Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi, My doctor is now agressively persuiing Medicaid to authorize my Enbrel to 4x a week, 2 and 2. There are some research trials going on now with this amount. The P is trying to come back and the PA is doing nothing but causing me PAIN. Especially in the SPINE. talk about OUCH, right? Wondering if my NSAID needs to be changed too..... My dr was not in today but will be asking for a referral to a rheumy for sure. It is time we get the back looked at.... So, my question is, anyone else on 4 injections a week and what is your experience with that? LeAnn Cayer & Furbrats Blossom & Meriko Heart Bandits American Eskimo Dog Rescue Oklahoma Referral Chapter Railroad Coordinator www.heartbandits.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 In a message dated 8/9/2004 7:37:21 PM Eastern Standard Time, cornth1313@... writes: Guess, I'll have to study those research trials so I can start nagging my insurance and Dr's again. Seems like just once I'd like not have to figure out what I need before my Dr's do. ooops there I go again. What a crab, I AM! Hi Lori, I guess I am in the same boat as you. I am sorry about the basal cell. Hopefully you can take care of that right away and everything will be fine. My rheumy was giving me a hard time also about doubling the Enbrel because of insurance. but my derm is a teaching doctor in NYC and he is all for it. He may be starting a trial in his office on the double dose. He also said that it is helping about 50% of the people that the regular dose did not help. So as for vitamin C, where did your doctor get this????? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 " Pitty Pot " readers be forewarned. I recently asked my rhuemy about going to 4 injections of enbrel a week. He wants to take me off mtx completely, over a period of time, which is what I wanted also... But I'm afraid the enbrel isn't going to 'cut it' by itself. One of the reasons I was told to stay on combination therapy with mtx was... Because, " the mtx would help me to keep from building up antibodies to the enbrel. " <sigh> My rhuemy said, that it doesn't matter how much enbrel you take after a certain point, that it's like vitamin C and your body will just throw off the rest. <not sure on that one either>. One thing we did both agree on was that my insurance would freak if we tried to put in for a double dose. Yesterday, was not a good day for me: overtired, angry at my car keys and doors and the ice cream scoop and the extra heavy front door and scared it will all start over again after doing so well, since my first shot of enbrel in March. *here is usually where the loved ones remind me I could hardly get out of bed 6 months ago. Which is why you all are getting an ear full. <smirk> I can't complain,but sometimes I still do. Found out I have basal cell skin cancer on the back of my arm which will need surgery, no biggie, but dang it all, I want the full remission and no problems. It's always something and I guess that just makes me tired. I could go on for hours and hours about how crappy 'it' all is. But, as I write even this much, I feel silly for complaining. My first symptoms started at 12 years of age and I'm 44 now. I'm doing pretty good for a Grandma and 'most of the time' I'm not too unhappy and I don't yell at the ice cream scoop. I really am grateful, really, er...well I will be 'again' soon. Guess, I'll have to study those research trials so I can start nagging my insurance and Dr's again. Seems like just once I'd like not have to figure out what I need before my Dr's do. ooops there I go again. What a crab, I AM! Lori -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 I am on Enbrel and was under the impression that you should not use Enbrel with any kind of existing cancer? [ ] Re: Enbrel anybody on 4 inj wk? > " Pitty Pot " readers be forewarned. > > I recently asked my rhuemy about going to 4 injections of enbrel a > week. He wants to take me off mtx completely, over a period of time, > which is what I wanted also... But I'm afraid the enbrel isn't going > to 'cut it' by itself. One of the reasons I was told to stay on > combination therapy with mtx was... Because, " the mtx would help me > to keep from building up antibodies to the enbrel. " <sigh> > > My rhuemy said, that it doesn't matter how much enbrel you take after > a certain point, that it's like vitamin C and your body will just > throw off the rest. <not sure on that one either>. One thing we did > both agree on was that my insurance would freak if we tried to put in > for a double dose. > > Yesterday, was not a good day for me: overtired, angry at my car > keys and doors and the ice cream scoop and the extra heavy front door > and scared it will all start over again after doing so well, since my > first shot of enbrel in March. *here is usually where the loved ones > remind me I could hardly get out of bed 6 months ago. Which is why > you all are getting an ear full. <smirk> I can't complain,but > sometimes I still do. > > Found out I have basal cell skin cancer on the back of my arm which > will need surgery, no biggie, but dang it all, I want the full > remission and no problems. It's always something and I guess that > just makes me tired. I could go on for hours and hours about how > crappy 'it' all is. But, as I write even this much, I feel silly for > complaining. My first symptoms started at 12 years of age and I'm 44 > now. I'm doing pretty good for a Grandma and 'most of the time' I'm > not too unhappy and I don't yell at the ice cream scoop. I really am > grateful, really, er...well I will be 'again' soon. > > Guess, I'll have to study those research trials so I can start > nagging my insurance and Dr's again. Seems like just once I'd like > not have to figure out what I need before my Dr's do. ooops there I > go again. What a crab, I AM! > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Lori, " crabbing " and taking a turn on the pitty pot are perfectly fine. We all have experienced your feelings. I have composed posts, and by the time I finish typing, I just delete it because, just typing it out makes me feel better. So even though you hit " send " , it's fine. Sometimes just putting thoughts down helps me to recognize what I really feel. Stay Well, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 I ran accross this information on Enbrel, don't know if you have seen it or not. Most doctors don't tell you everything about the drugs they want us to take. If it was me, I'd think twice about Enbrel, but if I had to take it, I would want ALL