Guest guest Posted June 29, 2005 Report Share Posted June 29, 2005 Sara: Good for you wanting to be an RN - more nurses with greater knowledge of this disease would be a great benefit - Anyway, here goes on your questions - How long and how progressed is your RA? I was dx 6 years ago. I have what I feel is moderate RA. I have daily pain and stiffness in my joints. It began in my hands and wrists, and has since moved on to involve all of my joints, with my feet, ankles, wrists, elbows, and SI joint being my worst at this time. I am able to continue, with the help of meds, to pretty much take care, most days, of what I need to take care of home, family, and the farm fur friends. I go to Curves - I try for 3 times a week - but sometimes the old bod just won't cooperate - and find that it helps. I still can ride my horse from time to time - getting up on a set of steps that my husband made for me as I cannot get on the regular way any longer, and my daughter takes care of the saddling for me too. I feel that I am very lucky to be able to continue doing it, as it is my favorite soul and spirit therapy. I can't be on as long - an hour is about my limit - but it is still for that time I feel free of the RA - until dismounting, ouch, lol. What drug are you on? Is it injectible? Currently I am on Methotrexate 20 mg. weekly, Mobic, Ultracet, and just recently began Enbrel. The Mtx and Enbrel are supposed to be good together, so hopefully with time I will begin to feel better with the addition of Enbrel. I was doing Mtx injectible and it was much more effective than the pills, but have been having trouble finding it for the past several months. The Enbrel is injectible. I also take Milk Thistle and Folic Acid for Mtx side effects. I take other meds too - antidepressant, blood pressure, and asthma. Since being dx with RA, I have also been treated at various times with Plaquenil, Motrin, Prednisone, Lodine, Celebrex, Arava, and Bextra. Hope I'm not forgetting any ...... What therapies did you try before turning to Rx therapy? At the time of my dx, I had been designing and making jewelry, and had pain and stiffness on and off in my wrists, hands and fingers which I put down to over-doing my work. I was 45 and did not think at that time of arthritis - I was too young, lol. Boy, was I wrong. Anyway, I was taking Motrin when I had pain, and that was doing fine until one evening when my thumb joints became extremely painful, and by the morning (after not sleeping much that night) my hands were swollen, red-hot and painful balloons. It was only at that time did I give any thought to arthritis, and since my grandmother had RA, that was what I figured I might have. In my ignorance of RA, I had no idea, even with a family member with the disease, that it was so much more than just a little joint pain. That first flare was a real eye-opener. How long did it take for RA to progress to get you to try Rx therapy? When my doctor saw me that first flare, she immediately put me on Prednisone and Motrin. She did blood work and when that came back RA positive, we sat down and discussed various medications, and I was started on Plaquenil. I credit her agressive treatment of my RA with the fact that my RA is under good control, and my life is still intact much as it was before dx. The pain is a constant, the fatigue too, but I am very lucky, after learning of some of the others stories in this group, that I do not have more severe disability. What side effects have you had? I had not side effects with the Plaquenil and it worked well for almost 2-1/2 years before the RA became aggressive and it just was not helping any longer. Arava was the worst for me - stomach problems with very sudden episodes of diarrhea, and I do me sudden lol. I also began to experience peripheral neuropathy after about 6 months on it with numbness and tingling in my feet and hands. It was mainly because of the PN that I stopped the drug because, all in all, it did seem to be helping. I am able to tolerate the Mtx well - hair thinning and loss is about my worst side effect with that, in addition to more fatigue the day after I take it. Bextra and Lodine were not helpful. Celebrex was, but I stopped taking it when the Vioxx scare came about. Enbrel causes extreme fatigue the day after the shot but I have had no problems with the injection, or reactions to it other than a bit of bruising at times. Motrin eventually caused a lot of stomach problems with constant heartburn, and the Mobic has done very well for me without those problems. Prednisone is a great drug for the pain and inflammation, but does a number on my mind - I get very serious and intense, and yet also very busy, and hungry lol. I take it only when really necessary. If you work on your feet or using your hands, how do you deal with the pain both during and after? (Sometimes I can barely stand long enough to cook my family's meals, as it hurts clear down through my shins and joints.) I had to give up the jewelry making which I miss very much. I cannot sit or stand for very long without increased pain, and cannot write for long either, so I am not sure what kind of job I would be able to do for very long. I did work two days a week for a while at a friend's business where I was able to move around if I needed to, but sometimes the phones would just not stop, I was trapped in one position at the desk for long periods of time, and by end of work would have a lot of trouble walking because of increased SI pain. That is what finally caused me to leave that job - the SI pain became constant and sitting was painful. I still want to do something, but finding the job that would allow me to do what I need to not have pain or reduce it is frustrating. So, this has become quite long and wordy - hope you have hung in there through my novel lol. Hope it helps. Kathe in CA Kathe in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 You've given a lot of helpful " real life " experience in this post. Thank you very much. A friend of mine has suggested Remicade. I read up on it a bit....ugh. I don't know about it. TB, liver, heart failure, sinus infections, all kinds of stuff. I have asthma and allergies anyway so how does one tell the difference, kwim? Plus it's a 2 hour sit through the getting the IV...I don't have childcare for 4 kids to do that. Guess we'll see after I get to the docs. Thanks again. Sara --- In , Kathe Sabetzadeh <lv2ryd@y...