Guest guest Report post Posted October 16, 2001 Thats Bullshit, Pat that kind of treatment I see it firsthand with what is happeneing to me. I am embarresed when people ask me if I had work for the Government. I say yes but not with any of that. I worked in Public Works Engineering Design. Guess I should have saved some money. Well I didn't and here I am......TA DAH Take care, Connie __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 16, 2001 Thanks for grounding me Claudine! When I re-read your email, I did then notice that it is very rare. I guess with so much info coming basically within a few months...I tend to over-react. Actually, come to think of it, I tend to overreact on EVERYthing ;-} So I am thankful that you caught that and grounded me. I need that every so often lol, so appreciate it when you catch me doing it. Then I can sit back and say to myself " ahhhhhh you did it again " . LOL You are now my official grounder, if that's ok with you. Hugggggggs Carol claudine intexas wrote: > > --- Carol <csean@...> wrote: > I had no idea that this is > > another thing I will > > have to look for if and when I start treatment. > > Just remember, things like this are very unusual! They > DON'T happen to most people! You have to watch out or > you start blaming every little thing on either the > HCV, or treatment, if you are on it, and completely > overlook more likely reasons for problems. > Claudine > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 16, 2001 Thanks for grounding me Claudine! When I re-read your email, I did then notice that it is very rare. I guess with so much info coming basically within a few months...I tend to over-react. Actually, come to think of it, I tend to overreact on EVERYthing ;-} So I am thankful that you caught that and grounded me. I need that every so often lol, so appreciate it when you catch me doing it. Then I can sit back and say to myself " ahhhhhh you did it again " . LOL You are now my official grounder, if that's ok with you. Hugggggggs Carol claudine intexas wrote: > > --- Carol <csean@...> wrote: > I had no idea that this is > > another thing I will > > have to look for if and when I start treatment. > > Just remember, things like this are very unusual! They > DON'T happen to most people! You have to watch out or > you start blaming every little thing on either the > HCV, or treatment, if you are on it, and completely > overlook more likely reasons for problems. > Claudine > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 16, 2001 Thanks for grounding me Claudine! When I re-read your email, I did then notice that it is very rare. I guess with so much info coming basically within a few months...I tend to over-react. Actually, come to think of it, I tend to overreact on EVERYthing ;-} So I am thankful that you caught that and grounded me. I need that every so often lol, so appreciate it when you catch me doing it. Then I can sit back and say to myself " ahhhhhh you did it again " . LOL You are now my official grounder, if that's ok with you. Hugggggggs Carol claudine intexas wrote: > > --- Carol <csean@...> wrote: > I had no idea that this is > > another thing I will > > have to look for if and when I start treatment. > > Just remember, things like this are very unusual! They > DON'T happen to most people! You have to watch out or > you start blaming every little thing on either the > HCV, or treatment, if you are on it, and completely > overlook more likely reasons for problems. > Claudine > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 16, 2001 Thanks for grounding me Claudine! When I re-read your email, I did then notice that it is very rare. I guess with so much info coming basically within a few months...I tend to over-react. Actually, come to think of it, I tend to overreact on EVERYthing ;-} So I am thankful that you caught that and grounded me. I need that every so often lol, so appreciate it when you catch me doing it. Then I can sit back and say to myself " ahhhhhh you did it again " . LOL You are now my official grounder, if that's ok with you. Hugggggggs Carol claudine intexas wrote: > > --- Carol <csean@...> wrote: > I had no idea that this is > > another thing I will > > have to look for if and when I start treatment. > > Just remember, things like this are very unusual! They > DON'T happen to most people! You have to watch out or > you start blaming every little thing on either the > HCV, or treatment, if you are on it, and completely > overlook more likely reasons for problems. > Claudine > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2001 If I'm a 'grounder' now, it's only because I used to be 'flyer', or whatever the opposite would be! It's just having had more time to learn and get used to all this, experience. And yes, that is plenty of experience overreacting myself! We all do it, I still will do it too. We all need each other. (You know it's MUCH easier to catch someone else overreacting than it is to catch yourself!) Claudine __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2001 If I'm a 'grounder' now, it's only because I used to be 'flyer', or whatever the opposite would be! It's just having had more time to learn and get used to all this, experience. And yes, that is plenty of experience overreacting myself! We all do it, I still will do it too. We all need each other. (You know it's MUCH easier to catch someone else overreacting than it is to catch yourself!) Claudine __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2001 If I'm a 'grounder' now, it's only because I used to be 'flyer', or whatever the opposite would be! It's just having had more time to learn and get used to all this, experience. And yes, that is plenty of experience overreacting myself! We all do it, I still will do it too. We all need