Guest guest Posted January 4, 1980 Report Share Posted January 4, 1980 Hi ...Your day at the Dr must have felt like finding out you have breast cancer. Just reading your post made my stomach go into knots. Especially since I have evaluated, read and disected the AP program for 8 months before I went on it. I have been on 100mg doxy(daily) for 2 weeks now. Besides the usual load of minerals and vitamins I am only taking prednisone 10mg(daily). Since RA(2/01) these are the only meds for RA I have been on. What treatment(s) have you been on prior to AP? Hopefully some of you out there will be able to give us a better understanding and piece of mind on how you have been sucessful on AP, that AP was not the cause of your joint damage. Aloha, Viola rheumatic joint damage > Group, > I went to the orthopedic surgeon today about surgery on the bunionette. I > today saw for myself about what he meant by how I looked better on the > outside than the inside. > > I cannot believe the damage I have sustained while on the AP. When I > started the AP , I only had one toe on my right foot that showed damage. > Now EVERY toe on that foot is damaged and my toe is destroyed. > > I was told over and over that damage could not occur on the AP. I am only > telling you that is can and rapidly. I have had further destruction since > just last January. > > I like the AP and plan to stay with it but I have got to slow this damage > down. It took my breath looking at the Xray. > > I would like to know the side effects and benefits that others have had on > mtx, remicade, and enbrel. Just personal experiences as I understand the > complications that can occur and the warnings that go with it. > > When I started doxi and my labs went so high and I was so sick, I should > have known that this was going on. Everyone, keep checking those xrays. > > Just a word of warning. > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 , Just to make sure... you didnt just go on Ap and stop all measures for reducing inflammation right? If anythig you at first may need to increase the measures natural or otherwise to reduce inflammation because of the Herx. Just an FYI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Group, I went to the orthopedic surgeon today about surgery on the bunionette. I today saw for myself about what he meant by how I looked better on the outside than the inside. I cannot believe the damage I have sustained while on the AP. When I started the AP , I only had one toe on my right foot that showed damage. Now EVERY toe on that foot is damaged and my toe is destroyed. I was told over and over that damage could not occur on the AP. I am only telling you that is can and rapidly. I have had further destruction since just last January. I like the AP and plan to stay with it but I have got to slow this damage down. It took my breath looking at the Xray. I would like to know the side effects and benefits that others have had on mtx, remicade, and enbrel. Just personal experiences as I understand the complications that can occur and the warnings that go with it. When I started doxi and my labs went so high and I was so sick, I should have known that this was going on. Everyone, keep checking those xrays. Just a word of warning. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 ....also, (my two cents worth (mtcw) ) is the diet factor. As I go along on the AP, I've become convinced that radical changes must be made nutritionally. The junk food has to go, the living foods, ones that rebuild our immune systems have to be the fundamentals in our everday eating patterns.. Fruits and vegees, grains and legumes, all the good stuff. This is my viewpoint, and in my own situation, each day I become more and more sure that I won't get well without these changes in my diet. On Friday, May 31, 2002, at 11:23 AM, seaintuit@... wrote: > , > Just to make sure... you didnt just go on Ap and stop all measures for > reducing inflammation right? If anythig you at first may need to > increase the measures natural or otherwise to reduce inflammation > because of the Herx. Just an FYI. > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 on 5/31/02 4:09 PM, King at lindaking@... wrote: > ...also, (my two cents worth (mtcw) ) is the diet factor. As I go along > on the AP, I've become convinced that radical changes must be made > nutritionally. The junk food has to go, the living foods, ones that > rebuild our immune systems have to be the fundamentals in our everday > eating patterns.. Fruits and vegees, grains and legumes, all the good > stuff. This is my viewpoint, and in my own situation, each day I become > more and more sure that I won't get well without these changes in my > diet. > > > > > > On Friday, May 31, 2002, at 11:23 AM, seaintuit@... wrote: > >> , >> Just to make sure... you didnt just go on Ap and stop all measures for >> reducing inflammation right? If anythig you at first may need to >> increase the measures natural or otherwise to reduce inflammation >> because of the Herx. Just an FYI. >> >> To unsubscribe, email: rheumatic-unsubscribeegroups >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Just to balance 's commentary, after 11 years of gold injections and especially 7 years of methotrexate, I had major damage to most of my joints and required replacement and fusion surgeries. The official scale used to determine the effectiveness of drugs in RA does not show a high success rate for any of them. Enbrel seems to be at the top of the list for actually slowing or controlling damage to joints. I was on it this year for 6 weeks but had to stop due to developing a cough which was not good for my neck fusion surgery and was also a possible sign of infection according to my rheumatologist. There are no easy answers, are there? (RA 25+ years, AP since Nov. 97) rheumatic joint damage > Group, > I went to the orthopedic surgeon today about surgery on the bunionette. I > today saw for myself about what he meant by how I looked better on the > outside than the inside. > > I cannot believe the damage I have sustained while on the AP. When I > started the AP , I only had one toe on my right foot that showed damage. > Now EVERY toe on that foot is damaged and my toe is destroyed. > > I was told over and over