edited to add...I have to stop procrastinating and get the save dates addressed for my daughter's wedding. I must stop coming here and checking my mail. I get distracted
[QUOTE=watchingwolf]
My question is this: Whereas they bring relief to so many why is it so many seem to be on a rollercoaster of taking one drug after another to alleviate the pain? My thinking is that these drugs aren't stopping the progression of RA because if they were RA sufferers wouldn't be constantly in search of relief for the pain and the progression of this devastating disease.
[/QUOTE]
WW, I am currently in the 'trying to find the right drug' go round right now. I am desperately searching out all my options, gathering information on Rituxin, Orencia (I pretty much have ruled this out due to lung issues), Remicade... well, you get the picture. I am also really researching AP, Fish oil (thanks to Jas!) and.... hold on.... Helminths (worms). Are you seeing I am desperate(?), because I am.
I am terrified as well because I have heart issues, aortic prolapse and athroscrosis and major lung issues (loads of RA nodules, pleurasy and scarring... why no Orencia for me). At this point, joint damage does not scare me.... heart attack and no function to my lungs horrify me. This is why I am on the merry-go-round of drugs... looking for cure or remission, I don't care, as long as my heart suffers no more damage and my lungs suffer no more damage.
I am at the point of desperation (the reason I would consider swallowing hookworms). My pulmonologist and my cardiologist both said in Jan. "YOU MUST GET HARD AND FAST AND AGGRESSIVE WITH THIS DISEASE", which has yet to happen and, in fact, I have gotten worse since last seeing them (I will see them both this month, and I am afraid of what they are going to say).
Any way, I hope this answers your question. I am trying other drugs, after having failure because of fear of death before my time... I am not done yet...I am scared.
I take traditional meds....and do very well compared to so many others. For me it has been the best option. I do feel sorry for so many who chase a treatment that works for them....but not everyone has those horrible struggles to find a treatment that suits them.Bumping after reading the AP thread... I hope this helps
[QUOTE=Lovie]I take traditional meds....and do very well compared to so many others. For me it has been the best option. I do feel sorry for so many who chase a treatment that works for them....but not everyone has those horrible struggles to find a treatment that suits them.[/QUOTE]
I know, Lovie, it is sad to have to look so hard for help and how wonderful not everyone with RA struggles so. I am grateful I live in a time with the choices and the science we have and I have insurance and really great doctors and a wonderful husband to support me in my search. And of course, this forum.
"Methinks all RA sufferers are being held hostage by the drug manufacturers and whoever else. If you don't try the drug treatments you deal with body-wracking pain and you aren't given any other alternatives - like a real cure. Plus, there's all the nasty side-effects of these drugs".
Let's see, I'm in clinical remission and have been for about 15 months due to the "drug manufacturers and whoever else". I'm very thankful to the "drug manufacturers and whoever else" for my remission. My husband is thankful, as are my family and friends. I didn't achieve clinical remission with AP therapy or Enbrel. I've never been offered a cure because there isn't a cure; I'm sure that must have been a typographical error, because you know there's no cure.
After 15 months of MXT and Humira I've not had any "nasty side effects" and don't expect to. All drugs have the potential to have side effects, some are worse than others, but you know when you're bedridden it doesn't really matter that much.
It's not your treatment or my treatment, it's just treatment. It's what works for us as individuals. Methinks, that the hostage statement is odd. My choice of treatment is the one that works for me. AP didn't work, Humira does. Lindy
LinB2009-04-03 18:04:09[QUOTE=watchingwolf] . AP can be a cure when the underlying cause of RA is found.
[/QUOTE]
if AP were a cure you would acheive that cure whether you knew the underlying cause or not...
[QUOTE=watchingwolf]I'm not going to bash the use of the arsenal of drugs used to treat RA.
My question is this: Whereas they bring relief to so many why is it so many seem to be on a rollercoaster of taking one drug after another to alleviate the pain? My thinking is that these drugs aren't stopping the progression of RA because if they were RA sufferers wouldn't be constantly in search of relief for the pain and the progression of this devastating disease.
Methinks all RA sufferers are being held hostage by the drug manufacturers and whoever else. If you don't try the drug treatments you deal with body-wracking pain and you aren't given any other alternatives - like a real cure. Plus, there's all the nasty side-effects of these drugs.
