Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 ----- Original Message ----- From: littletrollishbeing > I am also wondering about Remicaid. I have both Medicare andMedicaid. Would it be paid for? I just checked on Remicade for myself and Medicare will pay 80%. Isn't Medicaid going to stop paying for drugs once Medicare's drug plan goes into effect? Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Welcome to the board. With your multiple problems going to the Mayo Clinic is a great move. The team of doctors can come up with a treatment plan that will address all of your problems instead of just one of them. I don't know where you get your information about side effects but I know it is hard to get accurate information. The drug companies issue warning written by lawyers for lawyers to protect the company instead of being written by doctors for patients to protect the patient. These warnings list all bad things that have been reported for any patient while taking the drug even if there is no clear connection between the bad thing and the drug. The warnings do not give information about how common or rare the side effects are. The other common way to learn about side effects is to read boards like this. People who respond well to drugs usually don't feel a need to come to a place like this or come when they have problems and leave when things settle down again. This board and similar ones are magnets for the worst cases. Probably your best source of accurate information is your doctor but many of them will not take the time to be accurate but will merely refer to the drug company information. They may answer specific questions like, "how many of your patients who take drug A have side effects X, Y, or Z?" Unfortunately our society is so tuned to law suits that doctors tend not to answer with their best information but to pass the buck to someone else. I know that joint damage from RA is permanent with only partial relief by replacement of some joints. Also the drugs have sufficient benefit and sufficiently small side effects for the drugs to be approved by the FDA. There are problems with taking the drugs but the FDA feels that there are even greater problems by not taking the drugs. Some people also have severe food allergies but we don't avoid all the foods that anyone else might be allergic to. Some people have problems with drugs but I don't avoid drugs because of their problems. Also almost all side effects of drugs are reversed when the drug is stopped, but joint damge from RA is never reversed. I hope this helps. God bless. ----- Original Message ----- From: littletrollishbeing Rheumatoid Arthritis Sent: Thursday, July 28, 2005 5:29 PM Subject: Another newbie here Hi. My name is Helen. I have been recently diagnosed with RA. Ihave not yet seen a Rheumatologist because I am going to the MayoClinic due to some other severe kidney problems. So, the Mayodoctors are going to address all of my health concerns and start meon treatments there and then I will continue them when I go backhome to Michigan.I am very concerned, however, because of all I have read about thedrugs used for RA and all of their side effects. I am only 35 yearsold. I had to take disability in 1999 because I was havingcontinuous surgeries on my stomach and no longer able to hold a jobdue to the constant hospitalizations, doctor's visits andexhaustion.I am on over 16 medications for heart, kidney, and stomachproblems...mostly problems from birth. Now on top of everything Iget this diagnosis of RA with also lower lumbar stenosis.I want to lead a normal life...whatever normal is. However, itseems from what I have been reading, the side effects of themedications are just as bad as the RA or almost as bad. I have RAseverely in my feet to the point I can hardly walk some days. I alsohave it in my back, neck, and knees. I like to be informed and knowwhat's what. I like to make informed decisions and be involved inmy treatment, but I am just not sure about all of this. I want outof the pain so badly, but I don't want all the side effects either.I have tried the holistic health way and many other things, but dueto my stomach problems, I can't absorb a lot of things.I am also wondering about Remicaid. I have both Medicare andMedicaid. Would it be paid for?Thanks for any help and support you can give me.Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Well said!! I truly believe in taking the meds that prevent joint damage - not just meds that will hide the pain - I'm having a huge success on Humira lately - I haven't felt this good in a long time. I don't worry about my joints becoming permanently damaged, as I know I'm doing everything I can to prevent that. I think if I didn't, regardless if I do get joint damage in the future, which is inevitable with this disease, that at least I can say, I tried everything I could to prevent it for as long as possible. I've already heard there are some new meds in the makings my doc has talked about - albeit another type of infusion - but at least they are working on something. So I'm keeping as optimistic as possible and hope that my decisions today will only help keep me healthier and more mobile until they do come out with better meds. Hope everyone is having a great day - and hope and pray you feel better if in a lot of pain - take care! Harold Van Tuyl <hvantuyl@...> wrote: Welcome to the board. With your multiple problems going to the Mayo Clinic is a great move. The team of doctors can come up with a treatment plan that will address all of your problems instead of just one of them. I don't know where you get your information about side effects but I know it is hard to get accurate information. The drug companies issue warning written by lawyers for lawyers to protect the company instead of being written by doctors for patients to protect the patient. These warnings list all bad things that have been reported for any patient while taking the drug even if there is no clear connection between the bad thing and the drug. The warnings do not give information about how common or rare the side effects are. The other common way to learn about side effects is to read boards like this. People who respond well to drugs usually don't feel a need to come to a place like this or come when they have problems and leave when things settle down again. This board and similar ones are magnets for the worst cases. Probably your best source of accurate information is your doctor but many of them will not take the time to be accurate but will merely refer to the drug company information. They may answer specific questions like, "how many of your patients who take drug A have side effects X, Y, or Z?" Unfortunately our society is so tuned to law suits that doctors tend not to answer with their best information but to pass the buck to someone else. I know that joint damage from RA is permanent with only partial relief by replacement of some joints. Also the drugs have sufficient benefit and