Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Sharon so sorry to hear that your meds aren't working for you. Hope the new one does.... You will be in my thoughts and prayers... Did you have fun shopping with your sisters..??? Aren't sisters GREAT!! Well , Mine is anyway... Just live to far from her and I miss her... You take care and get some rest... Yeah right.... How's the baby doing..?? Hope everyone is fine. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Sharon so sorry to hear that your meds aren't working for you. Hope the new one does.... You will be in my thoughts and prayers... Did you have fun shopping with your sisters..??? Aren't sisters GREAT!! Well , Mine is anyway... Just live to far from her and I miss her... You take care and get some rest... Yeah right.... How's the baby doing..?? Hope everyone is fine. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Sharon, Hope you get good results from the Enbrel. I was on it for awhile so if you have any questions let me know. Hugs, Sandy Just got home from seeing my rheumy, letting the lab ghouls have at me, then going out to lunch and some light shopping with my sisters.I got my blood drawn for my regular six week CBC, hepatic function this time, and the kit that Dr. Buckner sent. That was LOTS of blood for one draw.My rhuematologist, Dr. Wonderful, gave me the paperwork to enroll for Enbrel. He feels that we have gone as far as we can with Azathioprine since my body will not let me take more than the 150 mg a day that I am currently using, and he said my disease is still "too active". He also wants me off Prednisone, or at least on a single digit dose and that is not happening. I'm having lots of bruising and my BP was up again today. So, he gave me a prescription that I am to use at our mail-in plan. That way it will give the enrollment a chance to get established. Wish me luck! He said that it is very fast acting and I could notice results by the day after my first injection. This is being added on to everything else I take. When I notice improvement, I will start dialing back on the prednisone first thing. He is then hoping to get me off of Arava and Azathioprine. I would be more than happy to trade three drugs for just one.I hope that everyone who is going on the Tulsa invasion has a wonderful time. That is so funny to think of all the people on steroids being together in one room! Have a blast!Love, SharonDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Sharon, Hope you get good results from the Enbrel. I was on it for awhile so if you have any questions let me know. Hugs, Sandy Just got home from seeing my rheumy, letting the lab ghouls have at me, then going out to lunch and some light shopping with my sisters.I got my blood drawn for my regular six week CBC, hepatic function this time, and the kit that Dr. Buckner sent. That was LOTS of blood for one draw.My rhuematologist, Dr. Wonderful, gave me the paperwork to enroll for Enbrel. He feels that we have gone as far as we can with Azathioprine since my body will not let me take more than the 150 mg a day that I am currently using, and he said my disease is still "too active". He also wants me off Prednisone, or at least on a single digit dose and that is not happening. I'm having lots of bruising and my BP was up again today. So, he gave me a prescription that I am to use at our mail-in plan. That way it will give the enrollment a chance to get established. Wish me luck! He said that it is very fast acting and I could notice results by the day after my first injection. This is being added on to everything else I take. When I notice improvement, I will start dialing back on the prednisone first thing. He is then hoping to get me off of Arava and Azathioprine. I would be more than happy to trade three drugs for just one.I hope that everyone who is going on the Tulsa invasion has a wonderful time. That is so funny to think of all the people on steroids being together in one room! Have a blast!Love, SharonDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 --- Sandy Catalusci wrote: > Sharon, > Hope you get good results from the Enbrel. I was on > it for awhile so if you have any questions let me > know. > > Hugs, > Sandy Hi Sandy, I know you don't have time right now with your trip coming up, but if you would share with me about your experience on Enbrel I would love to hear it. I know you are on the Cytoxin now, so did Enbrel not work for you, or did you have a reaction? Concentrate on your trip for now, but please spill the beans for me when you get home. BTW, have a wonderful time! Love, Sharon > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE > ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE > FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. > REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 --- Sandy Catalusci wrote: > Sharon, > Hope you get good results from the Enbrel. I was on > it for awhile so if you have any questions let me > know. > > Hugs, > Sandy Hi Sandy, I know you don't have time right now with your trip coming up, but if you would share with me about your experience on Enbrel I would love to hear it. I know you are on the Cytoxin now, so did Enbrel not work for you, or did you have a reaction? Concentrate on your trip for now, but please spill the beans for me when you get home. BTW, have a wonderful time! Love, Sharon > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE > ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING > ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE > FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. > REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 --- RCColloran@... wrote: > Sharon so sorry to hear that your meds aren't > working for you. Hope the new > one does.... You will be in my thoughts