the facts. http://www.fda.gov/bbs/topics/ANSWERS/ANS00954.html Sorry if I'm sticking my nose where it don't belong, I just thought I'd share this site I found...Be carefull out there...Carl > " Pitty Pot " readers be forewarned. > > I recently asked my rhuemy about going to 4 injections of enbrel a > week. He wants to take me off mtx completely, over a period of time, > which is what I wanted also... But I'm afraid the enbrel isn't going > to 'cut it' by itself. One of the reasons I was told to stay on > combination therapy with mtx was... Because, " the mtx would help me > to keep from building up antibodies to the enbrel. " <sigh> > > My rhuemy said, that it doesn't matter how much enbrel you take after > a certain point, that it's like vitamin C and your body will just > throw off the rest. <not sure on that one either>. One thing we did > both agree on was that my insurance would freak if we tried to put in > for a double dose. > > Yesterday, was not a good day for me: overtired, angry at my car > keys and doors and the ice cream scoop and the extra heavy front door > and scared it will all start over again after doing so well, since my > first shot of enbrel in March. *here is usually where the loved ones > remind me I could hardly get out of bed 6 months ago. Which is why > you all are getting an ear full. <smirk> I can't complain,but > sometimes I still do. > > Found out I have basal cell skin cancer on the back of my arm which > will need surgery, no biggie, but dang it all, I want the full > remission and no problems. It's always something and I guess that > just makes me tired. I could go on for hours and hours about how > crappy 'it' all is. But, as I write even this much, I feel silly for > complaining. My first symptoms started at 12 years of age and I'm 44 > now. I'm doing pretty good for a Grandma and 'most of the time' I'm > not too unhappy and I don't yell at the ice cream scoop. I really am > grateful, really, er...well I will be 'again' soon. > > Guess, I'll have to study those research trials so I can start > nagging my insurance and Dr's again. Seems like just once I'd like > not have to figure out what I need before my Dr's do. ooops there I > go again. What a crab, I AM! > > Lori > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 If you notice that information is from 1999. This is no secret and is prominently stated on the package insert, even stated in the new TV commercials for Enbrel. All powerful drugs have the potential of severe side effects in some people. Most of the problems with Enbrel have been associated with other co-existing chronic disease or a pre- existing chronic infection. That's why a competent RD will give you a TB test and al lot of blood work to rule out any chronic infection before you start. Enbrel has been a miracle drug for many of us with minimal side effects. Remember, if Aspirin was discovered in this era it would be a prescription drug with lots of warnings, reported deaths, and syndromes. Maybe as many as Enbrel and probably a class action law suite to boot. I am not saying that a person should not be as informed as possible about their treatment options. I am saying that you have to balance risk with benefit and not scare yourself away from a potentially beneficial treatment because of hyperbole or exaggeration. No risk, no gain and the risk is totally justifiable. The alternative may be to sit and suffer. Personally I believe Enbrel is much safer and tolerable than MTX as well as astoundingly more effective. After 4 years on and off Enbrel, I now only do one Enbrel injection a week and no other medications for PA except maybe an occasional Viox. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 In a message dated 8/10/04 12:37:07 AM GMT Daylight Time, cornth1313@... writes: Yesterday, was not a good day for me: overtired, angry at my car keys and doors and the ice cream scoop and the extra heavy front door and scared it will all start over again after doing so well, since my first shot of enbrel in March Hi Lori, I know what you mean. All sorts of inanimate objects have been cursed and swore at by me. Even the clothes I am wearing gets it sometimes if I catch a finger or thumb on something. See what happens? It starts off as skin/bone/muscle disease and ends up driving us mad. Lol Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi Lori, We've all got a case of the crabs here now and then, LOL. Hope by now the ice cream scoop is your friend again. Wishing you wellness, Kathy F. " Pitty Pot " readers be forewarned. I recently asked my rhuemy about going to 4 injections of enbrel a week. He wants to take me off mtx completely, over a period of time, which is what I wanted also... But I'm afraid the enbrel isn't going to 'cut it' by itself. One of the reasons I was told to stay on combination therapy with mtx was... Because, " the mtx would help me to keep from building up antibodies to the enbrel. " <sigh> My rhuemy said, that it doesn't matter how much enbrel you take after a certain point, that it's like vitamin C and your body will just throw off the rest. <not sure on that one either>. One thing we did both agree on was that my insurance would freak if we tried to put in for a double dose. Yesterday, was not a good day for me: overtired, angry at my car keys and doors and the ice cream scoop and the extra heavy front door and scared it will all start over again after doing so well, since my first shot of enbrel in March. *here is usually where the loved ones remind me I could hardly get out of bed 6 months ago. Which is why you all are getting an ear full. <smirk> I can't complain,but sometimes I still do. Found out I have basal cell skin cancer on the back of my arm which will need surgery, no biggie, but dang it all, I want the full remission and no problems. It's always something and I guess that just makes me tired. I could go on for hours and hours about how crappy 'it' all is. But, as I write even this much, I feel silly for complaining. My first symptoms started at 12 years of age and I'm 44 now. I'm doing pretty good for a Grandma and 'most of the time' I'm not too unhappy and I don't yell at the ice cream scoop. I really am grateful, really, er...well I will be 'again' soon. Guess, I'll have to study those research trials so I can start nagging my insurance and Dr's again. Seems like just once I'd like not have to figure out what I need before my Dr's do. ooops there I go again. What a crab, I AM! Lori Quote Link to comment Share on other sites More sharing options...
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