Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 - thanks for giving us such a complete update on how you are doing! It is great to hear from you. I am glad that you are working so aggressively to get your stomach issues under control. CONGRATULATIONS on being PRED FREE! Thank you for posting how hard it was to come off pred - it will be helpful to others who are trying to give up the evil candy. Take care of yourself and keep us posted! Addy > > Hi everyone! > > I just thought I'd check in again and give another update. > > Found out some interesting things recently and I'm trying to muddle through > the chaos! > > First, I'd like to note that my prednisone tapering, while an absolute > NIGHTMARE on my body, is FINALLY over. I took my last dose on February 28th > and I am still prednisone FREE up to this point. As of today, when I get > my Xolair, I will have been on the wonderful medication for a full year!!! > > My tapering process was horrid, and I'm still having some side effects. > Apart from a terribly low immune system, I'm experiencing some migraine > headaches, (which I've always had, but seem to be increasing although I'm on > a preventative " topamax " .) and for some reason, I can't tell the difference > between being hungry, thirsty or just being nauseous. Also, it's wreaked > havoc with my clinical depression. I was beginning to even out a mild case > of depression with Zoloft until I began my taper, and then things went > haywire. Now, my insurance company no longer wants to pay for Zoloft, so I > m trying out Lexapro, and I'm in the midst of a major depression. > > I'm seeing a therapist, and trying to stay positive. Some things have > happened in my personal life very recently that were beyond stressful, and a > year ago would have landed me in the hospital. So, my therapist has asked > me to focus on all I've been through and am going through that normally > would have hospitalized me. He told me that these are major accomplishments > and told me to use them as reminders during my depression as to how far I've > come! > > Also, I'd like to add that I've been seeing a gastroenterologist because I'm > still having minor attacks that couldn't seem to be explained. Turns out, I > am aspirating acid from my stomach and don't tolerate it at all well. It > seems to be the trigger that caused my past episodes of nocturnal > respiratory arrest. Right now I have my doctors all debating about whether > or not I should have surgery to correct the problem. It seems that my > esophogeal sphincter is totally useless. My reflux comes all the way up to > my throat, and although we've been able to keep the acid level minimal with > meds like prevacid, it just isn't enough. I'm still aspirating small > amounts of acid, and the tiniest amount triggers me. One doc says I need it > one doc says that it's too great a risk as the procedure can have > complications such as needing the band they use to duplicate the sphincter > muscle to be dilated frequently because it can be too tight. I don't know > what to think about all that, all I can do is talk to my doctors, and trust > that they'll all come to the right decision. I'm so much better now that I > ll take a few minor attacks a day that my inhaler will cure as opposed to > how I was a year ago. > > I know I don't post often, but I do read all of the posts that come through, > and speak to my doctor and nurses when I get my Xolair injections about this > group and they all think this is a wonderful thing. They've asked me to > thank the founders for them, as it's very helpful for Xolair patients to > have a sounding board and be able to talk amongst each other. And, he's > asked me to thank our resident nurses on the group for all of their > expertise and for keeping things from going astray. > > Also, a great big thanks from me, who wouldn't have come this far without > the encouragement from all of you. A year ago I'd have never believed I'd > be prednisone free, and so close to the one year mark of my last hospital > stay! > > ~ in Massachusetts (Prednisone free for 1 month, 11 days and counting) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Thanks Addy! I'm so thrilled to be off of the " evil candy " that I can't even begin to describe. I'd been on 60mg/day for almost two years as a maintenance dose and it was just beginning to give me trouble with my blood sugars. Lucky for me, everything has evened out with that part now that I'm off of it. I'm coping well with all of the aspects of being pred free save for the depression (which isn't necessarily a side effect for everyone, I've struggled with depression for the better part of my life in one form or another) and the trouble with trying to figure out what my stomach is telling me. Migraine, I am used to, so I can't necessarily even say that is a side effect. I may have just been due for a clump of them. This last one was horrid though, it lasted 16 days. My neurologist has me scheduled for an MRI and a CAT scan just to be sure that it was ONLY a migraine. Don't need any other troubles, you know? Thanks so much for all of your support. I truly couldn't have done this without all of