Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi Heidi, the mtx made me really sick as well so my rh put me on a prescription strength of folic acid. i am on 3mg of folic acid the other days of the week i dont take mtx and it cuts down on the sickness. you might want to ask about that - it seemed to help me. thanks - shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Thanks . I am on 1 mg every day so maybe he can increase it. Heidi M On Wed, Jul 23, 2008 at 10:14 AM, shannonvc <shannonvc@...> wrote: > Hi Heidi, > > the mtx made me really sick as well so my rh put me on a prescription > strength of folic acid. i am on 3mg of folic acid the other days of > the week i dont take mtx and it cuts down on the sickness. you might > want to ask about that - it seemed to help me. > > thanks - shannon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 hey heidi, yeah i started on 1mg but the dr increased it to 3mg and it was like night and day. i dont get sick anymore. it really made me feel better. thanks shannon > > > Hi Heidi, > > > > the mtx made me really sick as well so my rh put me on a prescription > > strength of folic acid. i am on 3mg of folic acid the other days of > > the week i dont take mtx and it cuts down on the sickness. you might > > want to ask about that - it seemed to help me. > > > > thanks - shannon > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I just started on Methotrexate 5 weeks ago trying to find something that will work so that I can get off of the Predisone and Plaquenil that I have been on for the last 8 years. The Dr. had me start off at 2 pills once per week and then wanted me to slowly increase to 4. I get sick, dizzy, tired, etc. every time I take it. When I increased to 3 pills I broke out in a rash all over my face, arms, legs, stomach, etc. The Dr. had me go back down to 2 pills and I have an appt. to see her next week. I, also, take Folic Acid to help with these symptoms but it doesn't completely get rid of them. I think Enbrel is next on the list of things to try... Jackie hey heidi, yeah i started on 1mg but the dr increased it to 3mg and it was like night and day. i dont get sick anymore. it really made me feel better. thanks shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I too quit taking MTX. It did not make me sick but even on small dosage (10mg/wk) I was so tired for about 3 of the days each week that I could not function and that definitey was not me. I have always been very active and I felt like I was withdrawing from life. But when I quit I could really tell a big difference in the join pain. I did low dose steriods for a little while and about 6 weeks ago we started Arava. I am beginning to tell a positive difference. I hated adding another med (I take Enbrel also) but I have been able to stop the steriods for about 2 weeks now without any noticable difference in join pain. From: Heidi Mendelsohn <hmendelsohn@...> Subject: [ ] I'm done with MTX " " < > Date: Wednesday, July 23, 2008, 9:04 AM Hi Y'all, Well I have taken MTX for about a year and I know it has helped some but I am so tired of the side effects, 4 days after I take it, like clockwork, I get sick, weak, and have diarrhea for 2 days. I am 51 years old going on 90 those days. Next time I go to RHU I am telling him NO MORE!! I would rather have my hand turn than have this sickness. I feel like I am being slowly poisoned. I am going to keep the Humera for a while as it does not bother me. The MTX my have helped the knees but has not helped the wrist/hand pain. So why go on taking it? Question: Is there an alternative to MTX that will not make me so sick? Help y'all I need to have some alternative to talk to the Dr about. I take Neurontin and Vicodan for the Fibro and many other meds for various diseases. Any advice will be more than welcomed Thanks for listening ( or reading ) Heidi M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I stopped MTX as well. I had three days of fatigue, headaches and nausea. I also took folic acid but it didn't help. My doctor put me on sulfasalizine as a replacement and I don't really notice any side effects with it. On 7/23/08, Boyd <lindagb52@...> wrote: > > I too quit taking MTX. It did not make me sick but even on small dosage > (10mg/wk) I was so tired for about 3 of the days each week that I could not > function and that definitey was not me. I have always been very active and > I felt like I was withdrawing from life. But when I quit I could really > tell a big difference in the join pain. I did low dose steriods for a > little while and about 6 weeks ago we started Arava. I am beginning to > tell a positive difference. I hated adding another med (I take Enbrel also) > but I have been able to stop the steriods for about 2 weeks now without any > noticable difference in join pain. > > > > From: Heidi Mendelsohn <hmendelsohn@... <hmendelsohn%40gmail.com>> > Subject: [ ] I'm done with MTX > " " < < %40> > > > Date: Wednesday, July 23, 2008, 9:04 AM > > Hi Y'all, > Well I have taken MTX for about a year and I know it has helped some but I > am so tired of the side effects, 4 days after I take it, like clockwork, I > get sick, weak, and have diarrhea for 2 days. I am 51 years old going on 90 > those days. Next time I go to RHU I am telling him NO MORE!! I would rather > have my hand turn than have this sickness. I feel like I am being slowly > poisoned. > I am going to keep the Humera for a while as it does not bother me. The MTX > my have helped the knees but has not helped the wrist/hand pain. So why go > on taking it? Question: Is there an alternative to MTX that will not make > me > so sick? Help y'all I need to have some alternative to talk to the Dr > about. > I take Neurontin and Vicodan for the Fibro and many other meds for various > diseases. Any advice will be more than welcomed > Thanks for listening ( or reading ) > Heidi M > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 I am a former lurker and thought I'd start keeping up with the posts. I was diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional times on prednisone. I always feel the best when i'm on prednisone. I'm now having a bunch of lung problems. Out of breath at the simplest tasks, esp. steps. I quit taking the MTX while undergoing some lung tests. No pulm. Hypertension. I see the pulmonologist next month and also my Rheumy. They are both new doctors (insurance change) and I like them both. I'm hoping to go on Arava. Any thoughts on the lung issues? I also have neuropathy (no diabetes). Not sure what else I should have the dr's look for. I'd also like to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't keep up with them anymore. Have a good day all, Tammy in Wisconsin _________________________________________________________________ Use video conversation to talk face-to-face with Windows Live Messenger. http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\ resh_messenger_video_072008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 I am gonna talk to the Rhu about the other choices. As I said I am just tired of being tired. Hope everyone is starting out for a good day Heidi M On Wed, Jul 23, 2008 at 11:00 PM, Tammy Fredricks < tammyfredricks@...