> wrote: > Sara: > > Good for you wanting to be an RN - more nurses with > greater knowledge of this disease would be a great > benefit - Anyway, here goes on your questions - > > How long and how progressed is your RA? > > I was dx 6 years ago. I have what I feel is moderate > RA. I have daily pain and stiffness in my joints. It > began in my hands and wrists, and has since moved on > to involve all of my joints, with my feet, ankles, > wrists, elbows, and SI joint being my worst at this > time. I am able to continue, with the help of meds, > to pretty much take care, most days, of what I need to > take care of home, family, and the farm fur friends. > I go to Curves - I try for 3 times a week - but > sometimes the old bod just won't cooperate - and find > that it helps. I still can ride my horse from time to > time - getting up on a set of steps that my husband > made for me as I cannot get on the regular way any > longer, and my daughter takes care of the saddling for > me too. I feel that I am very lucky to be able to > continue doing it, as it is my favorite soul and > spirit therapy. I can't be on as long - an hour is > about my limit - but it is still for that time I feel > free of the RA - until dismounting, ouch, lol. > > What drug are you on? Is it injectible? > > Currently I am on Methotrexate 20 mg. weekly, Mobic, > Ultracet, and just recently began Enbrel. The Mtx and > Enbrel are supposed to be good together, so hopefully > with time I will begin to feel better with the > addition of Enbrel. I was doing Mtx injectible and it > was much more effective than the pills, but have been > having trouble finding it for the past several months. > The Enbrel is injectible. I also take Milk Thistle > and Folic Acid for Mtx side effects. I take other > meds too - antidepressant, blood pressure, and asthma. > > > Since being dx with RA, I have also been treated at > various times with Plaquenil, Motrin, Prednisone, > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > forgetting any ...... > > What therapies did you try before turning to Rx > therapy? > > At the time of my dx, I had been designing and making > jewelry, and had pain and stiffness on and off in my > wrists, hands and fingers which I put down to > over-doing my work. I was 45 and did not think at > that time of arthritis - I was too young, lol. Boy, > was I wrong. Anyway, I was taking Motrin when I had > pain, and that was doing fine until one evening when > my thumb joints became extremely painful, and by the > morning (after not sleeping much that night) my hands > were swollen, red-hot and painful balloons. It was > only at that time did I give any thought to arthritis, > and since my grandmother had RA, that was what I > figured I might have. In my ignorance of RA, I had no > idea, even with a family member with the disease, that > it was so much more than just a little joint pain. > That first flare was a real eye-opener. > > How long did it take for RA to progress to get you to > try Rx therapy? > > When my doctor saw me that first flare, she > immediately put me on Prednisone and Motrin. She did > blood work and when that came back RA positive, we sat > down and discussed various medications, and I was > started on Plaquenil. I credit her agressive > treatment of my RA with the fact that my RA is under > good control, and my life is still intact much as it > was before dx. The pain is a constant, the fatigue > too, but I am very lucky, after learning of some of > the others stories in this group, that I do not have > more severe disability. > > What side effects have you had? > > I had not side effects with the Plaquenil and it > worked well for almost 2-1/2 years before the RA > became aggressive and it just was not helping any > longer. Arava was the worst for me - stomach problems > with very sudden episodes of diarrhea, and I do me > sudden lol. I also began to experience peripheral > neuropathy after about 6 months on it with numbness > and tingling in my feet and hands. It was mainly > because of the PN that I stopped the drug because, all > in all, it did seem to be helping. I am able to > tolerate the Mtx well - hair thinning and loss is > about my worst side effect with that, in addition to > more fatigue the day after I take it. Bextra and > Lodine were not helpful. Celebrex was, but I stopped > taking it when the Vioxx scare came about. Enbrel > causes extreme fatigue the day after the shot but I > have had no problems with the injection, or reactions > to it other than a bit of bruising at times. Motrin > eventually caused a lot of stomach problems with > constant heartburn, and the Mobic has done very well > for me without those problems. Prednisone is a great > drug for the pain and inflammation, but does a number > on my mind - I get very serious and intense, and yet > also very busy, and hungry lol. I take it only when > really necessary. > > If you work on your feet or using your hands, how do > you deal with the > pain both during and after? (Sometimes I can barely > stand long enough > to cook my family's meals, as it hurts clear down > through my shins and > joints.) > > I had to give up the jewelry making which I miss very > much. I cannot sit or stand for very long without > increased pain, and cannot write for long either, so I > am not sure what kind of job I would be able to do for > very long. I did work two days a week for a while at > a friend's business where I was able to move around if > I needed to, but sometimes the phones would just not > stop, I was trapped in one position at the desk for > long periods of time, and by end of work would have a > lot of trouble walking because of increased SI pain. > That is what finally caused me to leave that job - the > SI pain became constant and sitting was painful. I > still want to do something, but finding the job that > would allow me to do what I need to not have pain or > reduce it is frustrating. > > So, this has become quite long and wordy - hope you > have hung in there through my novel lol. Hope it > helps. > > Kathe in CA > > > > > Kathe in CA > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 You've given a lot of helpful " real life " experience in this post. Thank you very much. A friend of mine has suggested Remicade. I read up on it a bit....ugh. I don't know about it. TB, liver, heart failure, sinus infections, all kinds of stuff. I have asthma and allergies anyway so how does one tell the difference, kwim? Plus it's a 2 hour sit through the getting the IV...I don't have childcare for 4 kids to do that. Guess we'll see after I get to the docs. Thanks again. Sara > Sara: > > Good for you wanting to be an RN - more nurses with > greater knowledge of this disease would be a great > benefit - Anyway, here goes on your questions - > > How long and how progressed is your RA? > > I