Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 In a message dated 10/9/2005 10:11:57 P.M. Central Standard Time, bart.tracy@... writes: Just wondering; do you ever think it might be better to not take all these drugs and see what happens. Does the risks ever scare you, really scare you? I worry more in the long term since I'm only 30. My mother who is 53 was just diagnosed this year but I feel she's got a better prognosis than I because I will have to be on the meds so much earlier than her. Sometimes I just wonder, what would be worse, being crippled up and in pain alot or risk something worse by longterm use of these drugs.*Sighs* I dont know I am taking Enbrel once a week, and have started taking 4 MTX a week too, since the Enbrel isn't working very well. I talked my rheumatologist into starting me back on MTX to avoid starting Remicaid, which is scary stuff. The drugs work. I am 38 years old, was diagnosed 2 years ago, the symptoms came on suddenly. I am single and live with my mother who is becoming more and more disabled every year. I was almost 100% disabled before the doc put me on Prednisone and the other RA drugs. I am able to function now but still have my bad days, which are caused by the stress of my job, as I am doing great on the weekends. I have severe asthma, get bronchitis frequently and am allergic to most antibiotics. I will take my chance with the RA drugs, as I cannot go back to the way I was, it's not an option. I went to see my GP for bronchitis a couple of weeks ago, and told him that I started taking the Enbrel, and he got out his drug book and read the "black box warning" for the drug about the deaths from Sepsis. He told me he was sorry that he had read the "black box warning", as I have been seeing the same GP for 22 years and have had some serious illnesses in the past, so I guess he's afraid for me. I am trying to keep a positive attitude like my rheumatologist told me to do, and not sweating the small stuff. Getting RA has made me cherish the good days even more, and being pain-free for the first time in my life has a "euphoric effect" on me. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi Becky- There is a choice every RA patient has. The disease itself, and its effect on the quality of our lives, how it limits us or effects us, is a personal choice. After going many months with suspect diagnosis from a myraid of doctors, I finally tested positive for RA in 95. I went to an Arthritis foundation meeting at the chapter office and there I saw a woman in a wheel chair, younger than I was. Her feet and hands were horribly crippled. She had suffered since a child without the DMARDS and Biologics we have now. It scared me. It shook me out my denial. I was so depressed and thought my life was over. An old persons disease. The pain was doing things to my mind. I would do anything to stop the pain and the swelling. I started on MTX then. Along with prednisone and plaquenil. I faithfully got support and found some amazing friends in the coming months. I started my own support group in 96. I have taken every drug you can think of expect ridura. I was going to be as aggressive attacking my disease as it was... attacking me!!! We can choose to extend our lives being crippled and in severe pain, with no quality, or we can take every chance at modifying the disease with medication and yes, possibly shorten our lives from the side effects. The Irony in my situation is, the RA and the meds will not kill me, but surgery and subsequent adhesions from a condition that was there before my RA, will. My genetics and heredity will be the cause of my demise. A weak immune system I can fight by carefully limiting my exposure to people and practicing safe sanitizing methods help alot. My genetics I cannot. Sometimes we take the miracle of DMards and Bios for granted, thats until we cant walk, or cant move, and are out of our minds in pain. The more ground you give RA, the more it will take. It has no heart and no mind and no conscience. It is a parasite that feeds on our bodies until there is nothing. I for one wont let it eat me alive without a fight. That is what RA does, as with so many connective tissue diseases. Eats you alive. Be well everyone, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 The risk of the medicines bother me but the likelihood of being bedridden wihout the medicines bothers me more. I am on Remicade and Methotrexate and able to function quite well. Before starting the medicines I couldn't even get out of bed to go to the bathroom. I never want to be in that condition again if I can help it. There is a small risk of serious troubles with the medicines and there is almost a certainty of serious troubles for me without the medicines. I have no problem with my decision. God bless. ----- Original Message ----- From: bart.tracy@... Rheumatoid Arthritis Sent: Sunday, October 09, 2005 8:09 PM Subject: Medicine Risk Worries Hi all,I've posted before but am noteably not a regular poster here, more of a reader. Anyways, to refresh everyone, My name is , I'm 30 and have been diagnosed for about 1 and 1/2yrs now. I had been taking Plaquenil & Mobic to control my RA until recently, I decided that I just couldn't stand the skin reactions to my Plaquenil so I've stopped taking it as of a week ago. Wasn't a real hard decision as I'm hoping to conceive in December and would be needing to stop it soon enough anways. I'm hoping that mobic & tylenol can control me for awhile