> wrote: > > I am a former lurker and thought I'd start keeping up with the posts. I was > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional > times on prednisone. I always feel the best when i'm on prednisone. I'm now > having a bunch of lung problems. Out of breath at the simplest tasks, esp. > steps. I quit taking the MTX while undergoing some lung tests. No pulm. > Hypertension. I see the pulmonologist next month and also my Rheumy. They > are both new doctors (insurance change) and I like them both. I'm hoping to > go on Arava. Any thoughts on the lung issues? I also have neuropathy (no > diabetes). Not sure what else I should have the dr's look for. I'd also like > to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, > & 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > __________________________________________________________ > Use video conversation to talk face-to-face with Windows Live Messenger. > > http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\ resh_messenger_video_072008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Tammy, Glad to hear you are getting your lungs checked. I have heard and read about RA in the lungs but I don't have any real knowledge. I am sure you can find much about it on the web. may have a link or article for you. Shirley > > > I am a former lurker and thought I'd start keeping up with the posts. I was diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional times on prednisone. I always feel the best when i'm on prednisone. I'm now having a bunch of lung problems. Out of breath at the simplest tasks, esp. steps. I quit taking the MTX while undergoing some lung tests. No pulm. Hypertension. I see the pulmonologist next month and also my Rheumy. They are both new doctors (insurance change) and I like them both. I'm hoping to go on Arava. Any thoughts on the lung issues? I also have neuropathy (no diabetes). Not sure what else I should have the dr's look for. I'd also like to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > _________________________________________________________________ > Use video conversation to talk face-to-face with Windows Live Messenger. > http://www.windowslive.com/messenger/connect_your_way.html? ocid=TXT_TAGLM_WL_Refresh_messenger_video_072008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Tammy, Just read your post and needed to reply. I am 47years and also have three children, so I sympathise with you. I have also had RA for four years, but before that suffered from FM. It must be very hard for you as my children are older, 25years, 23years and 15years. The older girls have their own place, but I do feel sorry for my youngest as she has very rarely seen her mother healthy. I feel she has missed out on so much. I had my children quite young (first at 22years)wanting to be a young mum, up for any challenges!!! Not ever thinking that my health would be so poorly. It is a struggle everyday now to just get the basic things done and you would know all about that. So I hope things improve with your health and all the others on this support line. I also noticed improvement when my predisolone was put up. But I know it is nood good to be on it for a long time on a high dose. I am now down to 5mg, but am really struggling to function !!! Take care . > > > I am a former lurker and thought I'd start keeping up with the posts. I was diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional times on prednisone. I always feel the best when i'm on prednisone. I'm now having a bunch of lung problems. Out of breath at the simplest tasks, esp. steps. I quit taking the MTX while undergoing some lung tests. No pulm. Hypertension. I see the pulmonologist next month and also my Rheumy. They are both new doctors (insurance change) and I like them both. I'm hoping to go on Arava. Any thoughts on the lung issues? I also have neuropathy (no diabetes). Not sure what else I should have the dr's look for. I'd also like to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > _________________________________________________________________ > Use video conversation to talk face-to-face with Windows Live Messenger. > http://www.windowslive.com/messenger/connect_your_way.html? ocid=TXT_TAGLM_WL_Refresh_messenger_video_072008 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 In a message dated 7/24/2008 4:46:39 P.M. Central Daylight Time, marysue@... writes: Arava worked very well for me to control the pain and inflammation. Unfortunately, methotrexate had already caused my white blood cell count to get too low, and the Arava just continued it. It would be interesting to know what would have happened if I'd been put on the Arava first. Good luck! I've been on one pill a day of Arava for a couple of weeks. This is in addition to 4 Mtx a week. I can't tell if there is much difference. I still feel tired, weak and sometimes nauseated. Can never tell if it's from the RA or the medication. dd **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi im Jolene 43 year old mother of five kids two still at home. I have ra/psoriatic arthritis, and rsd as well. I take five mtx a week for for now. I do notice some weeks im couching a lot but i smoke which is really bad. I also know what its like to raise kids with illness but we are surviving you can email me anytime. It is a hard thing to deal with, but we have tried to do