each other. (You know it's MUCH easier to catch someone else overreacting than it is to catch yourself!) Claudine __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 17, 2001 If I'm a 'grounder' now, it's only because I used to be 'flyer', or whatever the opposite would be! It's just having had more time to learn and get used to all this, experience. And yes, that is plenty of experience overreacting myself! We all do it, I still will do it too. We all need each other. (You know it's MUCH easier to catch someone else overreacting than it is to catch yourself!) Claudine __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 Becki, Just curious as we have only started the waiting for enbrel game. Has your rheumy said anything about switching to remicaide instead of continuing to wait? My husband called Immunex today and they would give no time estimates whatsoever. The rheumy's nurse said he issued a prescription in November that took 2 weeks, but Abbies is the only one since then. I'm not very good at waiting. We will switch to remicaide if necessary. Christy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 We are waiting for it also. We too are considering just going to Remicaide. Buzz's doctor wants to try Enbrel first only because it should also help with his asthma problems. I just don't know if the wait is worth it. Today his knee is swollen again, can barely do any school work, but he is also wheezing and coughing something horrible. We just don't know what is best. Amy Re: meds Becki,Just curious as we have only started the waiting for enbrel game. Has your rheumy said anything about switching to remicaide instead of continuing to wait? My husband called Immunex today and they would give no time estimates whatsoever. The rheumy's nurse said he issued a prescription in November that took 2 weeks, but Abbies is the only one since then. I'm not very good at waiting. We will switch to remicaide if necessary.Christy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 Hi everyone, Why is there a waiting list for embrel? Do you have to be approved by the manufacture or something? How fustrating..... Take care everyone, Kim and (2 yrs, Poly) --- gazelle34@... wrote > Becki, > > Just curious as we have only started the waiting for > enbrel game. Has your > rheumy said anything about switching to remicaide > instead of continuing to > wait? My husband called Immunex today and they would > give no time estimates > whatsoever. The rheumy's nurse said he issued a > prescription in November that > took 2 weeks, but Abbies is the only one since then. > > > I'm not very good at waiting. We will switch to > remicaide if necessary. > > Christy > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 My daughter has been using Enbrel for quite some time now. We got it rather quickly because the hospital participates in some program with Immunex. We enrolled in that (tons of paperwork about ) and we have to fill out paperwork every so often to update her progress. However, the pharmacy was having problems getting the meds from Immunex. They had us register with them and we now have a card with 's number on it and that's what the pharmacy uses to fill her prescriptions each time. (13, systemic) was getting Enbrel twice a week and for a couple months now, she been getting it 3 times per week subQ, we do the tummy shots. She actually has started doing the shots on her own so that she has the freedom to go somewhere and not be tied to the house because of a shot that I was giving her. Anyway, maybe contacting Immunex once you have a prescription would be an idea. Just my thoughts....Take Care Dayna Drennan Re: meds Hi everyone, Why is there a waiting list for embrel? Do you have to be approved by the manufacture or something? How fustrating..... Take care everyone, Kim and (2 yrs, Poly) --- gazelle34@... wrote > Becki, > > Just curious as we have only started the waiting for > enbrel game. Has your > rheumy said anything about switching to remicaide > instead of continuing to > wait? My husband called Immunex today and they would > give no time estimates > whatsoever. The rheumy's nurse said he issued a > prescription in November that > took 2 weeks, but Abbies is the only one since then. > > > I'm not very good at waiting. We will switch to > remicaide if necessary. > > Christy > __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 Well Good Luck Christy!! Seriously. has done well with her “cocktail”. We go in on the 14th and I’m hoping that they will cut back the Enbrel to twice a week and the cyclosporine down by a 1/3, but we shall see. She is doing well with the labs. Although the flu has been a real pain. We were in the Emergency room on Wednesday night. She had a horrible headache and had been vomiting for two days. She got 2 bags of IV fluids and Toredol for her headache. They also gave her 20mg of solumedrol. She hadn’t been keeping her other meds down. Thank goodness she’s feeling better again and back in school. This sure can be a bumpy road!! Dayna Drennan Re: meds Been there done that Dayna. I think got lucky because the hospital was participating in a study. Like I said earlier today, I'm not good at waiting. So we go back the first week of March. If we have nothing by then, I will talk to the rheumy about switching to remicaide. He gave us the choice in the first place, but recommended the enbrel saying that we wouldn't have to wait anymore. lol He's usually more on target than that. Christy Your use of is subject to the Terms of Service. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 Everyday when I go to the mailbox I hope that s Enbrel card has arrived.His liver enzymes are normal on the 20mg MTX but hes got a rash all around his mouth,eyelids and across the bridge of his nose,I know its not the systemic rash,because the more his MTX is raised the more obvious it is.I have a pretty good idea of what this means he wont go to 25mg and he may be droped to 17.5mg.Sorry Imeant to meantion the rash thing seperately.Becki and 3systemic still waiting for Enbrel karens tribe wrote: > I have a gripe about this world and technology..lol! Now how come when they > do come out with medications to help people..why does it take so long for > the patients to get it...it is crazy that jra patients have to wait for > enbrel...just doesn't make sense to me..sorry had to vent > > karen(tab16..poly) > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 When I called the company they were very confidintial they could not tell me how many people were on the list ahead of but they did tell me it was always changing,there is a minimum of 2 weeks but they have only let 10 people have it and no more for 5 months.No our rheumy has not mentioned Remicade yet we go back on the 20th. Becki and 3 systemic gazelle34@... wrote: Becki, Just curious as we have only started the waiting for enbrel game. Has your rheumy said anything about switching to remicaide instead of continuing to wait? My husband called Immunex today and they would give no time estimates whatsoever. The rheumy's nurse said he issued a prescription in November that took 2 weeks, but Abbies is the only one since then. I'm not very good at waiting. We will switch to remicaide if necessary. Christy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 You got it, there is not enough of it to go around ,your rheumy fills out an application and you mail it in then you wait for your Enbrel card at which time you can buy it.Yes it is very frustraiting to wait for a drug which may improve your child dramatically.Becki and 3systemic waiting 2 months the 21st. Kim Engle wrote: > Hi everyone, > > Why is there a waiting list for embrel? Do you have > to be approved by the manufacture or something? How > fustrating..... Take care everyone, > Kim and (2 yrs, Poly) > --- gazelle34@... wrote > > Becki, > > > > Just curious as we have only started the waiting for > > enbrel game. Has your > > rheumy said anything about switching to remicaide > > instead of continuing to > > wait? My husband called Immunex today and they would > > give no time estimates > > whatsoever. The rheumy's nurse said he issued a > > prescription in November that > > took 2 weeks, but Abbies is the only one since then. > > > > > > I'm not very good at waiting. We will switch to > > remicaide if necessary. > > > > Christy > > > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 Hi Dayna, That sure does sound like a nasty flu. I'm happy to hear that is feeling better : ) The same day you guys are seeing the rheumatologist, Josh will be seeing his eye doctor. Time for the color and field of vision (periphereal) exams. He sees his rheumatologist on Friday. Aloha, Georgina Well Good Luck Christy!! Seriously. has done well with her “cocktail”. We go in on the 14th and I’m hoping that they will cut back the Enbrel to twice a week and the cyclosporine down by a 1/3, but we shall see. She is doing well with the labs. Although the flu has been a real pain. We were in the Emergency room on Wednesday night. She had a horrible headache and had been vomiting for two days. She got 2 bags of IV fluids and Toredol for her headache. They also gave her 20mg of solumedrol. She hadn’t been keeping her other meds down. Thank goodness she’s feeling better again and back in school. This sure can be a bumpy road!! Dayna Drennan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 I too am glad she is feeling better. It is so hard when they get sick and there are so many things involved. The disease is bad enough in itself!! hopes to see the scale start dropping soon. She doesn’t even want to know about her weight anymore unless she has lost. Anyway, good luck at the eye doctor & the rheumy….. Take Care, Dayna Drennan Re: meds Hi Dayna, That sure does sound like a nasty flu. I'm happy to hear that is feeling better : ) The same day you guys are seeing the rheumatologist, Josh will be seeing his eye doctor. Time for the color and field of vision (periphereal) exams. He sees his rheumatologist on Friday. Aloha, Georgina Well Good Luck Christy!! Seriously. has done well with her “cocktail”. We go in on the 14th and I’m hoping that they will cut back the Enbrel to twice a week and the cyclosporine down by a 1/3, but we shall see. She is doing well with the labs. Although the flu has been a real pain. We were in the Emergency room on Wednesday night. She had a horrible headache and had been vomiting for two days. She got 2 bags of IV fluids and Toredol for her headache. They also gave her 20mg of solumedrol. She hadn’t been keeping her other meds down. Thank goodness she’s feeling better again and back in school. This sure can be a bumpy road!! Dayna Drennan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 12, 2002 Hi Dayna, That must be so hard for Dayna. Especially at this age. It catches me offguard now, when people comment about how much has slimmed down. Like the school nurse the other day, when she phoned me to pick up Josh ... as he wasn't doing too well and got fed up with limping from class to class in the rain (rainy day/barometric pressure-related, I think, if there IS such a thing?). I've gotten accustomed to his 'new' size but others who knew him during the long period while he was on higher dose steroids are amazed at the difference these days. I guess that's another of the ways he's been fortunate. Body image matters even when you're little, but more-so as you enter the teen years and beyond, when people tend to be more aware of the physical. In Hawaii though, a lot of people seem to think 'being chubby' is a positive