you. You, Pat and Doug have been such inspirations to me. Had it not been for you three, I'd have never believed Xolair could do this much for me, and here I am a year later... off of the " evil candy " and figuring out that I have other triggers (reflux and anxiety) besides allergy What an experience! It turns out that just knowing that I have such severe asthma was triggering anxiety related attacks! The Klonipin and Xanax have really helped! I take a Xanax when an attack doesn't IMMEDIATELY respond to my inhaler or neb. Seems to help, what do you know? My daily meds are down to: Singulair 10 mg once per day Advair 50/500 1 puff twice per day Albuterol or Xopenex PRN Klonipin 1mg twice per day Xanax .25mg PRN Topamax 50mg twice per day Imitrex PRN Vicodin PRN Reglan (don't know the mg but 2 at bedtime) Prevacid (don't know the mg but 1 in am) And of course, 300mg of Xolair every 2 weeks Far better than the 20 or so meds I used to be on, and it's a thrill to see that Pulmicort and Prednisone are finally off that list! I know there is flovent in the advair, but I'll take that over what I was previously on! Thanks so much for the encouragement! I'll continue to keep you posted as I stay off my pred. We'll see how long I can make it without the " evil candy " in my system. Do I dare hope to never again have a lung related hospital stay? -------Original Message------- From: pyle456 Date: 04/11/06 07:11:46 Subject: [ ] Re: Checking in again! - thanks for giving us such a complete update on how you are doing! It is great to hear from you. I am glad that you are working so aggressively to get your stomach issues under control. CONGRATULATIONS on being PRED FREE! Thank you for posting how hard it was to come off pred - it will be helpful to others who are trying to give up the evil candy. Take care of yourself and keep us posted! Addy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 Thanks . I too am fighting the evil candy habit (I am on 9mg and counting....) and it is wonderful to see that people do get off it and live to tell the tale! Depression is such a challenge and I am glad shared your story with us. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 hi jennifer, congrats on being pred free! that's great. i know the taper was hard, but i'm sure you'll be on the upswing now!! heather Currier <redsoxkitten@...> wrote: Hi everyone! I just thought I'd check in again and give another update. Found out some interesting things recently and I'm trying to muddle through the chaos! First, I'd like to note that my prednisone tapering, while an absolute NIGHTMARE on my body, is FINALLY over. I took my last dose on February 28th and I am still prednisone FREE up to this point. As of today, when I get my Xolair, I will have been on the wonderful medication for a full year!!! My tapering process was horrid, and I'm still having some side effects. Apart from a terribly low immune system, I'm experiencing some migraine headaches, (which I've always had, but seem to be increasing although I'm on a preventative " topamax " .) and for some reason, I can't tell the difference between being hungry, thirsty or just being nauseous. Also, it's wreaked havoc with my clinical depression. I was beginning to even out a mild case of depression with Zoloft until I began my taper, and then things went haywire. Now, my insurance company no longer wants to pay for Zoloft, so I m trying out Lexapro, and I'm in the midst of a major depression. I'm seeing a therapist, and trying to stay positive. Some things have happened in my personal life very recently that were beyond stressful, and a year ago would have landed me in the hospital. So, my therapist has asked me to focus on all I've been through and am going through that normally would have hospitalized me. He told me that these are major accomplishments and told me to use them as reminders during my depression as to how far I've come! Also, I'd like to add that I've been seeing a gastroenterologist because I'm still having minor attacks that couldn't seem to be explained. Turns out, I am aspirating acid from my stomach and don't tolerate it at all well. It seems to be the trigger that caused my past episodes of nocturnal respiratory arrest. Right now I have my doctors all debating about whether or not I should have surgery to correct the problem. It seems that my esophogeal sphincter is totally useless. My reflux comes all the way up to my throat, and although we've been able to keep the acid level minimal with meds like prevacid, it just isn't enough. I'm still aspirating small amounts of acid, and the tiniest amount triggers me. One doc says I need it one doc says that it's too great a risk as the procedure can have complications such as needing the band they use to duplicate the sphincter muscle to be dilated frequently because it can be too tight. I don't know what to think about all that, all I can do is talk to my doctors, and trust that they'll all come to the right decision. I'm so much better now that I ll take a few minor attacks a day that my inhaler will cure as opposed to how I was a year ago. I know I don't post often, but I do read all of the posts that