what we can to make the kids more independent and i agree they have a much better view of people with disabilities for sure. Jolene In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight Time, melyndagamez@... writes: hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy. what more could i possibly ask for?lol! i too take mtx, plaquenile, prednisone,etc.i too t i just started having breathing problems around a year ago but i did not know what it was,i was scared!!!! the dr. said i had bad anxiety, i believed other wise... i mean i was put in the hospital for a week, did breathing tests etc... at home i would stop breathing, it scared the hell out of me, my hub and 10yr.old daughter,alyssa. now i know i have problems cuz my rheummy did testing come to find out my esophagus is closing!! well i just deal!!! i know what u mean when u say about keeping up with your children. it's hard, my alyssa has had to deal with alot but one thing i can say & it's the god's honest truth is she has bcome a very loving,kind,a very loving,a very loving,kind, she knows that we're all different in some way or another,no one is PERFECT!!!! god bless,melyndagamez 7/24/08 6p.m.central ----- Original Message ---- From: Tammy Fredricks <_tammyfredricks@tammyfredri_ (mailto:tammyfredricks@...) > _@grora-supp_ (mailto: ) Sent: Wednesday, July 23, 2008 10:00:12 PM Subject: RE: [ ] I'm done with MTX I am a former lurker and thought I'd start keeping up with the posts. I was diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional times on prednisone. I always feel the best when i'm on prednisone. I'm now having a bunch of lung problems. Out of breath at the simplest tasks, esp. steps. I quit taking the MTX while undergoing some lung tests. No pulm. Hypertension. I see the pulmonologist next month and also my Rheumy. They are both new doctors (insurance change) and I like them both. I'm hoping to go on Arava. Any thoughts on the lung issues? I also have neuropathy (no diabetes). Not sure what else I should have the dr's look for. I'd also like to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't keep up with them anymore. Have a good day all, Tammy in Wisconsin __________________________________________________________ Use video conversation to talk face-to-face with Windows Live Messenger. _http://www.windowslhttp://www.windohttp://wwwhttp://wwhttp://wwwhttp://wwwhtt p://www.http://wwwhttp://www.w_ (http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Re\ fresh_messenger_video_072008) [Non-text portions of this message have been removed] ------------------------------------ This is a private list. Should you wish to forward any mail to nonsubscribers, you must first obtain the writer's permission. We are NOT physicians. Information on this list is not to be construed as medical advice, and we cannot guarantee the accuracy and currency of the information provided. For archives or to change subscription options: _http://health.http://healthhttp://heahttp://health._ ( ) ! Groups Links [Non-text portions of this message have been removed] **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 I could not take MTX either. I started with pills. started with 3 pills and got to 4 pills. Then switched to injections due to side effects. My rheummy was a real ass. He was treating lab results and never really listened to me. I got very sick..diarrhea, nausea, vomiting, dizziness, sores in my mouth, nose, eyes, and all mucous membranes including genitalia. The real kicked was the drug induced pneumonitis I got that my doc said I was so close to getting put in the hospital. Thank God I had no permenant lung damage. The sad part was that my rheummy ignored my complaints. When I go sick I could not eat, sleep or lay down. I went to my primary who immediately knew what was wrong. He went around the corner got the rheummy and it was ugly. Rheummy did not even apologize. I was up to 5 mg folic acid a day and leukovorin on my MTX dose day. Nothing helped with side effects. I know many swear by this drug and it works wonders for them. But for some of use..MTX is toxic! Toni ______________________________________________________________________ **************Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Arava worked very well for me to control the pain and inflammation. Unfortunately, methotrexate had already caused my white blood cell count to get too low, and the Arava just continued it. It would be interesting to know what would have happened if I'd been put on the Arava first. Good luck! Sue On Wednesday, July 23, 2008, at 11:00 PM, Tammy Fredricks wrote: > I'd also like to know what people think of Arava. By the way, I'm 46 > with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't > keep up with them anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy. what more could i possibly ask for?lol! i too take mtx, plaquenile, prednisone,etc........ i just started having breathing problems around a year ago but i did not know what it was,i was scared!!!! the dr. said i had bad anxiety, i believed other wise... i mean i was put in the hospital for a week, did breathing tests etc... at home i would stop breathing, it scared the hell out of me, my hub and 10yr.old daughter,alyssa. now i know i have problems cuz my rheummy did testing come to find out my esophagus is closing!! well i just deal!!! i know what u mean when u say about keeping up with your children. it's hard, my alyssa has had to deal with alot but one thing i can say & it's the god's honest truth is she has bcome a very loving,kind,compassionate,caring lil girl. she knows that we're all different in some way or another,no one is PERFECT!!!! god bless,melyndagamez 7/24/08 6p.m.central RE: [ ] I'm done with MTX I am a former lurker and thought I'd start keeping up with the posts. I was diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional times on prednisone. I always feel the best when i'm on prednisone. I'm now having a bunch of lung problems. Out of breath at the simplest tasks, esp. steps. I quit taking the MTX while undergoing some lung tests. No pulm. Hypertension. I see the pulmonologist next month and also my Rheumy. They are both new doctors (insurance change) and I like them both. I'm hoping to go on Arava. Any thoughts on the lung issues? I also