and hopefully I'll be lucky and have a remission type pregnancy.Ah, anyways I have a dear family friend who's 59 and has had RA for 20 something years. She's got severe RA, with full deformities on her hands, knee problems yada yada. She's been taking MTX, Plaquenil and a few other things for 20 something years. She doesn't take any of the newer drugs like Humira or Remicade because her cost for it is way too high Last year she found out that she has Myloma (sp) a blood cancer that can invade the bone, which at that time was dormant. She feels it was caused by her meds after so many years. She was hospitalized last week for acute pneumonia, high blood pressure, and her cancer that was dormant is now active and her meds / ra is flaring and her body is just having a heck of a reaction with everything I guess.Just wondering; do you ever think it might be better to not take all these drugs and see what happens. Does the risks ever scare you, really scare you? I worry more in the long term since I'm only 30. My mother who is 53 was just diagnosed this year but I feel she's got a better prognosis than I because I will have to be on the meds so much earlier than her. Sometimes I just wonder, what would be worse, being crippled up and in pain alot or risk something worse by longterm use of these drugs.*Sighs* I dont know Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 I would say to not take the medication or do anything for your RA is neglegent, however I don't believe medication is the answer either. Having said that there are times we all need medications and with RA the pain is so intense that is one of the times it's needed. I just believe that even while taking the meds a person should be reviewing and testing life style choices to find what it is in your diet or lifestyle that is the cause of this disease......because it's surely not being cured by taking medications, just slowed down or masked. Also too often the medications don't work long term and that alone indicates that we should do more for ourselves than just medicate. Never just allow the disease to destroy your chances for a future without pain. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: <bart.tracy@...> <Rheumatoid Arthritis > Sent: Sunday, October 09, 2005 8:09 PM Subject: Medicine Risk Worries > Hi all, > > I've posted before but am noteably not a regular poster here, more > of a reader. Anyways, to refresh everyone, My name is , I'm 30 > and have been diagnosed for about 1 and 1/2yrs now. I had been > taking Plaquenil & Mobic to control my RA until recently, I decided > that I just couldn't stand the skin reactions to my Plaquenil so > I've stopped taking it as of a week ago. Wasn't a real hard decision > as I'm hoping to conceive in December and would be needing to stop > it soon enough anways. I'm hoping that mobic & tylenol can control > me for awhile and hopefully I'll be lucky and have a remission type > pregnancy. > > Ah, anyways I have a dear family friend who's 59 and has had RA for > 20 something years. She's got severe RA, with full deformities on > her hands, knee problems yada yada. She's been taking MTX, Plaquenil > and a few other things for 20 something years. She doesn't take any > of the newer drugs like Humira or Remicade because her cost for it > is way too high Last year she found out that she has Myloma (sp) > a blood cancer that can invade the bone, which at that time was > dormant. She feels it was caused by her meds after so many years. > She was hospitalized last week for acute pneumonia, high blood > pressure, and her cancer that was dormant is now active and her > meds / ra is flaring and her body is just having a heck of a > reaction with everything I guess. > > Just wondering; do you ever think it might be better to not take all > these drugs and see what happens. Does the risks ever scare you, > really scare you? I worry more in the long term since I'm only 30. > My mother who is 53 was just diagnosed this year but I feel she's > got a better prognosis than I because I will have to be on the meds > so much earlier than her. > > Sometimes I just wonder, what would be worse, being crippled up and > in pain alot or risk something worse by longterm use of these drugs. > > *Sighs* > > I dont know > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 My feeling is they make these medications to help us, so why not use them if you are able to. For me, my meds make me able to do things and function. Without them I'm useless. Also, I have an uncle who has severe RA like I do and he can't tolerate any of the DMARDS , other meds because of his liver....he has been bedridden for a long time with RA. I don't want to be like that. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Maggie http://www.4HockeyFans.com http://www.4FloridaHockey.com MSN: Maggies1429 AOL: Maggies85 Just wondering; do you ever think it might be better to not take all these drugs and see what happens. Does the risks ever scare you, really scare you? I worry more in the long term since I'm only 30. My mother who is 53 was just diagnosed this year but I feel she's got a better prognosis than I because I will have to be on the meds so much earlier than her. Sometimes I just wonder, what would be worse, being crippled up and in pain alot or risk something worse by longterm use of these drugs. *Sighs* I dont know Quote Link to comment Share on other sites More sharing options...
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