves soon- I'll definitely be in touch. Colleen --- jatwill@... wrote: > Dear Colleen, > > Thanks for responding! We are in similar places and > it will be helpful to provide information back and > forth. Sounds like the peripheral neuropathy side > effect, at least permanent ones, is not a problem. > Good luck with the start-off; we are weeks behind > you in starting the Thalidomide. Are you amenable > to corresponding by email directly, or should I go > through the list? I will keep you posted. Jan > > Re: Thalidomide > > > Hi Jan- > > Nice to meet you! Sounds like we have parallel > stories... my daughter is 7 with systemic JRA. July > 15 will make 4 years since diagnosis... and like > you, > we've been through most of the meds. > > We are just starting Thalidomide. I actually just > completed the rather taxing process of getting the > prescription filled. Due to the history of the > medicine, there is a rather strict registration > process guarding it's use. Both the patient and the > prescribing doc must register with Celgene. Then, > when the doc writes the script, he/she must call and > get an auth # from Celgene. Once the # is give, the > scipt is good for seven days. When I took it to the > pharmacy, they also had to call Celgene for another > auth. #. Normally, that would have been it.... but > we > discovered that my insurance considers that a > specialty medication and it must come, therefore, > through mail order. After much wrangling on the > phone > this afternoon, I finally was approved for an > override > and I'm going to pick up the medicine tomorrow and > we'll start on Saturday. > > So unfortunately, I don't have any actual experience > with it yet. But back in November, I think, we had > some posts regarding this. The peripheral > neuropathy > has always been a big concern of mine. Dr Lehman, > who > wrote the book " It's Not Growing Pains: " seems to > have > the longest history with this drug. He has been a > part of many studies. I originally had concernes > that > he seemed to be a part of all of them, and therefore > I > questioned the bias of the studies... but, he > pointed > out several other recent studies in the U.S. and > abroad. In all of them, they found that in the few > instances of peripheral neuropathy, they were able > to > reverse by lowering or discontinuing the medication. > > I'm under the impression now, after the reading, > that > there hasn't been a case of permanent nerve > sensation > loss associated with the thalomid for So JRA. Other > than the peripheral neuropathy, there were no > significant side effects... and from the last study > (I > seem to think it was from an October Journal....I > know > Georgina posted it...) no child dropped the drug > because of side effects. > > I can so relate to your fears... we were waiting > breathlessly for the MRA trials to start this > summer. > But now that it will be 2006 before they start, we > can't wait and have to try something else. Like > you, > we don't seem to have extensive options left. I can > only pray that this does work.... I would much > rather > kick myself later for having doubted than be back in > this position, trying to find the next step. > > I'll keep you posted how it goes... and please do > the > same - no matter what your next step is. > > Best hopes- > Colleen > --- jatwilly <jatwilly@...> wrote: > > Hi everyone. My name is Jan and I am seeking > > information about > > Thalidomide. My son is 6 and has had systemic JRA > > for 4 years. It > > has progressed quite severely and we have been > > through most all of the > > drugs available and are almost ready to start > > Thalidomide, with hopes > > to get off or decrease the steroids and control > the > > inflammation. > > > > I have read some emails from this list regarding > JRA > > kids using > > Thalidomide. I am interested in hearing from > anyone > > about the side > > effects their JRA kids experience while on > > Thalidomide. Specifically, > > I am wondering about any numbness or peripheral > > neuropathy symptoms. > > > > I greatly appreciate any feedback...finding mother > > to mother sharing > > of information often so helpful! Thanks, Jan > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Hi, My daughter Mackenzie, 7, systemic, has been taking Thalidomide for almost 1 year now and has not had any of the peripheral neuropathy side effects from it. As far as the effectiveness of the drug goes.. thats kind of a coin toss for me. We started it after a major systemic flare and she was on tons of steroids. We have been trying to slowly come down on the steroids for the past year and all was going well till last week when BAM, there it goes again. She had major setback again. She was hospitalized last Wednesday and we got to come home Sunday. We only got down to 30 mg/wk of Decadron which is not really a low dose. We are now going to up the Thalidomide to 150 mg/day and the Decadron back up to 50 mg/wk, she is also on methotrexate and cyclosporin. Maybe the higher dose will start helping. I hope this is helpful to you and I hope all goes well when you start taking the thalidomide. And yes, the procedure for getting the drug is a little crazy, I understand why, but still crazy. As a matter of fact, the hospital had us giving Mackenzie hers from home because it was going to be close to impossible for them to get it through the hospital pharmacy! Take care, Sue and Mackenzie > > > Hi everyone. My name is Jan and I am seeking > > > information about > > > Thalidomide. My son is 6 and has had systemic JRA > > > for 4 years. It > > > has progressed quite severely and we have been > > > through most all of the > > > drugs available and are almost ready to start > > > Thalidomide, with hopes > > > to get off or decrease the steroids and control > > the > > > inflammation. > > > > > > I have read some emails from this list regarding > > JRA > > > kids using > > > Thalidomide. I am interested