was dx 6 years ago. I have what I feel is moderate > RA. I have daily pain and stiffness in my joints. It > began in my hands and wrists, and has since moved on > to involve all of my joints, with my feet, ankles, > wrists, elbows, and SI joint being my worst at this > time. I am able to continue, with the help of meds, > to pretty much take care, most days, of what I need to > take care of home, family, and the farm fur friends. > I go to Curves - I try for 3 times a week - but > sometimes the old bod just won't cooperate - and find > that it helps. I still can ride my horse from time to > time - getting up on a set of steps that my husband > made for me as I cannot get on the regular way any > longer, and my daughter takes care of the saddling for > me too. I feel that I am very lucky to be able to > continue doing it, as it is my favorite soul and > spirit therapy. I can't be on as long - an hour is > about my limit - but it is still for that time I feel > free of the RA - until dismounting, ouch, lol. > > What drug are you on? Is it injectible? > > Currently I am on Methotrexate 20 mg. weekly, Mobic, > Ultracet, and just recently began Enbrel. The Mtx and > Enbrel are supposed to be good together, so hopefully > with time I will begin to feel better with the > addition of Enbrel. I was doing Mtx injectible and it > was much more effective than the pills, but have been > having trouble finding it for the past several months. > The Enbrel is injectible. I also take Milk Thistle > and Folic Acid for Mtx side effects. I take other > meds too - antidepressant, blood pressure, and asthma. > > > Since being dx with RA, I have also been treated at > various times with Plaquenil, Motrin, Prednisone, > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > forgetting any ...... > > What therapies did you try before turning to Rx > therapy? > > At the time of my dx, I had been designing and making > jewelry, and had pain and stiffness on and off in my > wrists, hands and fingers which I put down to > over-doing my work. I was 45 and did not think at > that time of arthritis - I was too young, lol. Boy, > was I wrong. Anyway, I was taking Motrin when I had > pain, and that was doing fine until one evening when > my thumb joints became extremely painful, and by the > morning (after not sleeping much that night) my hands > were swollen, red-hot and painful balloons. It was > only at that time did I give any thought to arthritis, > and since my grandmother had RA, that was what I > figured I might have. In my ignorance of RA, I had no > idea, even with a family member with the disease, that > it was so much more than just a little joint pain. > That first flare was a real eye-opener. > > How long did it take for RA to progress to get you to > try Rx therapy? > > When my doctor saw me that first flare, she > immediately put me on Prednisone and Motrin. She did > blood work and when that came back RA positive, we sat > down and discussed various medications, and I was > started on Plaquenil. I credit her agressive > treatment of my RA with the fact that my RA is under > good control, and my life is still intact much as it > was before dx. The pain is a constant, the fatigue > too, but I am very lucky, after learning of some of > the others stories in this group, that I do not have > more severe disability. > > What side effects have you had? > > I had not side effects with the Plaquenil and it > worked well for almost 2-1/2 years before the RA > became aggressive and it just was not helping any > longer. Arava was the worst for me - stomach problems > with very sudden episodes of diarrhea, and I do me > sudden lol. I also began to experience peripheral > neuropathy after about 6 months on it with numbness > and tingling in my feet and hands. It was mainly > because of the PN that I stopped the drug because, all > in all, it did seem to be helping. I am able to > tolerate the Mtx well - hair thinning and loss is > about my worst side effect with that, in addition to > more fatigue the day after I take it. Bextra and > Lodine were not helpful. Celebrex was, but I stopped > taking it when the Vioxx scare came about. Enbrel > causes extreme fatigue the day after the shot but I > have had no problems with the injection, or reactions > to it other than a bit of bruising at times. Motrin > eventually caused a lot of stomach problems with > constant heartburn, and the Mobic has done very well > for me without those problems. Prednisone is a great > drug for the pain and inflammation, but does a number > on my mind - I get very serious and intense, and yet > also very busy, and hungry lol. I take it only when > really necessary. > > If you work on your feet or using your hands, how do > you deal with the > pain both during and after? (Sometimes I can barely > stand long enough > to cook my family's meals, as it hurts clear down > through my shins and > joints.) > > I had to give up the jewelry making which I miss very > much. I cannot sit or stand for very long without > increased pain, and cannot write for long either, so I > am not sure what kind of job I would be able to do for > very long. I did work two days a week for a while at > a friend's business where I was able to move around if > I needed to, but sometimes the phones would just not > stop, I was trapped in one position at the desk for > long periods of time, and by end of work would have a > lot of trouble walking because of increased SI pain. > That is what finally caused me to leave that job - the > SI pain became constant and sitting was painful. I > still want to do something, but finding the job that > would allow me to do what I need to not have pain or > reduce it is frustrating. > > So, this has become quite long and wordy - hope you > have hung in there through my novel lol. Hope it > helps. > > Kathe in CA > > > > > Kathe in CA > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 Sara: You're welcome. If you have any more questions, ask away. Have you tried Enbrel yet? Has your doctor discussed it with you? For my 2 cents, I would go for the Enbrel before any Remicade or Humira or Kineret. The Enbrel injection you give yourself at home, so there is not a long hospital visit. Enbrel has a longer track record, and does not stay in your system as long as the Remicade will. Therefore, if you get sick during the time that either drug is in your system, it would be worse if you were on Remicade. There are a few people on this board who were on that drug, got sick with various infections, and really had a struggle to get well again, even to the point of ending up in the hospital. Enbrel is