have neuropathy (no diabetes). Not sure what else I should have the dr's look for. I'd also like to know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & 7). I feel bad for my younger ones. I can't keep up with them anymore. Have a good day all, Tammy in Wisconsin _________________________________________________________________ Use video conversation to talk face-to-face with Windows Live Messenger. http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\ resh_messenger_video_072008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Hi Toni, Hi, Reading your post was very interesting. I am very sure that it was the MTX that sent my liver function tests to go way out!!! It started when they put my dose up and I was having severe stomach cramps and diarrhea. When I went to my local doctor he said to half my dose again and mention it to the Rhematologist when I went back. I did and when he checked my liver function tests they were way out !! He told me to stop it immediately, but my liver was getting more and more pickle. It was explained to me that the MTX attaches itself to the tissues in our body and it takes a long time to do that, so it also takes a long time to get out of our system !!! I was getting so itchy like I had fleas and was told to go off the plaquenil as well. On my records I have now got allergic to MTX and plaquenil !! Now this other Rhematolist wants me to go back on it. I am very sceptical to do so. Now I have heard other stories about it, I have reason to be cautious. Thanks for your imput. . > I could not take MTX either. I started with pills. started with 3 pills and > got to 4 pills. Then switched to injections due to side effects. My rheummy > was a real ass. He was treating lab results and never really listened to me. > I got very sick..diarrhea, nausea, vomiting, dizziness, sores in my mouth, > nose, eyes, and all mucous membranes including genitalia. The real kicked > was the drug induced pneumonitis I got that my doc said I was so close to > getting put in the hospital. Thank God I had no permenant lung damage. The sad > part was that my rheummy ignored my complaints. When I go sick I could not eat, > sleep or lay down. I went to my primary who immediately knew what was > wrong. He went around the corner got the rheummy and it was ugly. Rheummy did > not even apologize. > > I was up to 5 mg folic acid a day and leukovorin on my MTX dose day. Nothing > helped with side effects. > > I know many swear by this drug and it works wonders for them. But for some > of use..MTX is toxic! > > Toni > > > _____________________________________________________________________ _ > > > > > **************Get fantasy football with free live scoring. Sign up for > FanHouse Fantasy Football today. > (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 > Hi Jolene and Tammy and other mums out there, It is so good to be able to read posts from mothers suffering from the same illnesses. It doesn't make me feel so alone. I like you all out there, grieve the life I once had before I was struck down with illness. But I try and be postitive and keep my sense of humour, because without that I think I would get very depressed. Raising children with a disability is a real challenge and I do know that my youngest daughter who has been at home the longest with me and seen the disabiling affects it has on my life,has so much compassion and more understanding than others who don't see what goes on behind closed doors. I was told the other day I looked the picture of health !!! I had ventured out of the house to go to karaoke, that I have not done in ages because of my ill health. I thought to myself,if only you could see my pain. But that is how it is, if people cannot see from the outside they don't understand. Anyway my thoart has been affected by all the medication and my breathing is not too good from the inflamtion around my heart, but I still sang two songs and didn't care if I tortured the crowd. It was my thearapy.!!! Then back home to more pain !!! Life is full of suprises some we don't want but have no choice. So I wish you all and your families all the best and hope your health improves. Keep persevering and god bless you all. . > Hi im Jolene 43 year old mother of five kids two still at home. I have > ra/psoriatic arthritis, and rsd as well. I take five mtx a week for for now. I > do notice some weeks im couching a lot but i smoke which is really bad. I > also know what its like to raise kids with illness but we are surviving you > can email me anytime. It is a hard thing to deal with, but we have tried to > do what we can to make the kids more independent and i agree they have a much > better view of people with disabilities for sure. > > Jolene > > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight Time, > melyndagamez@... writes: > > > > > hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy. > what more could i possibly ask for?lol! > i too take mtx, plaquenile, prednisone,etc.i too t > i just started having breathing problems around a year ago but i did not > know what it was,i was scared!!!! > the dr. said i had bad anxiety, i believed other wise... > i mean i was put in the hospital for a week, did breathing tests etc... > at home i would stop breathing, it scared the hell out of me, my hub and > 10yr.old daughter,alyssa. > now i know i have problems cuz my rheummy did testing come to find out my > esophagus is closing!! > well i just deal!!! > i know what u mean when u say about keeping up with your children. > it's hard, my alyssa has had to deal with alot but one thing i can say & > it's the god's honest truth is she has bcome > a very loving,kind,a very loving,a very loving,kind, > she knows that we're all different in some way or another,no one is > PERFECT!!!! > god bless,melyndagamez 7/24/08 6p.m.central > > ----- Original Message ---- > From: Tammy Fredricks <_tammyfredricks@tammyfredri_ > (mailto:tammyfredricks@...) > > _@grora-supp_ (mailto:ra- support ) > Sent: Wednesday, July 23, 2008 10:00:12 PM > Subject: RE: [ ] I'm done with MTX > > I am a former lurker and thought I'd start keeping up with the posts. I was > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional > times on prednisone. I always feel the best when i'm on prednisone. I'm now > having a