thing. Cultural difference of many Hawaiians, Samoans, inos, and Tongans? He got so fed up with so many people approaching him to pinch his cheeks and tell him how cute he was. People we didn't even know! Once the dose of prednisone got lower, so did his weight. Drastically. I hope the same thing happens for Dayna. Aloha, Georgina I too am glad she is feeling better. It is so hard when they get sick and there are so many things involved. The disease is bad enough in itself!! hopes to see the scale start dropping soon. She doesn’t even want to know about her weight anymore unless she has lost. Anyway, good luck at the eye doctor & the rheumy….. Take Care, Dayna Drennan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 21, 2002 Georgina, Thank you for your thoughts regarding . Her appointment last week went well. Her sed rate is down to 25 and although she’s anemic, her labs looked pretty good. She tried to talk the doctor into letting her stop the cyclosporine which is rather nauseating, but he didn’t give in. The obvious evil with us right now is the steroids. Jess is down to 5mg a day and we should start another taper soon. We are looking into moving from the rainy side over to eastern WA, which is a dryer climate. Hopefully that will help things going in a positive direction. She lost 3 pounds which may not be much but let me tell you, every time we have gone in there since April of last year she has gained weight. I guess that means the taper is working and her weight gain is finally leveling off. Back to work, hope all is well in Hawaii!! Dayna Drennan Re: meds Hi Dayna, That must be so hard for Dayna. Especially at this age. It catches me offguard now, when people comment about how much has slimmed down. Like the school nurse the other day, when she phoned me to pick up Josh ... as he wasn't doing too well and got fed up with limping from class to class in the rain (rainy day/barometric pressure-related, I think, if there IS such a thing?). I've gotten accustomed to his 'new' size but others who knew him during the long period while he was on higher dose steroids are amazed at the difference these days. I guess that's another of the ways he's been fortunate. Body image matters even when you're little, but more-so as you enter the teen years and beyond, when people tend to be more aware of the physical. In Hawaii though, a lot of people seem to think 'being chubby' is a positive thing. Cultural difference of many Hawaiians, Samoans, inos, and Tongans? He got so fed up with so many people approaching him to pinch his cheeks and tell him how cute he was. People we didn't even know! Once the dose of prednisone got lower, so did his weight. Drastically. I hope the same thing happens for Dayna. Aloha, Georgina I too am glad she is feeling better. It is so hard when they get sick and there are so many things involved. The disease is bad enough in itself!! hopes to see the scale start dropping soon. She doesn’t even want to know about her weight anymore unless she has lost. Anyway, good luck at the eye doctor & the rheumy….. Take Care, Dayna Drennan Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 3, 2002 Connie.... You are worth the world to all of us...it's only those poor souls who can think of nothing but money money money who forget that each of us are humyns of great value. Don't let them get you down. Can I do anything to help you. You mean a lot to all of us here and you know you are more important than what any money grabbing doctor/pharmacy/pharmaceutical company might think.. Blessings dear friend... Tatezi > Well, I just found out my life is only worth $225. > Have been calling Dr A's office so script could be > called in to the new Pharmacy. Schering changed from > Priority to Express Groups. Dr's office will not call > it in unless I pay the balance, I have been paying $25 > once or twice a month, depending on if I can. > Makes me feel real sad knowing I am only worth $225. > Take Care, Connie > > __________________________________________________ > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 3, 2002 Thank You Tat, It is the Dr's office that I had so much trouble with that is doing it. It is hard to believe they are doing it. I never knew money meant that much to some people. Thanks Tat Take Care, Connie --- tatezi1 <tatezi@...> wrote: > Connie.... > > You are worth the world to all of us...it's only > those poor souls who > can think of nothing but money money money who > forget that each of us > are humyns of great value. > > Don't let them get you down. Can I do anything to > help you. You mean > a lot to all of us here and you know you are more > important than what > any money grabbing doctor/pharmacy/pharmaceutical > company might > think.. > > Blessings dear friend... > Tatezi > > > > Well, I just found out my life is only worth $225. > > > Have been calling Dr A's office so script could be > > called in to the new Pharmacy. Schering changed > from > > Priority to Express Groups. Dr's office will not > call > > it in unless I pay the balance, I have been paying > $25 > > once or twice a month, depending on if I can. > > Makes me feel real sad knowing I am only worth > $225. > > Take Care, Connie > > > > __________________________________________________ > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 3, 2002 Connie, Is that legal? Withholding medication for payment due? Which med is it? alley Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 3, 2002 The Interferon and Ribavarin script from Scherings Commitment to Care program. --- <patriciajean@...> wrote: > Connie, > > Is that legal? Withholding medication for payment > due? Which med is it? > > alley > > __________________________________________________ Quote Share this post Link to post Share on other sites