sufficiently small side effects for the drugs to be approved by the FDA. There are problems with taking the drugs but the FDA feels that there are even greater problems by not taking the drugs. Some people also have severe food allergies but we don't avoid all the foods that anyone else might be allergic to. Some people have problems with drugs but I don't avoid drugs because of their problems. Also almost all side effects of drugs are reversed when the drug is stopped, but joint damge from RA is never reversed. I hope this helps. God bless. ----- Original Message ----- From: littletrollishbeing Rheumatoid Arthritis Sent: Thursday, July 28, 2005 5:29 PM Subject: Another newbie here Hi. My name is Helen. I have been recently diagnosed with RA. Ihave not yet seen a Rheumatologist because I am going to the MayoClinic due to some other severe kidney problems. So, the Mayodoctors are going to address all of my health concerns and start meon treatments there and then I will continue them when I go backhome to Michigan.I am very concerned, however, because of all I have read about thedrugs used for RA and all of their side effects. I am only 35 yearsold. I had to take disability in 1999 because I was havingcontinuous surgeries on my stomach and no longer able to hold a jobdue to the constant hospitalizations, doctor's visits andexhaustion.I am on over 16 medications for heart, kidney, and stomachproblems...mostly problems from birth. Now on top of everything Iget this diagnosis of RA with also lower lumbar stenosis.I want to lead a normal life...whatever normal is. However, itseems from what I have been reading, the side effects of themedications are just as bad as the RA or almost as bad. I have RAseverely in my feet to the point I can hardly walk some days. I alsohave it in my back, neck, and knees. I like to be informed and knowwhat's what. I like to make informed decisions and be involved inmy treatment, but I am just not sure about all of this. I want outof the pain so badly, but I don't want all the side effects either.I have tried the holistic health way and many other things, but dueto my stomach problems, I can't absorb a lot of things.I am also wondering about Remicaid. I have both Medicare andMedicaid. Would it be paid for?Thanks for any help and support you can give me.Helen for Mobile Take with you! Check email on your mobile phone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 I hope to have good success like you are after I get a couple of shots. There is a new one that I know of, but not yet approved by the FDA...it's another injection. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com MSN: Maggies1429 AOL: Maggies85 sunshine wrote: Well said!! I truly believe in taking the meds that prevent joint damage - not just meds that will hide the pain - I'm having a huge success on Humira lately - I haven't felt this good in a long time. I don't worry about my joints becoming permanently damaged, as I know I'm doing everything I can to prevent that. I think if I didn't, regardless if I do get joint damage in the future, which is inevitable with this disease, that at least I can say, I tried everything I could to prevent it for as long as possible. I've already heard there are some new meds in the makings my doc has talked about - albeit another type of infusion - but at least they are working on something. So I'm keeping as optimistic as possible and hope that my decisions today will only help keep me healthier and more mobile until they do come out with better meds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 Good luck Maggie! Don't be bummed if you don't see any immediate results - it can take up to 3 months to see relief - but some see it after the first shot or 2 - I wish you success!!! Have a great day Maggie <meshouse@...> wrote: I hope to have good success like you are after I get a couple of shots. There is a new one that I know of, but not yet approved by the FDA...it's another injection. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com MSN: Maggies1429 AOL: Maggies85sunshine wrote: Well said!! I truly believe in taking the meds that prevent joint damage - not just meds that will hide the pain - I'm having a huge success on Humira lately - I haven't felt this good in a long time. I don't worry about my joints becoming permanently damaged, as I know I'm doing everything I can to prevent that. I think if I didn't, regardless if I do get joint damage in the future, which is inevitable with this disease, that at least I can say, I tried everything I could to prevent it for as long as possible. I've already heard there are some new meds in the makings my doc has talked about - albeit another type of infusion - but at least they are working on something. So I'm keeping as optimistic as possible and hope that my decisions today will only help keep me healthier and more mobile until they do come out with better meds. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2005 Report Share Posted August 2, 2005 However, it > seems from what I have been reading, the side effects of the > medications are just as bad as the RA or almost as bad. Helen, both my mom and I have RA. We have made different choices; she will not see a rheumatologist, not even to obtain information. She despises prescription medications of all kinds and does not trust doctors. As a result of lack of proper treatment, she is losing the ability to walk and lives a reclusive life. Her hands have become disfigured. She sleeps a lot and the pain can make her irritable. She no longer drives. She had to miss a family wedding last month due to health. Sadly, she's fairly young--in her early 60s. Seeing how untreated RA has ravaged her makes me happily gulp my meds! Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hi Martha, Welcome and so sorry you have CML, but you will get great info from this group. I've been on Gleevec since June, 2001 and so far so good. Like you, my side-effects were minimal. Again, welcome to the group! Take care, Zazzy > > Hello group, > > I am recently diagnosed (April 2008) and have just completed my first month on Gleevec 400, without any problematic side effects (other than the puffy eyes)...so far. Maybe taking it with my morning oatmeal does the trick! > > Diagnosis was seemingly by chance (as I am sure is true for many) and a real surprise. But I believe it was discovered early enough to give me reason to have a very positive outlook for the future. > > I do want to thank all of you who have traveled this path before me. If it were not for all your clinical trials and experience....well, thank you very much. Lucky to be diagnosed now and not 10 years ago! > > And thank you for the discussion here about dealing with it all. > > By the way, I am 59 and a change-of-career graduate student, hoping to finish a PhD within the next year (docs say that the CML shouldn't hold me up very much). > > Thank you all, > Martha B > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.