bunch of lung problems. Out of breath at the simplest tasks, esp. > steps. I quit taking the MTX while undergoing some lung tests. No pulm. > Hypertension. I see the pulmonologist next month and also my Rheumy. They are > both new doctors (insurance change) and I like them both. I'm hoping to go on > Arava. Any thoughts on the lung issues? I also have neuropathy (no > diabetes). Not sure what else I should have the dr's look for. I'd also like to > know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & > 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > __________________________________________________________ > Use video conversation to talk face-to-face with Windows Live Messenger. > _http://www.windowslhttp://www.windohttp://wwwhttp://wwhttp://wwwhttp ://wwwhtt > p://www.http://wwwhttp://www.w_ > (http://www.windowslive.com/messenger/connect_your_way.html? ocid=TXT_TAGLM_WL_Refresh_messenger_video_072008) > > [Non-text portions of this message have been removed] > > ------------------------------------ > > This is a private list. Should you wish to forward any mail to > nonsubscribers, you must first obtain the writer's permission. > > We are NOT physicians. Information on this list is not to be construed > as medical advice, and we cannot guarantee the accuracy and currency > of the information provided. > > For archives or to change subscription options: > _http://health.http://healthhttp://heahttp://health._ > ( ) ! Groups Links > > [Non-text portions of this message have been removed] > > > > > > > > **************Get fantasy football with free live scoring. Sign up for > FanHouse Fantasy Football today. > (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Melynda, I'm so sorry to hear about the severity of your breathing problems! What will the Dr. do about it? I get extremely winded if I walk up just one flight of steps and I live in a bi-level....always steps in my house. If I would happen to have an anxiety attack it gets much worse. Dr. won't put me on anything for that b/c it's not that bad. <sigh> Take care, Tammy> > From: melyndagamez@...> Date: Thu, 24 Jul 2008 15:57:09 -0700> Subject: Re: [ ] I'm done with MTX> > hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy.> what more could i possibly ask for?lol!> i too take mtx, plaquenile, prednisone,etc........> i just started having breathing problems around a year ago but i did not know what it was,i was scared!!!!> the dr. said i had bad anxiety, i believed other wise...> i mean i was put in the hospital for a week, did breathing tests etc...> at home i would stop breathing, it scared the hell out of me, my hub and 10yr.old daughter,alyssa.> now i know i have problems cuz my rheummy did testing come to find out my esophagus is closing!!> well i just deal!!!> i know what u mean when u say about keeping up with your children.> it's hard, my alyssa has had to deal with alot but one thing i can say & it's the god's honest truth is she has bcome> a very loving,kind,compassionate,caring lil girl.> she knows that we're all different in some way or another,no one is PERFECT!!!!> god bless,melyndagamez _________________________________________________________________ Use video conversation to talk face-to-face with Windows Live Messenger. http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\ resh_messenger_video_072008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 and the Group I am still taking MTX. I have seen no difference but the doctor has me on it. , I read your beautiful email. It is so sweet. Yes people don't know your pain. I hunderstand completely. My oldest daughter cant understand mine. Lot of my friends and family are supportive for me.. I dont have visual signs of bad health except for my weight. I am very over weight. And many people thinks if I lose weight I will be pain free. I have to lose weight don't get me wrong. Is there thin people with RA here that still has pain. I would like a few of my family members to read about their pain. Sometimes the pain is so bad I cry privately in my room. Please don't worry I have a good RA doctor and she is working on helping the pain I am in. I was touched by s email she has small children to care for and has RA. I can't imagine how hard that is. My children is all grown up. But keeps a positive outlook on her condition. When I read your email I thought the same way also. We have to press on. There is better days and sometimes very bad days. God bless the group Clora From: michellefollet <michellefollet@...> Subject: [ ] Re: I'm done with MTX Date: Friday, July 25, 2008, 2:01 AM > Hi Jolene and Tammy and other mums out there, It is so good to be able to read posts from mothers suffering from the same illnesses. It doesn't make me feel so alone. I like you all out there, grieve the life I once had before I was struck down with illness. But I try and be postitive and keep my sense of humour, because without that I think I would get very depressed. Raising children with a disability is a real challenge and I do know that my youngest daughter who has been at home the longest with me and seen the disabiling affects it has on my life,has so much compassion and more understanding than others who don't see what goes on behind closed doors. I was told the other day I looked the picture of health !!! I had ventured out of the house to go to karaoke, that I have not done in ages because of my ill health. I thought to myself,if only you could see my pain. But that is how it is, if people cannot see from the outside they don't understand. Anyway my thoart has been affected by all the medication and my breathing is not too good from the inflamtion around my heart, but I still sang two songs and didn't care if I tortured the crowd. It was my thearapy.!!! Then back home to more pain !!! Life is full of suprises some we don't want but have no choice. So I wish you all and your families all the best and hope your health improves. Keep persevering and god bless you all. . > Hi im Jolene 43 year old mother of five kids two still at home. I have > ra/psoriatic arthritis, and rsd as well. I take five mtx a week for for now. I > do notice some weeks im couching a lot but i smoke which is really bad. I > also know what its like to raise kids with illness but we are surviving you > can