Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 , You can talk anytime, we all want to help if we can. I hate it that you are in so much pain and at such a low point. I hope Enbrel is your miracle drug. It is good that you are still trying to keep a sense of humor. I rely so much on this group and never thought that I would. I sought it out for information and now find myself involved. Please let us know how it goes with the Enbrel and I will say a special prayer for you tonight. Shirley --- In , " brendabennion " <bennion8@...> wrote: > > I don't post much, though I read the posts and appreciate so many of > you. > > I have been on Mtx shots, hydroxychloriquin, and sulfasalazine. I have > just felt so sick and tired for the year I have been on them, and my > blood tests were not coming back completely normal. So my doctor has > had me stop the hydorxychloroquin and sufasalazine, and keep the mtx > shots once a week. I have had, off and on, a cough but no shortness of > breath or anything. He is adding Enbrel. I just got the Enbrel > yesterday, I've had to stay off the other drugs and can take my first > shot tomorrow. > > I have felt scared, especially with the minor cough, but excited as I > have read the things some of you have said about getting a new life > with this drug! I don't want to feel sick and tired anymore. > > I haven't been able to walk up and down stairs, my hands are always > stiff and in pain... I can't really write anymore, and since I had to > quit the other 2 drugs for a week, I see my RA has actually spread. It > was in my knees, ankles, and hands. Now my hips and shoulders get sore. > And, can you get it in your spine? For a few days my spine hurt! I am > only 5' tall and I am overweight. It has crept up over the years as I > have given birth to 6 children. But since I have been so inactive due > to being sick this past year, I am now 60 pounds overweight. So I have > wondered, is that my problem or is it the drugs/disease? My doctor > tells me it is the disease but I still just feel awful! > > So I was telling my adult daughter my fears about the Enbrel... with > the cough and the warnings the pharmacist gave me, will I get sick? I > finally joked, " I don't want to live this way, in fear. I am going to > take it and if it helps, hooray!! If it makes me sick or I die, so be > it! " She expressed much concern. I told her I was exaggerating, the > point is, I just want to move forward and enjoy life again..then I > joked... " And life is chocolate. " She smiled. Then I added, " With each > shot, if you take one chocolate it minimizes the side effects of the > drug " . She wondered if I were serious or pulling her leg, especially > when I suggested that the pharmacist should dispense a bag of Hersheys > kisses with each perscription fill! She caught on and we laughed! > > Basically, I just don't want to worry anymore. I just want to LIVE! > I'm tired of fighting this disease... I want to be normal again! Or at > least just LIVE again! I've been depressed, sick, not able to do > anything for a total of 2-3 years. Half the time I have been bedridden. > When I am not, I am exhausted so easily. I want to throw it off, forget > about it, and move on. I'm used to being a mover and a shaker... until > the last few years. So I pin my hopes on the Enbrel. > > Thanks for letting me " talk " . This board is nice... I can't talk to > friends and family like you all do here... it isn't pleasant for them > to hear so I don't talk at all, really, except to say, " I need to go > lie down " or, we just went camping and I have been off my drugs, so I > couldn't hike up a mountain with them. I told them they had to find an > easier hike/walk for me. I did let them know I was hurting and my legs > and knees were to stiff to hike uphill. We rented a cabin that had this > really steep stairway up to the bedrooms.... I would laugh everytime I > had to climb them.... because I couldn't! I never thought to tell the > company we rented from that we needed a place that was single- level! I > don't want to say, " Well, I am disabled because I have RA " . I have > never thought of myself as " disabled " before. I still don't. I don't > know what I see myself as.... just a 45 year old woman who is > overweight and has some aches, I guess. > > Anyway, thanks again.... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hi I don't post much either, but I wanted to let you know I started enbrel 2 weeks ago after several weeks of mtx inj without as much improvement as I wanted. So I still take the mtx. The enbrel says a few people see results in 2 weeks most in 3mo. I took the shot on Mon. and tues morning at 10am I could make a fist with my right hand. I havent done that in almost a year. I'm not saying I don't still get stiff but I consider enbrel a miracle and I hope it stays that way. For me everyday is different some days my fingers don't bend until noon, but they do it and they don't hurt. My feet have felt better since the mtx but I think the enbrel has helped my hips. I think the enbrel shots hurt just a warning, but not enough to stop taking them. Hope enbrel is your miracle as well. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Diane (and all), Thank you for sharing your experience with Enbrel, I needed to hear that! It sounds like you had immediate results! What you said about your hands really struck home, but wow! I sounds like the RA has really made your hands suffer! My hands are always stiff, even with the drugs I have been on, but I can still make a fist. I think I am losing the use of my thumbs, though. My mother had RA, too, as her sister did. My mother used to love to wash the dishes just to soak her hands. She would run the water as hot as she could and just soak them. Now that I have this, I understand how good that felt! I do the same thing... sit there with my hands under the hot running water.... aaaaa! Have you ever done that? It feels so good! In the past sometimes I can't scrub the dishes.... I have an adorable teenage son, though, who has run to the rescue before saying, " I got it, mom! " while jumping up and running to the rescue! I am so glad this has been a blessing for you.... and it gives me hope! My biggest challenge has been walking, though I am sure others have it so much worse. I have to lean against a wall to walk up and down the stairs in my house. But boy, I read what others on here have been through... I don't know how all of you have done it. You have all suffered so long, and are going through so much. I stand in awe of everyones strength and sense of humor... wow! I still will have to take the mtx shots, too. It has never bothered me to take them, I never feel them. Thanks for the warning about the Enbrel shots. Guess I will find out today how much they hurt. Thank you again for taking the time to post...you were kind and generous to take the time to share your wisdom. I pray you have a good day! > > Hi I don't post much either, but I wanted to let you know I started > enbrel 2 weeks ago after several weeks of mtx inj without as much > improvement as I wanted. So I still take the mtx. The enbrel says a > few people see results in 2 weeks most in 3mo. I took the shot on Mon. > and tues morning at 10am I could make a fist with my right hand. I > havent done that in almost a year. I'm not saying I don't still get > stiff but I consider enbrel a miracle and I hope it stays that way. > For me everyday is different some days my fingers don't bend until > noon, but they do it and they don't hurt. My feet have felt better > since the mtx but I think the enbrel has helped my hips. I think the > enbrel shots hurt just a warning, but not enough to stop taking them. > Hope enbrel is your miracle as well. > Diane > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Shirley, Thank you so much for the kind words, and for offering to pray. I am a firm believer in prayer! There have been days that I have felt so horrible that it was all I could resort to. I have come into my room, wanting to be able to do for my family but unable to cope, and lay down and prayed for an hour or more. He has never failed me. But I am blessed.... though this has occasionally gotten me down, and the realization that this is a life-long battle, I don't have things so bad! I have an incredible husband, and 5 living children that are the joy of my life. And they are doing well. We have our struggles, life isn't perfect.... but it is good. I am amazed at all those on this board have been through, the wisdom all of you have is amazing. I am so greatful for this support group! I pray you have a good day, > > > > I don't post much, though I read the posts and appreciate so many > of > > you. > > > > I have been on Mtx shots, hydroxychloriquin, and sulfasalazine. I > have > > just felt so sick and tired for the year I have been on them, and > my > > blood tests were not coming back completely normal. So my doctor > has > > had me stop the hydorxychloroquin and sufasalazine, and keep the > mtx > > shots once a week. I have had, off and on, a cough but no > shortness of > > breath or anything. He is adding Enbrel. I just got the Enbrel > > yesterday, I've had to stay off the other drugs and can take my > first > > shot tomorrow. > > > > I have felt scared, especially with the minor cough, but excited > as I > > have read the things some of you have said about getting a new > life > > with this drug! I don't want to feel sick and tired anymore. > > > > I haven't been able to walk up and down stairs, my hands are > always > > stiff and in pain... I can't really write anymore, and since I had > to > > quit the other 2 drugs for a week, I see my