Just my thoughts. Personally, I'm fortunate to have a doctor who went along with me wanting to try AP - AP has allowed me to have the life I enjoyed before RA.
[/QUOTE]
I hope you are blessed to continue to feel great..
but this DOES sound like bashing.....perhaps you should have left out your opinions???
I've not been fortunate enough to have found my remission yet.....
I use 20 mg MTX and enbrel and have NO "nasty side-effects" what so ever at present.. I had hair loss from MTX but that is not happening any longer.. And, I have some stomach issues but that is from my Requip not my RA meds.......
I have some days that make me feel like I could be sliding into home on the road ot remission....... but they are only days here and there..... I am hopeful that I get there soon.
Every-damn-time I flare I find new erosions and destructions..... twice with bad flares in 18 months have given me some twisted fingers and major foot issues..
I don't have the patience or the time to "wait" too for a slower moving medical option to battle this RA...... I have severe RA that is being held at bay by my meds.. It's not enough for me..... but I will take this......... for now.
[QUOTE=buckeye][QUOTE=watchingwolf] . AP can be a cure when the underlying cause of RA is found.
[/QUOTE]
if AP were a cure you would acheive that cure whether you knew the underlying cause or not...
[/QUOTE] agreed, buckeye.
and needing to continue taking the therapy....... does not mean you're "cured" ... it means your treatment may have put you in remission.......
I guess I'm confused....what difference does it make what works for who? As long as people fighting this terrible disease have something NO matter what it is that works, what difference does it make? I, for one, am happy for anyone who has relief.
I do enjoy seeing what works for others because it gives me ideas on what might work for me.
This isn't directed to anyone in particular, just felt the need to put in my 2 cents watchingwolf-
Interesting post. Glad you are doing well.
I think sometimes....certainly not always; but I feel like some folks expect too much. Their looking for their old life back; and even if you acheive "remission" you won't feel like your "old sellf" I think you sort of need to re-define what a normal life is for you and accept the things you can not change and accept a certain amount of pain/problems with your health. Every achey & pain doesn't have to be a major setback. Sometimes their short lived if you stay positive and ride it out.
I honestly feel that those that do well with this disease have a different sort of attitude toward it. That's not to say folks are to blame for their own suffering; but it is to say that we have control over our emotions and that plays a huge role in how we cope with chronic illness.
You can almost tell those that do well from those that do not by the tone in their talk. Throw darts at me if you wish; but think about it. Notice those that constantly complain and are never satisfied and those that most often speak of their problems with a positive tone. Theres a big difference in those folks that ask question or mention problems and those folks that post on a different level entirelly. Notice the difference in the quality of life these folks have.
Don't stone me.....just start your own observation. I've been hanging around here a long, long time. Longer than most. I've been watching this experiment for years now.
[QUOTE=Lovie]
I think you sort of need to re-define what a normal life is for you and accept the things you can not change and accept a certain amount of pain/problems with your health. Every achey & pain doesn't have to be a major setback. Sometimes their short lived if you stay positive and ride it out.
[/QUOTE]
I have been in drug induced remission twice. Once with Plaquenil for about two years and again with Enbrel (for the last 15 months). I feel like my old self. I can do everything I did before.
I really think it depends on the amount of damage you incurred before you go into remission. I think if you have a lot of damage, of course you have to redefine what is normal for you, and that you will have painful days. But for those that don't have, or have minimal damage, (like myself) I believe they should expect to be their old self again. I think it's something you should strive for, because it has been achieved by others.
[QUOTE=Lovie]I think sometimes....certainly not always; but I feel like some folks expect too much. Their looking for their old life back; and even if you acheive "remission" you won't feel like your "old sellf" I think you sort of need to re-define what a normal life is for you and accept the things you can not change and accept a certain amount of pain/problems with your health. Every achey & pain doesn't have to be a major setback. Sometimes their short lived if you stay positive and ride it out.
Lovie, if I cried over every ache and pain, I
would be crying all the time. I am not looking for my old life back
but I am on the hunt for remission and fighting hard for it too.
Kicking and screaming! If I don't talk about failure of a drug (complain) and ask questions of other members, how will I know whether or not my complaint is an isolated incident... or a common or occasional occurance? Sheesh, can you imagine a drug trial where participants didn't complain... we would have loads of ineffective drugs!