working well for me, and I have asthma too with a tendency toward brochitis, etc. when I get a cold. What you would do, is if you feel you are getting sick, is to skip the next dose to give your body a chance to fight off the infection on its own, or get antibiotics if you need, and until you are well or off the antis, you need to discontinue the Enbrel. With Remicade, as it is in your system longer, I have read that the recovery is longer and harder. Please anyone else in the group with more experience with this, chime in and let me know if I am wrong with this, but I think I am right about it. Anyway, check with your doctor regarding Enbrel. All of this drugs have very nasty side effects told to you as part of the prescribing procedure - the chance of the very worst happening is very low, but they have to let you know about it. As far as liver enzymes, and other things they can check with blood work, this will be done when you are on certain medications, like Mtx. I get blood work every 8 weeks for liver enzymes and blood count, etc. Do be cautious about the meds you are considering, but don't let the side effects scare you off from trying something that could help you get your life back. Take care - Kathe in CA --- saralaughs02 <saralaughs02@...> wrote: > You've given a lot of helpful " real life " experience > in this post. > Thank you very much. > > A friend of mine has suggested Remicade. I read up > on it a > bit....ugh. I don't know about it. TB, liver, > heart failure, sinus > infections, all kinds of stuff. I have asthma and > allergies anyway > so how does one tell the difference, kwim? Plus > it's a 2 hour sit > through the getting the IV...I don't have childcare > for 4 kids to do > that. Guess we'll see after I get to the docs. > > Thanks again. > Sara > > > > Sara: > > > > Good for you wanting to be an RN - more nurses > with > > greater knowledge of this disease would be a great > > benefit - Anyway, here goes on your questions - > > > > How long and how progressed is your RA? > > > > I was dx 6 years ago. I have what I feel is > moderate > > RA. I have daily pain and stiffness in my joints. > It > > began in my hands and wrists, and has since moved > on > > to involve all of my joints, with my feet, ankles, > > wrists, elbows, and SI joint being my worst at > this > > time. I am able to continue, with the help of > meds, > > to pretty much take care, most days, of what I > need to > > take care of home, family, and the farm fur > friends. > > I go to Curves - I try for 3 times a week - but > > sometimes the old bod just won't cooperate - and > find > > that it helps. I still can ride my horse from > time to > > time - getting up on a set of steps that my > husband > > made for me as I cannot get on the regular way any > > longer, and my daughter takes care of the saddling > for > > me too. I feel that I am very lucky to be able to > > continue doing it, as it is my favorite soul and > > spirit therapy. I can't be on as long - an hour > is > > about my limit - but it is still for that time I > feel > > free of the RA - until dismounting, ouch, lol. > > > > What drug are you on? Is it injectible? > > > > Currently I am on Methotrexate 20 mg. weekly, > Mobic, > > Ultracet, and just recently began Enbrel. The Mtx > and > > Enbrel are supposed to be good together, so > hopefully > > with time I will begin to feel better with the > > addition of Enbrel. I was doing Mtx injectible and > it > > was much more effective than the pills, but have > been > > having trouble finding it for the past several > months. > > The Enbrel is injectible. I also take Milk > Thistle > > and Folic Acid for Mtx side effects. I take other > > meds too - antidepressant, blood pressure, and > asthma. > > > > > > Since being dx with RA, I have also been treated > at > > various times with Plaquenil, Motrin, Prednisone, > > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > > forgetting any ...... > > > > What therapies did you try before turning to Rx > > therapy? > > > > At the time of my dx, I had been designing and > making > > jewelry, and had pain and stiffness on and off in > my > > wrists, hands and fingers which I put down to > > over-doing my work. I was 45 and did not think at > > that time of arthritis - I was too young, lol. > Boy, > > was I wrong. Anyway, I was taking Motrin when I > had > > pain, and that was doing fine until one evening > when > > my thumb joints became extremely painful, and by > the > > morning (after not sleeping much that night) my > hands > > were swollen, red-hot and painful balloons. It > was > > only at that time did I give any thought to > arthritis, > > and since my grandmother had RA, that was what I > > figured I might have. In my ignorance of RA, I > had no > > idea, even with a family member with the disease, > that > > it was so much more than just a little joint pain. > > > That first flare was a real eye-opener. > > > > How long did it take for RA to progress to get you > to > > try Rx therapy? > > > > When my doctor saw me that first flare, she > > immediately put me on Prednisone and Motrin. She > did > > blood work and when that came back RA positive, we > sat > > down and discussed various medications, and I was > > started on Plaquenil. I credit her agressive > > treatment of my RA with the fact that my RA is > under > > good control, and my life is still intact much as > it > > was before dx. The pain is a constant, the > fatigue > > too, but I am very lucky, after learning of some > of > > the others stories in this group, that I do not > have > > more severe disability. > > > > What side effects have you had? > > > > I had not side effects with the Plaquenil and it > > worked well for almost 2-1/2 years before the RA > > became aggressive and it just was not helping any > > longer. Arava was the worst for me - stomach > problems > > with very sudden episodes of diarrhea, and I do me > > sudden lol. I also began to experience peripheral > > neuropathy after about 6 months on it with > numbness > > and tingling in my feet and hands. It was mainly > > because of the PN that I stopped the drug because, > all > > in all, it did seem to be helping. I am able to > > tolerate the Mtx well - hair thinning and loss is > > about my worst side effect with that, in addition > to > > more fatigue the day after I take it. Bextra and > > Lodine were not helpful. Celebrex was, but I > stopped > > taking it when the Vioxx scare came about. Enbrel > > causes extreme fatigue the day after the shot but > I > > have had no problems with the injection, or > reactions > > to it other than a bit of bruising at