Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 I was diagnosed with CD about 3 weeks ago and have been on prednisone (30mg)ever since. When I was diagnosed, my Dr. said I had the worst case of CD he'd seen that year and immediately started telling me about some " wonderful " new drugs, Remicade and Humira. He also asked if I'd want to participate in a clinical study of a drug not yet approved (NO!). Since I wanted to get off the steroids and didn't like the thought of infusions, I opted for Humira. Then I did a ton of research and found the SCD. After some false starts, I have been on the diet 3 days. I didn't have any D, even when I was in the flair, but just cramping. I am feeling fine and am on 20mg prednisone. I want to continue the diet and not take the Humira, but it is being delivered to my house on Tuesday and I am supposed to go for training (and I assume an injection) on Wednesday. I have an appointment with one of the SCD friendly Drs listed on the website for a second opinion, but it is not until July. Sorry to be so wordy; my question is, do I have a choice? Can I ask to stay on prednisone and delay the Humira? My Dr. had never heard of the SCD, but after reading the blurb about it on the CCFA website (which was not accurate!), he said it sounded like it could be dangerous & did not even support my trying it. I don't know what to do... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Hi, far be it from me to advise you and I am a newcomer to this list and to the diet, which I'm using for my son who has autism, so please take this in context, ie. I'm no expert. However, I can tell you that my uncle had some very serious, irreversible neurological side effects from Humira, so I believe you need to make this decision very carefully, taking all your research into consideration. Speaking from personal experience, don't let anyone pressure you into something that doesn't feel right. If you are free of cramping on the diet so far, and prednisone at a low dose is OK so far, what would be lost by postponing the Humira for a while until you find out if the diet can help? Best of luck sorting this out. amindyt wrote: I was diagnosed with CD about 3 weeks ago and have been on prednisone (30mg)ever since. When I was diagnosed, my Dr. said I had the worst case of CD he'd seen that year and immediately started telling me about some " wonderful " new drugs, Remicade and Humira. He also asked if I'd want to participate in a clinical study of a drug not yet approved (NO!). Since I wanted to get off the steroids and didn't like the thought of infusions, I opted for Humira. Then I did a ton of research and found the SCD. After some false starts, I have been on the diet 3 days. I didn't have any D, even when I was in the flair, but just cramping. I am feeling fine and am on 20mg prednisone. I want to continue the diet and not take the Humira, but it is being delivered to my house on Tuesday and I am supposed to go for training (and I assume an injection) on Wednesday. I have an appointment with one of the SCD friendly Drs listed on the website for a second opinion, but it is not until July. Sorry to be so wordy; my question is, do I have a choice? Can I ask to stay on prednisone and delay the Humira? My Dr. had never heard of the SCD, but after reading the blurb about it on the CCFA website (which was not accurate!), he said it sounded like it could be dangerous & did not even support my trying it. I don't know what to do... --------------------------------- Give spam the boot. Take control with tough spam protection in the all-new Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 As a matter of law- No Dr. can force you to take meds. You can ask to take the prednisone longer, but he may not consider it safe or proper- This is his perogative, but you do not have to take the Humira if you don't want to. SO just hold off on th eHumira if worse comes to worse. --- amindyt wrote: > I was diagnosed with CD about 3 weeks ago and have > been on > prednisone (30mg)ever since. When I was diagnosed, > my Dr. said I had > the worst case of CD he'd seen that year and > immediately started > telling me about some " wonderful " new drugs, > Remicade and Humira. He > also asked if I'd want to participate in a clinical > study of a drug > not yet approved (NO!). Since I wanted to get off > the steroids and > didn't like the thought of infusions, I opted for > Humira. Then I did > a ton of research and found the SCD. After some > false starts, I have > been on the diet 3 days. I didn't have any D, even > when I was in the > flair, but just cramping. I am feeling fine and am > on 20mg > prednisone. I want to continue the diet and not take > the Humira, but > it is being delivered to my house on Tuesday and I > am supposed to go > for training (and I assume an injection) on > Wednesday. I have an > appointment with one of the SCD friendly Drs listed > on the website > for a second opinion, but it is not until July. > Sorry to be so > wordy; my question is, do I have a choice? Can I ask > to stay on > prednisone and delay the Humira? My Dr. had never > heard of the SCD, > but after reading the blurb about it on the CCFA > website (which was > not accurate!), he said it sounded like it could be > dangerous & did > not even support my trying it. I don't know what to > do... > > ________________________________________________________________________________\ ____Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search http://search.yahoo.com/search?fr=oni_on_mail&p=graduation+gifts&cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 