in hearing from > > anyone > > > about the side > > > effects their JRA kids experience while on > > > Thalidomide. Specifically, > > > I am wondering about any numbness or peripheral > > > neuropathy symptoms. > > > > > > I greatly appreciate any feedback...finding mother > > > to mother sharing > > > of information often so helpful! Thanks, Jan > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Dear Sue, thank you for responding with news about your daughter Mackenzie. I am really sorry she had another bad setback and had to go to the hospital. I hope she starts doing better and that with the Thalidomide, she can get down or off the steroids, (like my son...). Best of luck, Jan Re: Thalidomide Hi, My daughter Mackenzie, 7, systemic, has been taking Thalidomide for almost 1 year now and has not had any of the peripheral neuropathy side effects from it. As far as the effectiveness of the drug goes.. thats kind of a coin toss for me. We started it after a major systemic flare and she was on tons of steroids. We have been trying to slowly come down on the steroids for the past year and all was going well till last week when BAM, there it goes again. She had major setback again. She was hospitalized last Wednesday and we got to come home Sunday. We only got down to 30 mg/wk of Decadron which is not really a low dose. We are now going to up the Thalidomide to 150 mg/day and the Decadron back up to 50 mg/wk, she is also on methotrexate and cyclosporin. Maybe the higher dose will start helping. I hope this is helpful to you and I hope all goes well when you start taking the thalidomide. And yes, the procedure for getting the drug is a little crazy, I understand why, but still crazy. As a matter of fact, the hospital had us giving Mackenzie hers from home because it was going to be close to impossible for them to get it through the hospital pharmacy! Take care, Sue and Mackenzie > > > Hi everyone. My name is Jan and I am seeking > > > information about > > > Thalidomide. My son is 6 and has had systemic JRA > > > for 4 years. It > > > has progressed quite severely and we have been > > > through most all of the > > > drugs available and are almost ready to start > > > Thalidomide, with hopes > > > to get off or decrease the steroids and control > > the > > > inflammation. > > > > > > I have read some emails from this list regarding > > JRA > > > kids using > > > Thalidomide. I am interested in hearing from > > anyone > > > about the side > > > effects their JRA kids experience while on > > > Thalidomide. Specifically, > > > I am wondering about any numbness or peripheral > > > neuropathy symptoms. > > > > > > I greatly appreciate any feedback...finding mother > > > to mother sharing > > > of information often so helpful! Thanks, Jan > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 This was an Eli Lilly product. Michelenevergiveup883 <ynot2@...> wrote: I'm assuming the people on this list have heard of thalidomide but for any that haven't it was a drug that was given to mothers to prevent morning sickness that resulted in many, many babies being born with no arms or legs.The connection was denied or course, but the truth did finally come out.There was a documentary on about this about a month ago (?) and I was only able to catch the last few minutes. What I was able to hear was that not one of the people responsible for this was ever made to pay in any way. I can't help but think that if they had, maybe it would have served as a deterent to those involved in the thimerasol denial/cover up. I think that is why it's important that these people are appropriately punished. Once thimerasol is out in the open, what is next in line?Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 lol that is funny.. in a sad way. Did you know they are using it then, with STRONG warnings against pregnancy. Its being used to cancer and/or AIDS -----Original Message-----From: EOHarm [mailto:EOHarm ]On Behalf Of Michele CrozierSent: Monday, June 20, 2005 6:35 PMEOHarm Subject: Re: thalidomide This was an Eli Lilly product. Michelenevergiveup883 <ynot2@...> wrote: I'm assuming the people on this list have heard of thalidomide but for any that haven't it was a drug that was given to mothers to prevent morning sickness that resulted in many, many babies being born with no arms or legs.The connection was denied or course, but the truth did finally come out.There was a documentary on about this about a month ago (?) and I was only able to catch the last few minutes. What I was able to hear was that not one of the people responsible for this was ever made to pay in any way. I can't help but think that if they had, maybe it would have served as a deterent to those involved in the thimerasol denial/cover up. I think that is why it's important that these people are appropriately punished. Once thimerasol is out in the open, what is next in line?Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2008 Report Share Posted January 10, 2008 Just had my first exam with the gyno-oncologist in about 2 1/2 months. Mixed results; While not better, I am no worse. The cancer has not spread. My alternate treatments have been successful at least in keeping the cancer at bay. It's not advancing substancially. If I was not a LOT better, was going to ask the doc if she could prescribe me a prescription anti-angegenic drug. I'm on paw paw right now. She will. Surprisingly the drug we decided on will be Thalidomide. There is another anti-angeogentic, but it's more expensive and has to be admistered in the oncologist's office by injection. Thalidomide can be taken orally in pill form at night. Of course, it's a very strictly controlled substance due to it's infamous teratogenic effects. Thalidomide is supposed to halt angeogenesis just as it halts the development of a growing embryo. Quote Link to comment Share on other sites More sharing options...
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