times. > Motrin > > eventually caused a lot of stomach problems with > > constant heartburn, and the Mobic has done very > well > > for me without those problems. Prednisone is a > great > > drug for the pain and inflammation, but does a > number > > on my mind - I get very serious and intense, and > yet > > also very busy, and hungry lol. I take it only > when > > really necessary. > > > > If you work on your feet or using your hands, how > do > > you deal with the > > pain both during and after? (Sometimes I can > barely > > stand long enough > > to cook my family's meals, as it hurts clear down > > through my shins and > > joints.) > > > > I had to give up the jewelry making which I miss > very > > much. I cannot sit or stand for very long without > > increased pain, and cannot write for long either, > so I > > am not sure what kind of job I would be able to do > for > > very long. I did work two days a week for a while > at > > a friend's business where I was able to move > around if > > I needed to, but sometimes the phones would just > not > > stop, I was trapped in one position at the desk > for > > long periods of time, and by end of work would > have a > > lot of trouble walking because of increased SI > pain. > > That is what finally caused me to leave that job - > the > > SI pain became constant and sitting was painful. > I > > still want to do something, but finding the job > that > > would allow me to do what I need to not have pain > or > > reduce it is frustrating. > > > > So, this has become quite long and wordy - hope > you > > have hung in there through my novel lol. Hope it > > helps. > > > > Kathe in CA > > > > > > > > > > Kathe in CA > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 Sara: You're welcome. If you have any more questions, ask away. Have you tried Enbrel yet? Has your doctor discussed it with you? For my 2 cents, I would go for the Enbrel before any Remicade or Humira or Kineret. The Enbrel injection you give yourself at home, so there is not a long hospital visit. Enbrel has a longer track record, and does not stay in your system as long as the Remicade will. Therefore, if you get sick during the time that either drug is in your system, it would be worse if you were on Remicade. There are a few people on this board who were on that drug, got sick with various infections, and really had a struggle to get well again, even to the point of ending up in the hospital. Enbrel is working well for me, and I have asthma too with a tendency toward brochitis, etc. when I get a cold. What you would do, is if you feel you are getting sick, is to skip the next dose to give your body a chance to fight off the infection on its own, or get antibiotics if you need, and until you are well or off the antis, you need to discontinue the Enbrel. With Remicade, as it is in your system longer, I have read that the recovery is longer and harder. Please anyone else in the group with more experience with this, chime in and let me know if I am wrong with this, but I think I am right about it. Anyway, check with your doctor regarding Enbrel. All of this drugs have very nasty side effects told to you as part of the prescribing procedure - the chance of the very worst happening is very low, but they have to let you know about it. As far as liver enzymes, and other things they can check with blood work, this will be done when you are on certain medications, like Mtx. I get blood work every 8 weeks for liver enzymes and blood count, etc. Do be cautious about the meds you are considering, but don't let the side effects scare you off from trying something that could help you get your life back. Take care - Kathe in CA --- saralaughs02 <saralaughs02@...> wrote: > You've given a lot of helpful " real life " experience > in this post. > Thank you very much. > > A friend of mine has suggested Remicade. I read up > on it a > bit....ugh. I don't know about it. TB, liver, > heart failure, sinus > infections, all kinds of stuff. I have asthma and > allergies anyway > so how does one tell the difference, kwim? Plus > it's a 2 hour sit > through the getting the IV...I don't have childcare > for 4 kids to do > that. Guess we'll see after I get to the docs. > > Thanks again. > Sara > > > > Sara: > > > > Good for you wanting to be an RN - more nurses > with > > greater knowledge of this disease would be a great > > benefit - Anyway, here goes on your questions - > > > > How long and how progressed is your RA? > > > > I was dx 6 years ago. I have what I feel is > moderate > > RA. I have daily pain and stiffness in my joints. > It > > began in my hands and wrists, and has since moved > on > > to involve all of my joints, with my feet, ankles, > > wrists, elbows, and SI joint being my worst at > this > > time. I am able to continue, with the help of > meds, > > to pretty much take care, most days, of what I > need to > > take care of home, family, and the farm fur > friends. > > I go to Curves - I try for 3 times a week - but > > sometimes the old bod just won't cooperate - and > find > > that it helps. I still can ride my horse from > time to > > time - getting up on a set of steps that my > husband > > made for me as I cannot get on the regular way any > > longer, and my daughter takes care of the saddling > for > > me too. I feel that I am very lucky to be able to > > continue doing it, as it is my favorite soul and > > spirit therapy. I can't be on as long - an hour > is > > about my limit - but it is still for that time I > feel > > free of the RA - until dismounting, ouch, lol. > > > > What drug are you on? Is it injectible? > > > > Currently I am on Methotrexate 20 mg. weekly, > Mobic, > > Ultracet, and just recently began Enbrel. The Mtx > and > > Enbrel are supposed to be good together, so > hopefully > > with time I will begin to feel better with the > > addition of Enbrel. I was doing Mtx injectible and > it > > was much more effective than the pills, but have > been > > having trouble finding it for the past several > months. > > The Enbrel is injectible. I also take Milk > Thistle > > and Folic Acid for Mtx side effects. I take other > > meds too - antidepressant, blood pressure, and > asthma. > > > > > > Since being dx with RA, I have also been treated > at > > various times with Plaquenil, Motrin, Prednisone, > > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > > forgetting any ...... > > > > What therapies did you try before turning to Rx > > therapy? > > > > At the time of my dx, I had been designing and > making > > jewelry, and had pain and stiffness on and off in > my > > wrists, hands and fingers which I put down to > > over-doing