It's just my opinion, but there were no longer any meds for me to take that helped my crohns and to avoid a second surgery I decided to become a guinea pig and do study drugs. Leukine and Humira were two such drugs. Although I heard through my Drs. that there were many successful cases with the Humira, it failed terribly for me and caused me so many problems it wasn't even funny. I was a failure on both those studies, wound up in the hospital after each one made me worse, was scheduled for what I thought would have been my third and final change at a study drug before ultimately surgery but then the testing they did showed that I contracted C'Diff in the hospital after the 2nd study drug ended me back in there. After going through the " why me's " , getting hysterical and then angry at this darn disease I found myself a wonderful holistic Dr. who not only kept me off of study drugs, but kept me pain free for almost another year before I ultimately needed a second surgery this past summer. I personally would never again do a study drug and YES you have the right to say NO to whatever doesn't feel right to you. It is your body and the doctors can only advise you. Good luck. Luann From: pecanbread [mailto:pecanbread ] On Behalf Of L. T Sent: Monday, May 14, 2007 4:29 PM To: pecanbread Subject: Re: Can I say no to meds? As a matter of law- No Dr. can force you to take meds. You can ask to take the prednisone longer, but he may not consider it safe or proper- This is his perogative, but you do not have to take the Humira if you don't want to. SO just hold off on th eHumira if worse comes to worse. --- amindyt <amindyt@... <mailto:amindyt%40yahoo.com> > wrote: > I was diagnosed with CD about 3 weeks ago and have > been on > prednisone (30mg)ever since. When I was diagnosed, > my Dr. said I had > the worst case of CD he'd seen that year and > immediately started > telling me about some " wonderful " new drugs, > Remicade and Humira. He > also asked if I'd want to participate in a clinical > study of a drug > not yet approved (NO!). Since I wanted to get off > the steroids and > didn't like the thought of infusions, I opted for > Humira. Then I did > a ton of research and found the SCD. After some > false starts, I have > been on the diet 3 days. I didn't have any D, even > when I was in the > flair, but just cramping. I am feeling fine and am > on 20mg > prednisone. I want to continue the diet and not take > the Humira, but > it is being delivered to my house on Tuesday and I > am supposed to go > for training (and I assume an injection) on > Wednesday. I have an > appointment with one of the SCD friendly Drs listed > on the website > for a second opinion, but it is not until July. > Sorry to be so > wordy; my question is, do I have a choice? Can I ask > to stay on > prednisone and delay the Humira? My Dr. had never > heard of the SCD, > but after reading the blurb about it on the CCFA > website (which was > not accurate!), he said it sounded like it could be > dangerous & did > not even support my trying it. I don't know what to > do... > > __________________________________________________________Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search http://search.yahoo.com/search?fr=oni_on_mail <http://search.yahoo.com/search?fr=oni_on_mail&p=graduation+gifts&cs=bz> &p=graduation+gifts&cs=bz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 > . However, I can tell you that my uncle had some very serious, > irreversible neurological side effects from Humira, Could you tell more about what the nuerological side effects are? My doctor is pushing this drug as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 My uncle has a rare degenerative neurological disorder, can't remember the name, that affects his balance, ability to walk, memory,and the whole gamut, and it is progressive. I believe it is rare, but still.... I would look up the side effects on the internet. Debora Wade wrote: > . However, I can tell you that my uncle had some very serious, > irreversible neurological side effects from Humira, Could you tell more about what the nuerological side effects are? My doctor is pushing this drug as well. --------------------------------- Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 I have been quiet on this issue, because I think everyone needs to make their own decision after talking with their doctor and doing their own research. I have been on Humira for about a year now, and it has had an enormous beneficial impact on my psoriatic arthritis -- much more significant than diet or a list of other meds I tried before Humira. I If you google Humira, you will find that it (like most other medications) has potentially serious side effects. Balancing those potential risks against the very real benefits I have received, I would not want to have to do without it. > > > > . However, I can tell you that my uncle had some very serious, > > irreversible neurological side effects from Humira, > > Could you tell more about what the nuerological side effects are? My > doctor is pushing this drug as well. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 We noticed changes from the diet within the first 2-3 weeks of starting. I don't see why you couldn't wait a few weeks to give the diet a chance to work. It would be hard to tell what is working if you started the Humira and the diet at the same time. My son is 9 and is on the diet for CD. Good Luck, Jill and Ethan amindyt wrote: I was diagnosed with CD about 3 weeks ago and have been on prednisone (30mg)ever since. When I was diagnosed, my Dr. said I had the worst case of CD he'd seen that year and immediately started telling me about some " wonderful " new drugs, Remicade and Humira. He also asked if I'd want to participate in a clinical study of a drug not yet approved (NO!). Since I wanted to get off the steroids and didn't like the thought of infusions, I opted for Humira. Then I did a ton of research and found the SCD. After some false starts, I have been on the diet 3 days. I didn't have any D, even when I was in the flair, but just cramping. I am feeling fine and am on 20mg prednisone. I want to continue the diet and not take the Humira, but it is being delivered to my house on Tuesday and I am supposed to go for training (and I assume an injection) on Wednesday. I have an appointment with one of the SCD friendly Drs listed on the website for a second opinion, but it is not until July. Sorry to be so wordy; my question is, do I have a choice? Can I ask to stay on prednisone and delay the Humira? My Dr. had never heard of the SCD, but after reading the blurb about it on the CCFA website (which was not accurate!), he said it sounded like it could be dangerous & did not even support my trying it. I don't know what to do... --------------------------------- Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 a girl I know was recently told simlar things --and she was upset b/c she is breastfeeding twins and was told that she wouldn't be able to do that anymore. --so took milk and most wheat out of her diet right away and is already feeling better. Personally I would tell that doc to kiss my butt and would start the diet immediately. --and I would find a new doctor. --one that doesn't LISTEN to you should be fired. > We noticed changes from the diet within the first 2-3 weeks of starting. I don't see why you couldn't wait a few weeks to give the diet a chance to work. It would be hard to tell what is working if you started the Humira and the diet at the same time. My son is 9 and is on the diet for CD. Good Luck, > Jill and Ethan > > amindyt wrote: > I was diagnosed with CD about 3 weeks ago and have been on > prednisone (30mg)ever since. When I was diagnosed, my Dr. said I had > the worst case of CD he'd seen that year and immediately started > telling me about some " wonderful " new drugs, Remicade and Humira. He > also asked if I'd want to participate in a clinical study of a drug > not yet approved (NO!). Since I wanted to get off the steroids and > didn't like the thought of infusions, I opted for Humira. Then I did > a ton of research and found the SCD. After some false starts, I have > been on the diet 3 days. I didn't have any D, even when I was in the > flair, but just cramping. I am feeling fine and am on 20mg > prednisone. I want to continue the diet and not take the Humira, but > it is being delivered to my house on Tuesday and I am supposed to go > for training (and I assume an injection) on Wednesday. I have an > appointment with one of the SCD friendly Drs listed on the website > for a second opinion, but it is not until July. Sorry to be so > wordy; my question is, do I have a choice? Can I ask to stay on > prednisone and delay the Humira? My Dr. had never heard of the SCD, > but after reading the blurb about it on the CCFA website (which was > not accurate!), he said it sounded like it could be dangerous & did > not even support my trying it. I don't know what to do... > > > > > > > --------------------------------- > Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2007 Report Share Posted May 17, 2007 Thank you all so much for the feedback! I called my insurance co. and told them to hold off on sending the Humira, and then emailed my Dr. that I really really did not want to go to the biological drugs before trying Pentasa and Entocort. This time he said ok (maybe because I made an appointment with his colleague for a second opinion?!) and I started these drugs today. I am following the diet and have faith that it will work. Again, thank you so much. > > I was diagnosed with CD about 3 weeks ago and have been on > > prednisone (30mg)ever since. When I was diagnosed, my Dr. said I had > > the worst case of CD he'd seen that year and immediately started > > telling me about some " wonderful " new drugs, Remicade and Humira. He > > also asked if I'd want to participate in a clinical study of a drug > > not yet approved (NO!). Since I wanted to get off the steroids and > > didn't like the thought of infusions, I opted for Humira. Then I did > > a ton of research and found the SCD. After some false starts, I have > > been on the diet 3 days. I didn't have any D, even when I was in the > > flair, but just cramping. I am feeling fine and am on 20mg > > prednisone. I want to continue the diet and not take the Humira, but > > it is being delivered to my house on Tuesday and I am supposed to go > > for training (and I assume an injection) on Wednesday. I have an > > appointment with one of the SCD friendly Drs listed on the website > > for a second opinion, but it is not until July. Sorry to be so > > wordy; my question is, do I have a choice? Can I ask to stay on > > prednisone and delay the Humira? My Dr. had never heard of the SCD, > > but after reading the blurb about it on the CCFA website (which was > > not accurate!), he said it sounded like it could be dangerous & did > > not even support my trying it. I don't know what to do... > > > > > > > > > > > > > > --------------------------------- > > Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. > > > > Quote Link to comment Share on other sites More sharing options...
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