that damage could not occur on the AP. I am only > telling you that is can and rapidly. I have had further destruction since > just last January. > > I like the AP and plan to stay with it but I have got to slow this damage > down. It took my breath looking at the Xray. > > I would like to know the side effects and benefits that others have had on > mtx, remicade, and enbrel. Just personal experiences as I understand the > complications that can occur and the warnings that go with it. > > When I started doxi and my labs went so high and I was so sick, I should > have known that this was going on. Everyone, keep checking those xrays. > > Just a word of warning. > > > > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi Lesile and Viola, I am sorry Lesile you have further joint damage, every case is different, but how long on the AP?? I am sure it is me who forgot, but it could be it hasn't really done the job of winning yet. Perhaps something else should be added with the AP. I never got any damage except my one toe twisted and that was yrs ago. At that time I was on 70mg of prednisone aday and their ansaids. Today I take nothing but my Doxy and vitiams and MSM and the usual stuff we all take and Diet. When I started 15 yrs ago I was put on plain tetracycline and staed on this for almost 12 yrs. I changed to Doxy as I was afraid the tetracycline was giveing me some skin Lupus stuff. I am not haveing any problems, but I do wonder if these drugs are all the same and maybe plain Tetracycline works better on some people and maybe the others need different. Just something to think about if your AP isn't working like it should. Dr. Brown used I THINK just tetracycline for some time. Anyway it worked for me the doxy is my maintance dose. I hope this may help some of you out here, as I am one of the sucess stories. The Best and this is just my View. Are we sure the drug companies are keeping these drugs as good as plain Tetracycline??? Yes they should be but are they. Sorry my faith in AMA is some lacking. from Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Very well said Geoff. Personally, even though I had read that all DMARDS should be stopped and a rest period taken before starting AP, I didn't. I was going to stop them, then learned it was unwise to do so abruptly. I did stop the Remicade as it was causing me severe problems. However, I was still on MTX injections and prednisone when I started on doxycycline. (Only thing my rheumie would agree to prescribing). I still take the MTX and pred, and will very slowly wean off of them, but not yet. I am noticing that after adding the doxy for over a month now, I don't have the severe stiffness of a morning, can move about more easily much sooner in the day now, and have more energy. Part of that is probably the addition of B-12 and B-6 which I did before starting the antibiotic. I've also had other improvements. I've also changed a lot of the foods I eat, particularly the oils. The whole family feels much better using the coconut oil rather than canola, which I used before. As you say, it's all individual. I've read that MTX stays in the body longer and builds up if you use folic acid at the same time. This can cause liver toxicity problems. However, after speaking to a pharmacist about this he says the folic acid is a good thing to use to prevent anemia with MTX and since I inject it subcutaneously, I bypass this issue. It's only with the oral MTX that it can be a problem. So most importantly, keep track of what works for you, discuss it with your doctor, and most importantly discuss things with your pharmacist. They are the key in understanding the chemical interactions of drugs and be sure to tell him what over the counter supplements or medicines you take also as it's all part of the stew. I find my pharmacist to be a very valuable asset. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Holly...One of the nicest things about AP is that you can remain on most meds until the AP kicks in where you are comfortable getting off them. For some people that may be a couple of years...for others a few months. I stayed on both prednisone and plaquenil when I first started, slowly decreasing my dosage as I started feeling better. Talk to your doc about this as I for one certainly would not go cold turkey off my other meds until the AP had a chance to work. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 In a message dated 4/28/2004 12:02:46 PM Eastern Standard Time, mholmes@... writes: Where did you read that oral MTX builds up in your system while taking folic acid? I'm not sure where I read it as I can't find the website right now. However, the pharmacist confirmed this is true. At the same time, the low dosage given for RA should not be problematic he said. And also, as I said before, injections bypass the liver. Boy it does get confusing! <<My understanding is that MTX is a folic acid antagonist and will deplete stores of folic acid>> Yes it's true, but if you overdo the folic acid you run the risk of having low B-12. Vicious circle. Here's a link to a good article on MTX and folate.Facts About Folate or http://www.cc.nih.gov/ccc/supplements/folate.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 > > As you say, it's all individual. I've read that MTX stays in the body longer > and builds up if you use folic acid at the same time. This can cause liver > toxicity problems. However, after speaking to a pharmacist about this he says > the folic acid is a good thing to use to prevent anemia with MTX and since I > inject it subcutaneously, I bypass this issue. It's only with the oral MTX > that it can be a problem. Jill, Where did you read that oral MTX builds up in your system while taking folic acid? My understanding is that MTX is a folic acid antagonist and will deplete stores of folic acid, thus the necessity to take at least 1,000 mcg per day of folic acid (which per some doctors is still too low). It is also necessary to avoid mouth sores,etc which can be side effects of metho (I've never had any side effects, probably due to the fact that I have religiously taken my folic acid). Just curious. Mark Quote Link to comment Share on other sites More sharing options...
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