email me anytime. It is a hard thing to deal with, but we have tried to > do what we can to make the kids more independent and i agree they have a much > better view of people with disabilities for sure. > > Jolene > > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight Time, > melyndagamez@ ... writes: > > > > > hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy. > what more could i possibly ask for?lol! > i too take mtx, plaquenile, prednisone,etc. i too t > i just started having breathing problems around a year ago but i did not > know what it was,i was scared!!!! > the dr. said i had bad anxiety, i believed other wise... > i mean i was put in the hospital for a week, did breathing tests etc... > at home i would stop breathing, it scared the hell out of me, my hub and > 10yr.old daughter,alyssa. > now i know i have problems cuz my rheummy did testing come to find out my > esophagus is closing!! > well i just deal!!! > i know what u mean when u say about keeping up with your children. > it's hard, my alyssa has had to deal with alot but one thing i can say & > it's the god's honest truth is she has bcome > a very loving,kind, a very loving,a very loving,kind, > she knows that we're all different in some way or another,no one is > PERFECT!!!! > god bless,melyndagamez 7/24/08 6p.m.central > > RE: [ ] I'm done with MTX > > I am a former lurker and thought I'd start keeping up with the posts. I was > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional > times on prednisone. I always feel the best when i'm on prednisone. I'm now > having a bunch of lung problems. Out of breath at the simplest tasks, esp. > steps. I quit taking the MTX while undergoing some lung tests. No pulm. > Hypertension. I see the pulmonologist next month and also my Rheumy. They are > both new doctors (insurance change) and I like them both. I'm hoping to go on > Arava. Any thoughts on the lung issues? I also have neuropathy (no > diabetes). Not sure what else I should have the dr's look for. I'd also like to > know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & > 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > ____________ _________ _________ _________ _________ _________ _ > Use video conversation to talk face-to-face with Windows Live Messenger. > _http://www.windowsl http://www. windohttp: //wwwhttp: //wwhttp: //wwwhttp ://wwwhtt > p://www.http: //wwwhttp: //www.w_ > (http://www.windowsl ive.com/messenge r/connect_ your_way. html? ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 Clora, while I am not skinny, I am only about ten lbs overweight and that is due to the Pred. Before taking it I was fine and trust me, I have a LOT of pain!! a RE: [ ] I'm done with MTX > > I am a former lurker and thought I'd start keeping up with the posts. I was > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with occasional > times on prednisone. I always feel the best when i'm on prednisone. I'm now > having a bunch of lung problems. Out of breath at the simplest tasks, esp. > steps. I quit taking the MTX while undergoing some lung tests. No pulm. > Hypertension. I see the pulmonologist next month and also my Rheumy. They are > both new doctors (insurance change) and I like them both. I'm hoping to go on > Arava. Any thoughts on the lung issues? I also have neuropathy (no > diabetes). Not sure what else I should have the dr's look for. I'd also like to > know what people think of Arava. By the way, I'm 46 with 3 kids (19, 10, & > 7). I feel bad for my younger ones. I can't keep up with them anymore. > > Have a good day all, > Tammy in Wisconsin > ____________ _________ _________ _________ _________ _________ _ > Use video conversation to talk face-to-face with Windows Live Messenger. > _http://www.windowsl http://www. windohttp: //wwwhttp: //wwhttp: //wwwhttp ://wwwhtt > p://www.http: //wwwhttp: //www.w_ > (http://www.windowsl ive.com/messenge r/connect_ your_way. html? ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 I just wanted to jump in and say that I need to lose weight and I know it would probably help at least a little but how the heck am I suppose to exercise when I can't hardly walk on days. I guess I am just going to have to get hobbling down the road. LOL Easy for people to say for us to lose weight when they can move freely. THat always ticks me off. > > > > Hi Jolene and Tammy and other mums out there, > > It is so good to be able to read posts from mothers suffering from > the same illnesses. It doesn't make me feel so alone. I like you > all out there, grieve the life I once had before I was struck down > with illness. > > But I try and be postitive and keep my sense of humour, because > without that I think I would get very depressed. > > Raising children with a disability is a real challenge and I do know > that my youngest daughter who has been at home the longest with me > and seen the disabiling affects it has on my life,has so much > compassion and more understanding than others who don't see what > goes on behind closed doors. > > I was told the other day I looked the picture of health !!! I had > ventured out of the house to go to karaoke, that I have not done in > ages because of my ill health. I thought to myself,if only you > could see my pain. But that is how it is, if people cannot see from > the outside they don't understand. > > Anyway my thoart has been affected by all the medication and my > breathing is not too good from the inflamtion around my heart, but I > still sang two songs and didn't care if I tortured the crowd. It > was my thearapy.!!! > > Then back home to more pain !!! Life is full of suprises some we > don't want but have no choice. So I wish you all and your families > all the best and hope your health improves. Keep persevering and > god bless you all. > > . > > > Hi im Jolene 43 year old mother of five kids two still at home. > I have > > ra/psoriatic arthritis, and rsd as well. I take five mtx a week > for for now. I > > do notice some weeks im couching a lot but i smoke which is > really bad. I > > also know what its like to raise kids with illness but we are > surviving you > > can email me anytime. It is a hard thing to deal with, but we > have tried to > > do what we can to make the kids more independent and i agree they > have a much > > better view