RA has actually > spread. It > > was in my knees, ankles, and hands. Now my hips and shoulders get > sore. > > And, can you get it in your spine? For a few days my spine hurt! I > am > > only 5' tall and I am overweight. It has crept up over the years > as I > > have given birth to 6 children. But since I have been so inactive > due > > to being sick this past year, I am now 60 pounds overweight. So I > have > > wondered, is that my problem or is it the drugs/disease? My doctor > > tells me it is the disease but I still just feel awful! > > > > So I was telling my adult daughter my fears about the Enbrel... > with > > the cough and the warnings the pharmacist gave me, will I get sick? > I > > finally joked, " I don't want to live this way, in fear. I am going > to > > take it and if it helps, hooray!! If it makes me sick or I die, so > be > > it! " She expressed much concern. I told her I was exaggerating, > the > > point is, I just want to move forward and enjoy life again..then > I > > joked... " And life is chocolate. " She smiled. Then I added, " With > each > > shot, if you take one chocolate it minimizes the side effects of > the > > drug " . She wondered if I were serious or pulling her leg, > especially > > when I suggested that the pharmacist should dispense a bag of > Hersheys > > kisses with each perscription fill! She caught on and we laughed! > > > > Basically, I just don't want to worry anymore. I just want to > LIVE! > > I'm tired of fighting this disease... I want to be normal again! > Or at > > least just LIVE again! I've been depressed, sick, not able to do > > anything for a total of 2-3 years. Half the time I have been > bedridden. > > When I am not, I am exhausted so easily. I want to throw it off, > forget > > about it, and move on. I'm used to being a mover and a shaker... > until > > the last few years. So I pin my hopes on the Enbrel. > > > > Thanks for letting me " talk " . This board is nice... I can't talk > to > > friends and family like you all do here... it isn't pleasant for > them > > to hear so I don't talk at all, really, except to say, " I need to > go > > lie down " or, we just went camping and I have been off my drugs, > so I > > couldn't hike up a mountain with them. I told them they had to > find an > > easier hike/walk for me. I did let them know I was hurting and my > legs > > and knees were to stiff to hike uphill. We rented a cabin that had > this > > really steep stairway up to the bedrooms.... I would laugh > everytime I > > had to climb them.... because I couldn't! I never thought to tell > the > > company we rented from that we needed a place that was single- > level! I > > don't want to say, " Well, I am disabled because I have RA " . I have > > never thought of myself as " disabled " before. I still don't. I > don't > > know what I see myself as.... just a 45 year old woman who is > > overweight and has some aches, I guess. > > > > Anyway, thanks again.... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Good Luck today!!! -- In , " brendabennion " <bennion8@...> wrote: > > Diane (and all), > Thank you for sharing your experience with Enbrel, I needed to hear > that! It sounds like you had immediate results! What you said about > your hands really struck home, but wow! I sounds like the RA has really > made your hands suffer! My hands are always stiff, even with the drugs > I have been on, but I can still make a fist. I think I am losing the > use of my thumbs, though. My mother had RA, too, as her sister did. My > mother used to love to wash the dishes just to soak her hands. She > would run the water as hot as she could and just soak them. Now that I > have this, I understand how good that felt! I do the same thing... sit > there with my hands under the hot running water.... aaaaa! Have you > ever done that? It feels so good! In the past sometimes I can't scrub > the dishes.... I have an adorable teenage son, though, who has run to > the rescue before saying, " I got it, mom! " while jumping up and running > to the rescue! > I am so glad this has been a blessing for you.... and it gives me > hope! My biggest challenge has been walking, though I am sure others > have it so much worse. I have to lean against a wall to walk up and > down the stairs in my house. But boy, I read what others on here have > been through... I don't know how all of you have done it. You have all > suffered so long, and are going through so much. I stand in awe of > everyones strength and sense of humor... wow! > I still will have to take the mtx shots, too. It has never bothered > me to take them, I never feel them. Thanks for the warning about the > Enbrel shots. Guess I will find out today how much they hurt. > Thank you again for taking the time to post...you were kind and > generous to take the time to share your wisdom. I pray you have a