come through, and speak to my doctor and nurses when I get my Xolair injections about this group and they all think this is a wonderful thing. They've asked me to thank the founders for them, as it's very helpful for Xolair patients to have a sounding board and be able to talk amongst each other. And, he's asked me to thank our resident nurses on the group for all of their expertise and for keeping things from going astray. Also, a great big thanks from me, who wouldn't have come this far without the encouragement from all of you. A year ago I'd have never believed I'd be prednisone free, and so close to the one year mark of my last hospital stay! ~ in Massachusetts (Prednisone free for 1 month, 11 days and counting) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Hi , My name is Lin and i wanted to make a comment. Glad to hear your steriod free there.. i know how that is for sure. You had commented havin migrane headaches and taking topamax for it. I have migranes and thats what my dr. put me on and it has helped me get me threw some rough times there... I also heard the lexapro is good for depression as welll. once you start takin it. Also u had commented on reflux. i had reflux very bad and was havin problems with my spichter stayin open so the acid would come up and then go back down. The dr told me i needed to have surgery. there was no way around it. he said it may work then it may not work. its the chance i had to take. i was on many pills for my reflux at one time. i went ahead and had the surgery. The surgery i had was called a nissian fundoplication... its where they wrap the spinchter so the acid doesnt come up anymore. after i had the surgery i got off all my pills i was taking and now im down to one pill. so im glad of that.... they say reflux and asthma go hand in hand.... so after u get ur reflux takin care of ur asthma should be pretty well under control. I'm glad to hear that the xolair is helping you..... I know since my son has been taking the xolair it has been helping my son a great deal as well. my son is a very severe asthmatic. he as well had to depend on steriod usage as well and many many many hospital stays.... since the xolair we havent seen the hospital for months...... I thank God every day for xolair....!!!!!!!!!!!!!!!!!!!!!!!! I wish everyone on the xolair great success with their health. I also wish you the best of luck with everything else as well.... Have a asthma free day!!!!! Lin from pittsburgh pa heather <heaven1975@...> wrote: hi jennifer, congrats on being pred free! that's great. i know the taper was hard, but i'm sure you'll be on the upswing now!! heather Currier <redsoxkitten@...> wrote: Hi everyone! I just thought I'd check in again and give another update. Found out some interesting things recently and I'm trying to muddle through the chaos! First, I'd like to note that my prednisone tapering, while an absolute NIGHTMARE on my body, is FINALLY over. I took my last dose on February 28th and I am still prednisone FREE up to this point. As of today, when I get my Xolair, I will have been on the wonderful medication for a full year!!! My tapering process was horrid, and I'm still having some side effects. Apart from a terribly low immune system, I'm experiencing some migraine headaches, (which I've always had, but seem to be increasing although I'm on a preventative " topamax " .) and for some reason, I can't tell the difference between being hungry, thirsty or just being nauseous. Also, it's wreaked havoc with my clinical depression. I was beginning to even out a mild case of depression with Zoloft until I began my taper, and then things went haywire. Now, my insurance company no longer wants to pay for Zoloft, so I m trying out Lexapro, and I'm in the midst of a major depression. I'm seeing a therapist, and trying to stay positive. Some things have happened in my personal life very recently that were beyond stressful, and a year ago would have landed me in the hospital. So, my therapist has asked me to focus on all I've been through and am going through that normally would have hospitalized me. He told me that these are major accomplishments and told me to use them as reminders during my depression as to how far I've come! Also, I'd like to add that I've been seeing a gastroenterologist because I'm still having minor attacks that couldn't seem to be explained. Turns out, I am aspirating acid from my stomach and don't tolerate it at all well. It seems to be the trigger that caused my past episodes of nocturnal respiratory arrest. Right now I have my doctors all debating about whether or not I should have surgery to correct the problem. It seems that my esophogeal sphincter is totally useless. My reflux comes all the way up to my throat, and although we've been able to keep the acid level minimal with meds like prevacid, it just isn't enough. I'm still aspirating small amounts of acid, and the tiniest amount triggers me. One doc says I need it one doc says that it's too great a risk as the procedure can have complications such as needing the band they use to duplicate the sphincter muscle to be dilated frequently because it can be too tight. I don't