my work. I was 45 and did not think at > > that time of arthritis - I was too young, lol. > Boy, > > was I wrong. Anyway, I was taking Motrin when I > had > > pain, and that was doing fine until one evening > when > > my thumb joints became extremely painful, and by > the > > morning (after not sleeping much that night) my > hands > > were swollen, red-hot and painful balloons. It > was > > only at that time did I give any thought to > arthritis, > > and since my grandmother had RA, that was what I > > figured I might have. In my ignorance of RA, I > had no > > idea, even with a family member with the disease, > that > > it was so much more than just a little joint pain. > > > That first flare was a real eye-opener. > > > > How long did it take for RA to progress to get you > to > > try Rx therapy? > > > > When my doctor saw me that first flare, she > > immediately put me on Prednisone and Motrin. She > did > > blood work and when that came back RA positive, we > sat > > down and discussed various medications, and I was > > started on Plaquenil. I credit her agressive > > treatment of my RA with the fact that my RA is > under > > good control, and my life is still intact much as > it > > was before dx. The pain is a constant, the > fatigue > > too, but I am very lucky, after learning of some > of > > the others stories in this group, that I do not > have > > more severe disability. > > > > What side effects have you had? > > > > I had not side effects with the Plaquenil and it > > worked well for almost 2-1/2 years before the RA > > became aggressive and it just was not helping any > > longer. Arava was the worst for me - stomach > problems > > with very sudden episodes of diarrhea, and I do me > > sudden lol. I also began to experience peripheral > > neuropathy after about 6 months on it with > numbness > > and tingling in my feet and hands. It was mainly > > because of the PN that I stopped the drug because, > all > > in all, it did seem to be helping. I am able to > > tolerate the Mtx well - hair thinning and loss is > > about my worst side effect with that, in addition > to > > more fatigue the day after I take it. Bextra and > > Lodine were not helpful. Celebrex was, but I > stopped > > taking it when the Vioxx scare came about. Enbrel > > causes extreme fatigue the day after the shot but > I > > have had no problems with the injection, or > reactions > > to it other than a bit of bruising at times. > Motrin > > eventually caused a lot of stomach problems with > > constant heartburn, and the Mobic has done very > well > > for me without those problems. Prednisone is a > great > > drug for the pain and inflammation, but does a > number > > on my mind - I get very serious and intense, and > yet > > also very busy, and hungry lol. I take it only > when > > really necessary. > > > > If you work on your feet or using your hands, how > do > > you deal with the > > pain both during and after? (Sometimes I can > barely > > stand long enough > > to cook my family's meals, as it hurts clear down > > through my shins and > > joints.) > > > > I had to give up the jewelry making which I miss > very > > much. I cannot sit or stand for very long without > > increased pain, and cannot write for long either, > so I > > am not sure what kind of job I would be able to do > for > > very long. I did work two days a week for a while > at > > a friend's business where I was able to move > around if > > I needed to, but sometimes the phones would just > not > > stop, I was trapped in one position at the desk > for > > long periods of time, and by end of work would > have a > > lot of trouble walking because of increased SI > pain. > > That is what finally caused me to leave that job - > the > > SI pain became constant and sitting was painful. > I > > still want to do something, but finding the job > that > > would allow me to do what I need to not have pain > or > > reduce it is frustrating. > > > > So, this has become quite long and wordy - hope > you > > have hung in there through my novel lol. Hope it > > helps. > > > > Kathe in CA > > > > > > > > > > Kathe in CA > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 The only things I've tried is the OTC Aleve, which I still take, the Rx 500mg Naproxen (Aleve), and 800mg Ibuprofen. That's it. I decided to stick with the OTC Aleve bc it works wonders for pain, among other things. (I used to take it for cramps but I had EA done in November so I don't have periods anymore.) I have been to the RA doc yet, ever. I've been hearing a lot about Enbrel on TV and on here. I'm going to look that info up now. I just refuse to do more harm to myself w/ side effects than with the disease itself. KWIM? I realize they have to tell you stuff like, " You could die while taking this drug " but what I'm really looking for is real life experiences. They are more accurate than some FDA controlled study, which has its pockets well lined from the makers of the drugs to begin with. I don't trust the FDA at all. I want real life experiences to be my predictor, kwim? Sara > > > Sara: > > > > > > Good for you wanting to be an RN - more nurses > > with > > > greater knowledge of this disease would be a great > > > benefit - Anyway, here goes on your questions - > > > > > > How long and how progressed is your RA? > > > > > > I was dx 6 years ago. I have what I feel is > > moderate > > > RA. I have daily pain and stiffness in my joints. > > It > > > began in my hands and wrists, and has since moved > > on > > > to involve all of my joints, with my feet, ankles, > > > wrists, elbows, and SI joint being my worst at > > this > > > time. I am able to continue, with the help of > > meds, > > > to pretty much take care, most days, of what I > > need to > > > take care of home, family, and the farm fur > > friends. > > > I go to Curves - I try for 3 times a week - but > > > sometimes the old bod just won't cooperate - and > > find > > > that it helps. I still can ride my horse from > > time to > > > time - getting up on a set of steps that my > > husband > > > made for me as I cannot get on the regular way any > > > longer, and my daughter takes care of the saddling > > for > > > me too. I feel that I am very lucky to be able to > > > continue doing it, as it is my favorite soul and > > > spirit therapy. I can't be on as long - an hour > > is > > > about my limit - but it is still for that time I > > feel > > > free of the RA - until dismounting, ouch, lol. > > > > > > What drug are you on? Is it injectible? > > > > > > Currently I am on Methotrexate 20 mg. weekly, > > Mobic, > > > Ultracet, and just recently began Enbrel. The Mtx > > and > > > Enbrel are supposed to be good together, so > > hopefully > > > with time I will begin to feel better with the > > > addition of Enbrel. I was doing Mtx injectible and > > it > > > was much more effective than the pills, but have > > been > > > having trouble finding it for the past several > > months. > > > The Enbrel is injectible. I also take Milk > > Thistle > > > and Folic Acid for Mtx side effects. I take other > > > meds too - antidepressant, blood pressure, and > > asthma. > > > > > > > > > Since being dx with RA, I have also been treated > > at > > > various times with Plaquenil, Motrin, Prednisone, > > > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > > > forgetting any ...... > > > > > > What therapies did you try before turning to Rx > > > therapy? > > > > > > At the time of my dx, I had been designing and > > making > > > jewelry, and had pain and stiffness on and off in > > my > > > wrists, hands and fingers which I put down to > > > over-doing my work. I was 45 and did not think at > > > that time of arthritis - I was too young, lol. > > Boy, > > > was I wrong. Anyway, I was taking Motrin when I > > had > > > pain, and that was doing fine until one evening > > when > > > my thumb joints became extremely painful, and by > > the > > > morning (after not sleeping much that night) my > > hands > > > were swollen, red-hot and painful balloons. It > > was > > > only at that time did I give any thought to > > arthritis, > > > and since my grandmother had RA, that was what I > > > figured I might have. In my ignorance of RA, I > > had no > > > idea, even with a family member with the disease, > > that > > > it was so much more than just a little joint pain. > > > > > That first flare was a real eye-opener. > > > > > > How long did it take for RA to progress to get you > > to > > > try Rx therapy? > > > > > > When my doctor saw me that first flare, she > > > immediately put me on Prednisone and Motrin. She > > did > > > blood work and when that came back RA positive, we > > sat > > > down and discussed various medications, and I was > > > started on Plaquenil. I credit her agressive > > > treatment of my RA with the fact that my RA is > > under > > > good control, and my life is still intact much as > > it > > > was before dx. The pain is a constant, the > > fatigue > > > too, but I am very lucky, after learning of some > > of > > > the others stories in this group, that I do not > > have > > > more severe disability. > > > > > > What side effects have you had? > > > > > > I had not side effects with the Plaquenil and it > > > worked well for almost 2-1/2 years before the RA > > > became aggressive and it just was not helping any > > > longer. Arava was the worst for me - stomach > > problems > > > with very sudden episodes of diarrhea, and I do me > > > sudden lol. I also began to experience peripheral > > > neuropathy after about 6 months on it with > > numbness > > > and tingling in my feet and hands. It was mainly > > > because of the PN that I stopped the drug because, > > all > > > in all, it did seem to be helping. I am able to > > > tolerate the Mtx well - hair thinning and loss is > > > about my worst side effect with that, in addition > > to > > > more fatigue the day after I take it. Bextra and > > > Lodine were not helpful. Celebrex was, but I > > stopped > > > taking it when the Vioxx scare came about. Enbrel > > > causes extreme fatigue the day after the shot but > > I > > > have had no problems with the injection, or > > reactions > > > to it other than a bit of bruising at times. > > Motrin > > > eventually caused a lot of stomach problems with > > > constant heartburn, and the Mobic has done very > > well > > > for me without those problems. Prednisone is a > > great > > > drug for the pain and inflammation, but does a > > number > > > on my mind - I get very serious and intense, and > > yet > > > also very busy, and hungry lol. I take it only > > when > > > really necessary. > > > > > > If you work on your feet or using your hands, how > > do > > > you deal with the > > > pain both during and after? (Sometimes I can > > barely > > > stand long enough > > > to cook my family's meals, as it hurts clear down > > > through my shins and > > > joints.) > > > > > > I had to give up the jewelry making which I miss > > very > > > much. I cannot sit or stand for very long without > > > increased pain, and cannot write for long either, > > so I > > > am not sure what kind of job I would be able to do > > for > > > very long. I did work two days a week for a while > > at > > > a friend's business where I was able to move > > around if > > > I needed to, but sometimes the phones would just > > not > > > stop, I was trapped in one position at the desk > > for > > > long periods of time, and by end of work would > > have a > > > lot of trouble walking because of increased SI > > pain. > > > That is what finally caused me to leave that job - > > the > > > SI pain became constant and sitting was painful. > > I > > > still want to do something, but finding the job > > that > > > would allow me to do what I need to not have pain > > or > > > reduce it is frustrating. > > > > > > So, this has become quite long and wordy - hope > > you > > > have hung in there through my novel lol. Hope it > > > helps. > > > > > > Kathe in CA > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 The only things I've tried is the OTC Aleve, which I still take, the Rx 500mg Naproxen (Aleve), and 800mg Ibuprofen. That's it. I decided to stick with the OTC Aleve bc it works wonders for pain, among other things. (I used to take it for cramps but I had EA done in November so I don't have periods anymore.) I have been to the RA doc yet, ever. I've been hearing a lot about Enbrel on TV and on here. I'm going to look that info up now. I just refuse to do more harm to myself w/ side effects than with the disease itself. KWIM? I realize they have to tell you stuff like, " You could die while taking this drug " but what I'm really looking for is real life experiences. They are more accurate than some FDA controlled study, which has its pockets well lined from the makers of the drugs to begin with. I don't trust the FDA at all. I want real life experiences to be my predictor, kwim? Sara > > > Sara: > > > > > > Good for you wanting to be an RN - more nurses > > with > > > greater knowledge of this disease would be a great > > > benefit - Anyway, here goes on your questions - > > > > > > How long and how progressed is your RA? > > > > > > I was dx 6 years ago. I have what I feel is > > moderate > > > RA. I have daily pain and stiffness in my joints. > > It > > > began in my hands and wrists, and has since moved > > on > > > to involve all of my joints, with my feet, ankles, > > > wrists, elbows, and SI joint being my worst at > > this > > > time. I am able to continue, with the help of > > meds, > > > to pretty much take care, most days, of what I > > need to > > > take care of home, family, and the farm fur > > friends. > > > I go to Curves - I try for 3 times a week - but > > > sometimes the old bod just won't cooperate - and > > find > > > that it helps. I still can ride my horse from > > time to > > > time - getting up on a set of steps that my > > husband > > > made for me as I cannot get on the regular way any > > > longer, and my daughter takes care of the saddling > > for > > > me too. I feel that I am very lucky to be able to > > > continue doing it, as it is my favorite soul and > > > spirit therapy. I can't be on as long - an hour > > is > > > about my limit - but it is still for that time I > > feel > > > free of the RA - until dismounting, ouch, lol. > > > > > > What drug are you on? Is it injectible? > > > > > > Currently I am on Methotrexate 20 mg. weekly, > > Mobic, > > > Ultracet, and just recently began Enbrel. The Mtx > > and > > > Enbrel are supposed to be good together, so > > hopefully > > > with time I will begin to feel better with the > > > addition of Enbrel. I was doing Mtx injectible and > > it > > > was much more effective than the pills, but have > > been > > > having trouble finding it for the past several > > months. > > > The Enbrel is injectible. I also take Milk > > Thistle > > > and Folic Acid for Mtx side effects. I take other > > > meds too - antidepressant, blood pressure, and > > asthma. > > > > > > > > > Since being dx with RA, I have also been treated > > at > > > various times with Plaquenil, Motrin, Prednisone, > > > Lodine, Celebrex, Arava, and Bextra. Hope I'm not > > > forgetting any ...... > > > > > > What therapies did you try before turning to Rx > > > therapy? > > > > > > At the time of my dx, I had been designing and > > making > > > jewelry, and had pain and stiffness on and off in > > my > > > wrists, hands and fingers which I put down to > > > over-doing my work. I was 45 and did not think at > > > that time of arthritis - I was too young, lol. > > Boy, > > > was I wrong. Anyway, I was taking Motrin when I > > had > > > pain, and that was doing fine until one evening > > when > > > my thumb joints became extremely painful, and by > > the > > > morning (after not sleeping much that night) my > > hands > > > were swollen, red-hot and painful balloons. It > > was > > > only at that time did I give any thought to > > arthritis, > > > and since my grandmother had RA, that was what I > > > figured I might have. In my ignorance of RA, I > > had no > > > idea, even with a family member with the disease, > > that > > > it was so much more than just a little joint pain. > > > > > That first flare was a real eye-opener. > > > > > > How long did it take for RA to progress to get you > > to > > > try Rx therapy? > > > > > > When my doctor saw me that first flare, she > > > immediately put me on Prednisone and Motrin. She > > did > > > blood work and when that came back RA positive, we > > sat > > > down and discussed various medications, and I was > > > started on Plaquenil. I credit her agressive > > > treatment of my RA with the fact that my RA is > > under > > > good control, and my life is still intact much as > > it > > > was before dx. The pain is a constant, the > > fatigue > > > too, but I am very lucky, after learning of some > > of > > > the others stories in this group, that I do not > > have > > > more severe disability. > > > > > > What side effects have you had? > > > > > > I had not side effects with the Plaquenil and it > > > worked well for almost 2-1/2 years before the RA > > > became aggressive and it just was not helping any > > > longer. Arava was the worst for me - stomach > > problems > > > with very sudden episodes of diarrhea, and I do me > > > sudden lol. I also began to experience peripheral > > > neuropathy after about 6 months on it with > > numbness > > > and tingling in my feet and hands. It was mainly > > > because of the PN that I stopped the drug because, > > all > > > in all, it did seem to be helping. I am able to > > > tolerate the Mtx well - hair thinning and loss is > > > about my worst side effect with that, in addition > > to > > > more fatigue the day after I take it. Bextra and > > > Lodine were not helpful. Celebrex was, but I > > stopped > > > taking it when the Vioxx scare came about. Enbrel > > > causes extreme fatigue the day after the shot but > > I > > > have had no problems with the injection, or > > reactions > > > to it other than a bit of bruising at times. > > Motrin > > > eventually caused a lot of stomach problems with > > > constant heartburn, and the Mobic has done very > > well > > > for me without those problems. Prednisone is a > > great > > > drug for the pain and inflammation, but does a > > number > > > on my mind - I get very serious and intense, and > > yet > > > also very busy, and hungry lol. I take it only > > when > > > really necessary. > > > > > > If you work on your feet or using your hands, how > > do > > > you deal with the > > > pain both during and after? (Sometimes I can > > barely > > > stand long enough > > > to cook my family's meals, as it hurts clear down > > > through my shins and > > > joints.) > > > > > > I had to give up the jewelry making which I miss > > very > > > much. I cannot sit or stand for very long without > > > increased pain, and cannot write for long either, > > so I > > > am not sure what kind of job I would be able to do > > for > > > very long. I did work two days a week for a while > > at > > > a friend's business where I was able to move > > around if > > > I needed to, but sometimes the phones would just > > not > > > stop, I was trapped in one position at the desk > > for > > > long periods of time, and by end of work would > > have a > > > lot of trouble walking because of increased SI > > pain. > > > That is what finally caused me to leave that job - > > the > > > SI pain became constant and sitting was painful. > > I > > > still want to do something, but finding the job > > that > > > would allow me to do what I need to not have pain > > or > > > reduce it is frustrating. > > > > > > So, this has become quite long and wordy - hope > > you > > > have hung in there through my novel lol. Hope it > > > helps. > > > > > > Kathe in CA > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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