good > day! > > > > > > > > > Hi I don't post much either, but I wanted to let you know I started > > enbrel 2 weeks ago after several weeks of mtx inj without as much > > improvement as I wanted. So I still take the mtx. The enbrel says a > > few people see results in 2 weeks most in 3mo. I took the shot on > Mon. > > and tues morning at 10am I could make a fist with my right hand. I > > havent done that in almost a year. I'm not saying I don't still get > > stiff but I consider enbrel a miracle and I hope it stays that way. > > For me everyday is different some days my fingers don't bend until > > noon, but they do it and they don't hurt. My feet have felt better > > since the mtx but I think the enbrel has helped my hips. I think the > > enbrel shots hurt just a warning, but not enough to stop taking > them. > > Hope enbrel is your miracle as well. > > Diane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 , I am so glad you are getting to start your new medication. I don't know if others are like me but each time I have greater hopes than the last one. I know we will hit on the right one for me. I am trying to get everything in order so that I can start Enbrel next week. I had my third mammogram this year, yesterday. Now they want an untrasound. The earliest they could do it is Wednesday at 1pm. That should still give me time to get my first shot by Friday. My rheummy won't let me start until she knows that it isn't cancer. I am not the least worried, I know that it will be OK. I am just tired of all the mashing and pinching! Please, let us know how you do with your first shot. I want it NOT to be a bad experience for you and would like to know what it was like. Good Luck, Shirley > -- In , " brendabennion " <bennion8@> > wrote: > > > > Diane (and all), > > Thank you for sharing your experience with Enbrel, I needed to > hear > > that! It sounds like you had immediate results! What you said about > > your hands really struck home, but wow! I sounds like the RA has > really > > made your hands suffer! My hands are always stiff, even with the > drugs > > I have been on, but I can still make a fist. I think I am losing > the > > use of my thumbs, though. My mother had RA, too, as her sister did. > My > > mother used to love to wash the dishes just to soak her hands. She > > would run the water as hot as she could and just soak them. Now > that I > > have this, I understand how good that felt! I do the same thing... > sit > > there with my hands under the hot running water.... aaaaa! Have you > > ever done that? It feels so good! In the past sometimes I can't > scrub > > the dishes.... I have an adorable teenage son, though, who has run > to > > the rescue before saying, " I got it, mom! " while jumping up and > running > > to the rescue! > > I am so glad this has been a blessing for you.... and it gives > me > > hope! My biggest challenge has been walking, though I am sure > others > > have it so much worse. I have to lean against a wall to walk up and > > down the stairs in my house. But boy, I read what others on here > have > > been through... I don't know how all of you have done it. You have > all > > suffered so long, and are going through so much. I stand in awe of > > everyones strength and sense of humor... wow! > > I still will have to take the mtx shots, too. It has never > bothered > > me to take them, I never feel them. Thanks for the warning about > the > > Enbrel shots. Guess I will find out today how much they hurt. > > Thank you again for taking the time to post...you were kind and > > generous to take the time to share your wisdom. I pray you have a > good > > day! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi and group, I so relate to your story about how the meds make you feel,however,if you don't take the meds then the lovely RA and FMS rear their even uglier head.I also get so tired of explaining to family members why I need to lay down,or why I can't do the shopping thing or outing for the day.If you look at me you would not see anything wrong.I limp when I walk but I feel like people are looking at me like " whats wrong with her,she doesnt look sick " .I take methetrexate and sulfasalazine.I have been the Plaquenil and Arava route without success.I have an insurance company that will not pay for biologics and my doc originally wanted to try Enbrel and then Orencia but I cant afford them without help from the insurance company.I remember when my rheumy started me on the sulfasalazine and the pharmacist told me how toxic it was with the methetrexate and I delayed starting because I was so scared.My rheumy told me RA was toxic and as much as I hate it evertime I take the meds,I know I have to try to get control of my life again.Thank you all for being there for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 I started Enbrel a week ago yesterday, and this was the first week since March that I did not have a single flare. I'm chalking it up to coincidence as I've heard it takes two weeks for some people to feel the effects. I am also on Mtx, plaquenil, folic acid, and 10 mg of prednisone. I've been trying to wean off of prednisone for months now, but as soon as I dip below 15 mg I start flaring big time. The doctor wants me to stay at 10 mg for another few weeks and then start weaning off. That will be the big test for Enbrel. I've got my fingers crossed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 --- In , " ksanders58 " <ksanders58@...