and > prayers... ************************************************* The meds I am on have definitely helped, but as the doctor said, my disease is just still too active. I am having some sort of flare or other almost constantly. Not full out flares like I had before meds, but flares none the less. ************************************************** > Did you have fun shopping with your sisters..??? > Aren't sisters GREAT!! > Well , Mine is anyway... Just live to far from her > and I miss her... *************************************************** My sisters, one older and one younger, both live within walking distance from me. We try and do a sister's day once a week--at least during the school year. Summer's are a bit more hectic! I think I would die without my sisters. They are my dearest friends and we are always there for each other. ************************************************** > You take care and get some rest... Yeah right.... > How's the baby doing..?? > Hope everyone is fine. > > hugs > > Logan is doing just fine, but my daughter is not. Yesterday her incision started opening. Two places yesterday and one more today. The doc said it is due to a " fluid build-up " and it needs to drain. She taught my son in law how to clean it out and take care of it. Deanna is flat on her back in bed and feeling rather useless. Poor baby! I am going over tomorrow and then will have Cassandra over here on Thursday. Say a prayer for Deanna if you think about it. , you have a great time on thie trip! Even the flight will be well worth it. Talk to you later. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 --- RCColloran@... wrote: > Sharon so sorry to hear that your meds aren't > working for you. Hope the new > one does.... You will be in my thoughts and > prayers... ************************************************* The meds I am on have definitely helped, but as the doctor said, my disease is just still too active. I am having some sort of flare or other almost constantly. Not full out flares like I had before meds, but flares none the less. ************************************************** > Did you have fun shopping with your sisters..??? > Aren't sisters GREAT!! > Well , Mine is anyway... Just live to far from her > and I miss her... *************************************************** My sisters, one older and one younger, both live within walking distance from me. We try and do a sister's day once a week--at least during the school year. Summer's are a bit more hectic! I think I would die without my sisters. They are my dearest friends and we are always there for each other. ************************************************** > You take care and get some rest... Yeah right.... > How's the baby doing..?? > Hope everyone is fine. > > hugs > > Logan is doing just fine, but my daughter is not. Yesterday her incision started opening. Two places yesterday and one more today. The doc said it is due to a " fluid build-up " and it needs to drain. She taught my son in law how to clean it out and take care of it. Deanna is flat on her back in bed and feeling rather useless. Poor baby! I am going over tomorrow and then will have Cassandra over here on Thursday. Say a prayer for Deanna if you think about it. , you have a great time on thie trip! Even the flight will be well worth it. Talk to you later. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Sharon, I did not have a reaction to the Enbrel, it just did not work for me. I was also on Metho, Arava and Pred. at the same time. I know others have had some good results with Enbrel. I thought I'd better respond now because I can't remember anything. LOL I think my brain has been pickled by all the meds. Hugs, Sandy Hi Sandy, I know you don't have time right now withyour trip coming up, but if you would share with meabout your experience on Enbrel I would love to hearit. I know you are on the Cytoxin now, so did Enbrelnot work for you, or did you have a reaction? Concentrate on your trip for now, but please spill thebeans for me when you get home. BTW, have a wonderfultime! Love, Sharon> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE> DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 Hi Sharon, I did not have a reaction to the Enbrel, it just did not work for me. I was also on Metho, Arava and Pred. at the same time. I know others have had some good results with Enbrel. I thought I'd better respond now because I can't remember anything. LOL I think my brain has been pickled by all the meds. Hugs, Sandy Hi Sandy, I know you don't have time right now withyour trip coming up, but if you would share with meabout your experience on Enbrel I would love to hearit. I know you are on the Cytoxin now, so did Enbrelnot work for you, or did you have a reaction? Concentrate on your trip for now, but please spill thebeans for me when you get home. BTW, have a wonderfultime! Love, Sharon> DISCLAIMER!!> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY> INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE> ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING> ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE> FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE.> REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE> DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 --- Sandy Catalusci wrote: > Hi Sharon, > I did not have a reaction to the Enbrel, it just did > not work for me. I was also on Metho, Arava and > Pred. at the same time. > I know others have had some good results with > Enbrel. > I thought I'd better respond now because I can't > remember anything. LOL I think my brain has been > pickled by all the meds. > > Hugs, > Sandy > Thanks for the info, Sandy! Sorry this didn't work for you. So far, the best I've felt was when I was on MTX, Arava, and Pred. Then the MTX side effects just got to be way too much. I'm hopeful that the Enbrel will work for me. Sure willing to try it anyway. I know exactly what you mean about having a pickled brain!! Have a wonderful trip! Love, Sharon > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > > INFORMATION THAT IS RECEIVED HERE IS FROM > EXPERIENCE > > ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE > TRYING > > ANYTHING THAT IS SUGGESTED. WE ARE NOT A > SUBSTITUTE > > FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. > > REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > > DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 --- Sandy Catalusci wrote: > Hi Sharon, > I did not have a reaction to the Enbrel, it just did > not work for me. I was also on Metho, Arava and > Pred. at the same time. > I know others have had some good results with > Enbrel. > I thought I'd better respond now because I can't > remember anything. LOL I think my brain has been > pickled by all the meds. > > Hugs, > Sandy > Thanks for the info, Sandy! Sorry this didn't work for you. So far, the best I've felt was when I was on MTX, Arava, and Pred. Then the MTX side effects just got to be way too much. I'm hopeful that the Enbrel will work for me. Sure willing to try it anyway. I know exactly what you mean about having a pickled brain!! Have a wonderful trip! Love, Sharon > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY > > INFORMATION THAT IS RECEIVED HERE IS FROM > EXPERIENCE > > ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE > TRYING > > ANYTHING THAT IS SUGGESTED. WE ARE NOT A > SUBSTITUTE > > FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. > > REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE > > DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 I've been away from the puter a couple of days....had a houseful of company for my dad's birthday party. Its been extrememly stressful. I've had what I call melt downs, one of them was screaming at my dad then threatening to leave and not come back. The other was just a very long crying jag. I know that all this is due to stress and that in our condition stress needs to be avoided if at all possible. Well my company is gone, my dad is still speaking to me and won't let me leave even if I really wanted to, which I don't. I'm safe here with the people who love me most and are willing to take care of me and put up with all my moods. To those of you that are new to the group, welcome. I have found this to be a place of caring and understanding. Where you can come and scream, cry or laugh depending on which you need at that moment. The love and strength you find here will lift you has perhaps nothing else can, because each one of us goes through the same or similar thing everyday. Take the friendship that is offered and use it to get through those dark days, of pain, depression or just not knowing if we can make it one more day. We can make it one more day because there is someone here for us to lean on when we need to. Kimber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Hi Kimber, Sounds like you've got a bit of steroid overload going on? I know that lately, I've found that I'm reacting-- instead of allowing myself to be quiet and watch what is going on around me. I know that with the immunosupressants, along with menopause, and the NS hitting the part of my brain that controls moods, personality, emotions, problem solving, etc-- that if I get started on a subject that I'm really connected too- I now have a tendency to over-react. It often feels like I'm obsessing-- and that for me is so hard to deal with-- I always liked that I could "deal with it and move on" that was necessary when I worked. Kim-- give yourself a break, cuddle up with a good book, or a blanket and a favorite movie, and just relax. It's time to come down from all the excitement, and your body and brain are sending smoke signals to do that. Take care of you, Tracie NS Co-owner/moderator************************************** Check out free AOL at http://free.aol.com/thenewaol/index.adp. Most comprehensive set of free safety and security tools, millions of free high-quality videos from across the web, free AOL Mail and much more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 , I am glad you are feeling better. I was just wondering that the other day, how you were doing with school. I know you had mentioned starting up again ao May 17th. I am glad you are hanging in there. It's rainy and cooler this weekend. I'm not complaining, though. I love the rain, and I love the cooler weather. I would take the cold over hot any day. Especially now that I get the "flare ups" and sick with the hot, sunny days. When did I ever think I would wake up and HOPE that it wasn't going to be hot out? lol. Take care , and I hope everything continues to go well with school. ChristyJessicAbouhamama@... wrote: Good Morning everyone, It is a beautiful day here and I am feeling somewhat normal compared to last weekend. The group seems pretty quiet so I am hoping this means everyone is feeling ok ??? or the best they can feel. I hope all has beautiful weather so you can go out and enjoy it. well I got through my first week of the new semester in school, and wow is it hard. But it is a good hard, I am learning all about the body and blood and cells ect.... even just the little the one class has touched on so far helps me understand our disease a little better. Who knows maybe one day while I am in school or done I will help find a cure for this Sarc-monster!! Well everyone have a wonderful weekend... Many Blessings and pain free daylove to "ALL" Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. Quote Link to comment Share on other sites More sharing options...
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