of people with disabilities for sure. > > > > Jolene > > > > > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight Time, > > melyndagamez@ ... writes: > > > > > > > > > > hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy. > > what more could i possibly ask for?lol! > > i too take mtx, plaquenile, prednisone,etc. i too t > > i just started having breathing problems around a year ago but i > did not > > know what it was,i was scared!!!! > > the dr. said i had bad anxiety, i believed other wise... > > i mean i was put in the hospital for a week, did breathing tests > etc... > > at home i would stop breathing, it scared the hell out of me, my > hub and > > 10yr.old daughter,alyssa. > > now i know i have problems cuz my rheummy did testing come to > find out my > > esophagus is closing!! > > well i just deal!!! > > i know what u mean when u say about keeping up with your children. > > it's hard, my alyssa has had to deal with alot but one thing i > can say & > > it's the god's honest truth is she has bcome > > a very loving,kind, a very loving,a very loving,kind, > > she knows that we're all different in some way or another,no one > is > > PERFECT!!!! > > god bless,melyndagamez 7/24/08 6p.m.central > > > > RE: [ ] I'm done with MTX > > > > I am a former lurker and thought I'd start keeping up with the > posts. I was > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with > occasional > > times on prednisone. I always feel the best when i'm on > prednisone. I'm now > > having a bunch of lung problems. Out of breath at the simplest > tasks, esp. > > steps. I quit taking the MTX while undergoing some lung tests. > No pulm. > > Hypertension. I see the pulmonologist next month and also my > Rheumy. They are > > both new doctors (insurance change) and I like them both. I'm > hoping to go on > > Arava. Any thoughts on the lung issues? I also have neuropathy > (no > > diabetes). Not sure what else I should have the dr's look for. > I'd also like to > > know what people think of Arava. By the way, I'm 46 with 3 kids > (19, 10, & > > 7). I feel bad for my younger ones. I can't keep up with them > anymore. > > > > Have a good day all, > > Tammy in Wisconsin > > ____________ _________ _________ _________ _________ _________ _ > > Use video conversation to talk face-to-face with Windows Live > Messenger. > > > _http://www.windowsl http://www. windohttp: //wwwhttp: //wwhttp: //wwwhttp > ://wwwhtt > > p://www.http: //wwwhttp: //www.w_ > > (http://www.windowsl ive.com/messenge r/connect_ your_way. html? > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 and group. Awe thank you your right. How can we lose weight when we are in to much pain to move. I am eating fresh vegetables. I avoid fried foods. Had to give up sugar cause I have diabetes now. I do eat the fake sugars sometimes. I cut my meat portions down. I limp through the house now just to go to the bathroom. I got some suggestions in my book mark to lose weight plus I have a few books for weight loss from doctors. My daughter wont get me a drink cause she says you need to walk mother . I told her that I was in to much pain. Please don't hate her. but she said get up mother you need to move. She is 36 years old. She don't realize how much pain I am in , or she is in denial. She is a loving daughter. She thinks if she makes me walk I will lose weight. Don't worry my husband does it for me when I cant. I will show my daughter the letter about skinny people with RA. So again I say is there skinny people out there with RA who hurts real bad?? My daughter thinks if I lose weight the pain will all go away. j Oh my daughter said about the other girl having a lot of pain is not the same as me. Well I just got to let it go. I am in pain and so is anyone else that has RA. Some people have had remissions and better days. I am so glad for them. I hope I get some too. lots of love group. hugs everyone Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 best thing I can tell you is to take small steps and excercise when you can. start out with 1 day a week on a good day and increase it. The more you move the better you will actually feel. That is what I found out. I have to keep myself moving or else the RA will take over me. single mom of 2 under 5 and living with RA since May 2006 RE: [ ] I'm done with MTX > > > > I am a former lurker and thought I'd start keeping up with the > posts. I was > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with > occasional > > times on prednisone. I always feel the best when i'm on > prednisone. I'm now > > having a bunch of lung problems. Out of breath at the simplest > tasks, esp. > > steps. I quit taking the MTX while undergoing some lung tests. > No pulm. > > Hypertension. I see the pulmonologist next month and also my > Rheumy. They are > > both new doctors (insurance change) and I like them both. I'm > hoping to go on > > Arava. Any thoughts on the lung issues? I also have neuropathy > (no > > diabetes). Not sure what else I should have the dr's look for. > I'd also like to > > know what people think of Arava. By the way, I'm 46 with 3 kids > (19, 10, & > > 7). I feel bad for my younger ones. I can't keep up with them > anymore. > > > > Have a good day all, > > Tammy in Wisconsin > > ____________ _________ _________ _________ _________ _________ _ > > Use video conversation to talk face-to-face with Windows Live > Messenger. > > > _http://www.windowsl http://www. windohttp: //wwwhttp: //wwhttp: //wwwhttp > ://wwwhtt > > p://www.http: //wwwhttp: //www.w_ > > (http://www.windowsl ive.com/messenge r/connect_ your_way. html? > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 I very rarely sit still as I have 5 kids still at home and 2 under 5 as well. I am always moving because if I sit still I get stiff. My problem is that I just don't seem to lose any weight. I guess I just don't get enough exercise for weight loss benefits. Maybe I will start starving myself just to see if it works. LOL My body has always been very stubborn to losing weight. Before the autoimmue I would have to do extensive aerobics to lose anything. Oh well, gotta love it. > > > > > > > Hi Jolene and Tammy and other mums out there, > > > > It is so good to be able to read posts from mothers suffering > from > > the same illnesses. It doesn't make