I don't feel this disease is all about
attitude. If it were, then we would have our cure. Yeah, we have
control over our emotions and that helps us stay away from depression,
but how can you condem those who complain about an awful disease? I
thought that was part of the reason to have this forum to go to anyway,
no? To suggest those who complain hinder their chances of success with
a drug is silly.
So, here is me.... throwing a rock at not you, but your statement. There is nothing wrong with the occasional pity party, complaint or daily whine... that is not what is going to hinder your disease... Doing nothing when you have choices and not learning about them... now that'll get ya!
I agree 100%!!! I can say, I don't always follow this line of thinking in my own disease process, but I am striving to that everyday. I have also noticed (this is just MY opinion, nothing else) that those who are still able to be active (jobs, etc) do better than those who don't work or don't have much to occupy their time. I'm not suggesting in any way shape or form that anyone is responsible for their suffering. With that said, I think attitude makes a huge difference. In the medical profession, I have worked with many people who have been dealt a crappy hand of cards, but you would never know it but speaking with them. Some of our posters eat, drink, sleep this disease. I am more than someone with RA. I am a woman, a nurse, an employee, a friend, a lover .........on and on.
Phats
[QUOTE=waddie] [QUOTE=Lovie]I think sometimes....certainly not always; but I feel like some folks expect too much. Their looking for their old life back; and even if you acheive "remission" you won't feel like your "old sellf" I think you sort of need to re-define what a normal life is for you and accept the things you can not change and accept a certain amount of pain/problems with your health. Every achey & pain doesn't have to be a major setback. Sometimes their short lived if you stay positive and ride it out.
I honestly feel that those that do well with this disease have a different sort of attitude toward it. That's not to say folks are to blame for their own suffering; but it is to say that we have control over our emotions and that plays a huge role in how we cope with chronic illness.
You can almost tell those that do well from those that do not by the tone in their talk. Throw darts at me if you wish; but think about it. Notice those that constantly complain and are never satisfied and those that most often speak of their problems with a positive tone. Theres a big difference in those folks that ask question or mention problems and those folks that post on a different level entirelly. Notice the difference in the quality of life these folks have.
Don't stone me.....just start your own observation. I've been hanging around here a long, long time. Longer than most. I've been watching this experiment for years now.
[/QUOTE]
Lovie, if I cried over every ache and pain, I would be crying all the time. I am not looking for my old life back but I am on the hunt for remission and fighting hard for it too. Kicking and screaming! If I don't talk about failure of a drug (complain) and ask questions of other members, how will I know whether or not my complaint is an isolated incident... or a common or occasional occurance? Sheesh, can you imagine a drug trial where participants didn't complain... we would have loads of ineffective drugs!
I don't feel this disease is all about attitude. If it were, then we would have our cure. Yeah, we have control over our emotions and that helps us stay away from depression, but how can you condem those who complain about an awful disease? I thought that was part of the reason to have this forum to go to anyway, no? To suggest those who complain hinder their chances of success with a drug is silly.
So, here is me.... throwing a rock at not you, but your statement. There is nothing wrong with the occasional pity party, complaint or daily whine... that is not what is going to hinder your disease... Doing nothing when you have choices and not learning about them... now that'll get ya!
[/QUOTE] I've been called a Pollyanna but I tell you that attitude and mindset has gotten me through the worst of this disease. It works for me, it may not work for others but it's worth a try.
I'm not an RA victim, nor a hostage; I'm a woman that has rheumatoid arthritis who's always had clinical remission as my goal. There are many people with much more serious illnesses than mine. My best friend has stage 4 breast cancer and she's enjoying her life to the fullest. My DIL's mom is blind but she still volunteers at the hospital. What I have is nothing compared to what those two courageous women face each day. Women like them keep me striving to do more.
When I couldn't work any longer, I volunteered and started a business designing and redesigning jewelry. I can't and won't allow this disease to win or take anything further from me. When it takes something I replace that lost thing with something else.
I don't have my old life back - I have a brand new life that I've carved out of my old life and added to. To be honest, my new life is much more satisfying and interesting. Not everyone can look at life in this manner, but you can still do small things to make a new life for yourself. Remember, you're a person first and secondly you have RA. Lindy
Lindy, your attitude is fantastic. What an inspiration you are!
[QUOTE=GG]Lindy, your attitude is fantastic. What an inspiration you are!
[/QUOTE]
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