> wrote: and Group; I know what you mean. I look fine. Yet the pain is aweful. I am feeling pretty good tonight. The prednisone is great. All the prayers are in and God must of said its enough. I said not more than you can bear Clora. I start humira in a few weeks. I can't stay on prednisone very long according to my rheumy cause of my other illnesses. Some of my family thinks I became very lazy haaaaaa. I don't worry about what they think. My mom and husband knows how I feel and thats ok for me. For many years I was in pain and they were the only ones to believe me. I always seem to find away with this pain. I am on sulfasalazine, plaquenil and prednisone. Right now the prednisone is working. I have pain patchs too. I take a lot of other meds for other illneses. Yet I only look over weight lol. I park in the handicaap parking. People look at me shaking their heads at me. I know what I know. lol. I tried other meds that broke me out. I hope the humira works. I am praying. God Bless everyone. gentle hugs to everyone Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Clora and Group, I get the same nods when I park in the handicap spot and some family members think I am so much better because of the weight gain.They think extra weight means health.My husband is my rock.He knows the DAILY crap I endure.Thanks for your input.Hope everyone is having a good evening. > > > and Group; > > I know what you mean. I look fine. Yet the pain is aweful. I am > feeling pretty good tonight. The prednisone is great. All the > prayers are in and God must of said its enough. I said not more than > you can bear Clora. I start humira in a few weeks. I can't stay on > prednisone very long according to my rheumy cause of my other > illnesses. > > Some of my family thinks I became very lazy haaaaaa. I don't worry > about what they think. My mom and husband knows how I feel and > thats ok for me. For many years I was in pain and they were the > only ones to believe me. I always seem to find away with this pain. > > I am on sulfasalazine, plaquenil and prednisone. Right now the > prednisone is working. I have pain patchs too. I take a lot of > other meds for other illneses. Yet I only look over weight lol. I > park in the handicaap parking. People look at me shaking their > heads at me. I know what I know. lol. > > I tried other meds that broke me out. I hope the humira works. I am > praying. God Bless everyone. > > gentle hugs to everyone > Clora > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Wow..do I get nasty looks when I park in handicapped!! My problem is that I need to be able to open my door completely in order to swing my right leg out (neuropathy) so if I can get a regular spot at the end of a row, I'll take that. But if I can't, I will use the handicapped spots. If I do say so myself (HA HA), I look pretty good and look younger than my true mid 50's so people right away assume there's nothing wrong with me. I will actually limp walking to and from the parking spot even if my leg feels well that day in order to let people know that YES, I do have a handicap. Once when I went to the library, I forgot to put the blue hanging placard on the mirror. When I came out, I found a note under my windshield wiper. I didn't read the whole thing, but it started out.. " You uncaring piece of sh*t...who the f*** do you think you are.....at that point, I crumpled up the note and tossed it in a nearby trashcan. I got in the car and placed the blue placard on the mirror in the hopes that whoever left the note was nearby. I should have taken it into the library and demanded that they review the outside security cameras to determine who did it. Dorothy _____ From: [mailto: ] On Behalf Of ksanders58 Sent: Sunday, August 10, 2008 8:48 PM Subject: [ ] Re: Afraid of my drug-switch Clora and Group, I get the same nods when I park in the handicap spot and some family members think I am so much better because of the weight gain.They think extra weight means health.My husband is my rock.He knows the DAILY crap I endure.Thanks for your input.Hope everyone is having a good evening. > Quote Link to comment Share on other sites More sharing options...
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