me feel so alone. I like you > > all out there, grieve the life I once had before I was struck > down > > with illness. > > > > But I try and be postitive and keep my sense of humour, because > > without that I think I would get very depressed. > > > > Raising children with a disability is a real challenge and I do > know > > that my youngest daughter who has been at home the longest with > me > > and seen the disabiling affects it has on my life,has so much > > compassion and more understanding than others who don't see what > > goes on behind closed doors. > > > > I was told the other day I looked the picture of health !!! I had > > ventured out of the house to go to karaoke, that I have not done > in > > ages because of my ill health. I thought to myself,if only you > > could see my pain. But that is how it is, if people cannot see > from > > the outside they don't understand. > > > > Anyway my thoart has been affected by all the medication and my > > breathing is not too good from the inflamtion around my heart, > but I > > still sang two songs and didn't care if I tortured the crowd. It > > was my thearapy.!!! > > > > Then back home to more pain !!! Life is full of suprises some we > > don't want but have no choice. So I wish you all and your > families > > all the best and hope your health improves. Keep persevering and > > god bless you all. > > > > . > > > > > Hi im Jolene 43 year old mother of five kids two still at home. > > I have > > > ra/psoriatic arthritis, and rsd as well. I take five mtx a week > > for for now. I > > > do notice some weeks im couching a lot but i smoke which is > > really bad. I > > > also know what its like to raise kids with illness but we are > > surviving you > > > can email me anytime. It is a hard thing to deal with, but we > > have tried to > > > do what we can to make the kids more independent and i agree > they > > have a much > > > better view of people with disabilities for sure. > > > > > > Jolene > > > > > > > > > In a message dated 7/24/2008 6:57:57 P.M. Eastern Daylight > Time, > > > melyndagamez@ ... writes: > > > > > > > > > > > > > > > hi tammy, i'm a38yr.old mother with severe ra,osteo, & > neuropathy. > > > what more could i possibly ask for?lol! > > > i too take mtx, plaquenile, prednisone,etc. i too t > > > i just started having breathing problems around a year ago but > i > > did not > > > know what it was,i was scared!!!! > > > the dr. said i had bad anxiety, i believed other wise... > > > i mean i was put in the hospital for a week, did breathing > tests > > etc... > > > at home i would stop breathing, it scared the hell out of me, > my > > hub and > > > 10yr.old daughter,alyssa. > > > now i know i have problems cuz my rheummy did testing come to > > find out my > > > esophagus is closing!! > > > well i just deal!!! > > > i know what u mean when u say about keeping up with your > children. > > > it's hard, my alyssa has had to deal with alot but one thing i > > can say & > > > it's the god's honest truth is she has bcome > > > a very loving,kind, a very loving,a very loving,kind, > > > she knows that we're all different in some way or another,no > one > > is > > > PERFECT!!!! > > > god bless,melyndagamez 7/24/08 6p.m.central > > > > > > RE: [ ] I'm done with MTX > > > > > > I am a former lurker and thought I'd start keeping up with the > > posts. I was > > > diagnosed with RA four yrs. ago. I've been on Plaq. & Mtx with > > occasional > > > times on prednisone. I always feel the best when i'm on > > prednisone. I'm now > > > having a bunch of lung problems. Out of breath at the simplest > > tasks, esp. > > > steps. I quit taking the MTX while undergoing some lung tests. > > No pulm. > > > Hypertension. I see the pulmonologist next month and also my > > Rheumy. They are > > > both new doctors (insurance change) and I like them both. I'm > > hoping to go on > > > Arava. Any thoughts on the lung issues? I also have neuropathy > > (no > > > diabetes). Not sure what else I should have the dr's look for. > > I'd also like to > > > know what people think of Arava. By the way, I'm 46 with 3 kids > > (19, 10, & > > > 7). I feel bad for my younger ones. I can't keep up with them > > anymore. > > > > > > Have a good day all, > > > Tammy in Wisconsin > > > ____________ _________ _________ _________ _________ _________ _ > > > Use video conversation to talk face-to-face with Windows Live > > Messenger. > > > > > _http://www.windowsl http://www. > windohttp: //wwwhttp: //wwhttp: //wwwhttp > > ://wwwhtt > > > p://www.http: //wwwhttp: //www.w_ > > > (http://www.windowsl ive.com/messenge r/connect_ your_way. html? > > ocid=TXT_TAGLM_ WL_Refresh_ messenger_ video_072008) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2008 Report Share Posted July 25, 2008 HI TAMMY,THAT'S A GOOD QUESTION, WHAT WILL THE DOC DO? WELL AS FOR RIGHT NOW I DON'T KNOW! I WILL HAVE TO WAIT & SEE.THANK-YOU & GOD BLESS,MELYNDA 7/25/08 9:57P.M.CENTRAL Re: [ ] I'm done with MTX> > hi tammy, i'm a38yr.old mother with severe ra,osteo, & neuropathy.> what more could i possibly ask for?lol!> i too take mtx, plaquenile, prednisone,etc........> i just started having breathing problems around a year ago but i did not know what it was,i was scared!!!!> the dr. said i had bad anxiety, i believed other wise...> i mean i was put in the hospital for a week, did breathing tests etc...> at home i would stop breathing, it scared the hell out of me, my hub and 10yr.old daughter,alyssa.> now i know i have problems cuz my rheummy did testing come to find out my esophagus is closing!!> well i just deal!!!> i know what u mean when u say about keeping up with your children.> it's hard, my alyssa has had to deal with alot but one thing i can say & it's the god's honest truth is she has bcome> a very loving,kind,compassionate,caring lil girl.> she knows that we're all different in some way or another,no one is PERFECT!!!!> god bless,melyndagamez _________________________________________________________________ Use video conversation to talk face-to-face with Windows Live Messenger. http://www.windowslive.com/messenger/connect_your_way.html?ocid=TXT_TAGLM_WL_Ref\ resh_messenger_video_072008 Quote Link to comment Share on other sites More sharing options...
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