know what to think about all that, all I can do is talk to my doctors, and trust that they'll all come to the right decision. I'm so much better now that I ll take a few minor attacks a day that my inhaler will cure as opposed to how I was a year ago. I know I don't post often, but I do read all of the posts that come through, and speak to my doctor and nurses when I get my Xolair injections about this group and they all think this is a wonderful thing. They've asked me to thank the founders for them, as it's very helpful for Xolair patients to have a sounding board and be able to talk amongst each other. And, he's asked me to thank our resident nurses on the group for all of their expertise and for keeping things from going astray. Also, a great big thanks from me, who wouldn't have come this far without the encouragement from all of you. A year ago I'd have never believed I'd be prednisone free, and so close to the one year mark of my last hospital stay! ~ in Massachusetts (Prednisone free for 1 month, 11 days and counting) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2006 Report Share Posted April 12, 2006 Thank you Lin, for sharing with me. That is the exact procedure that my doctors are discussing with me and amongst themselves right now. It's good to hear a success story. I'll speak to my doctor and let him know that I've heard from another Xolair patient that had the same problem and a successful surgery. Thank you so much for your advice and sharing your story with me. I'm glad that you and your son are so much improved with Xolair. I thank God every day for the scientists that created it! ~ -------Original Message------- From: no1friend621 Date: 04/12/06 07:58:44 Subject: Re: [ ] Checking in again! Hi , My name is Lin and i wanted to make a comment. Glad to hear your steriod free there.. i know how that is for sure. You had commented havin migrane headaches and taking topamax for it. I have migranes and thats what my dr. put me on and it has helped me get me threw some rough times there... I also heard the lexapro is good for depression as welll. once you start takin it. Also u had commented on reflux. i had reflux very bad and was havin problems with my spichter stayin open so the acid would come up and then go back down. The dr told me i needed to have surgery. there was no way around it. he said it may work then it may not work. its the chance i had to take. i was on many pills for my reflux at one time. i went ahead and had the surgery. The surgery i had was called a nissian fundoplication... its where they wrap the spinchter so the acid doesnt come up anymore. after i had the surgery i got off all my pills i was taking and now im down to one pill. so im glad of that.... they say reflux and asthma go hand in hand.... so after u get ur reflux takin care of ur asthma should be pretty well under control. I'm glad to hear that the xolair is helping you..... I know since my son has been taking the xolair it has been helping my son a great deal as well. my son is a very severe asthmatic. he as well had to depend on steriod usage as well and many many many hospital stays.... since the xolair we havent seen the hospital for months...... I thank God every day for xolair....!!!!!!!!!!!!!!!!!!!!!!!! I wish everyone on the xolair great success with their health. I also wish you the best of luck with everything else as well.... Have a asthma free day!!!!! Lin from pittsburgh pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2006 Report Share Posted April 13, 2006 Lin, It's great to know your son is still doing well. My favorite posts are the ones from parents sharing how their children have improved on Xolair. I have been severely allergic asthmatic since I was three years old and even now my parents are so grateful for Xolair. They are so glad that there is such a wonderful solution for parents today, even if it wasn't available when I was growing up. > Hi everyone! > > I just thought I'd check in again and give another update. > > Found out some interesting things recently and I'm trying to muddle through > the chaos! > > First, I'd like to note that my prednisone tapering, while an absolute > NIGHTMARE on my body, is FINALLY over. I took my last dose on February 28th > and I am still prednisone FREE up to this point. As of today, when I get > my Xolair, I will have been on the wonderful medication for a full year!!! > > My tapering process was horrid, and I'm still having some side effects. > Apart from a terribly low immune system, I'm experiencing some migraine > headaches, (which I've always had, but seem to be increasing although I'm on > a preventative " topamax " .) and for some reason, I can't tell the difference > between being hungry, thirsty or just being nauseous. Also, it's wreaked > havoc with my clinical depression. I was beginning to even out a mild case > of depression with Zoloft until I began my taper, and then things went > haywire. Now, my insurance company no longer wants to pay for Zoloft, so I > m trying out Lexapro, and I'm in the midst of a major depression. > > I'm seeing a therapist, and trying to stay positive. Some things have > happened in my personal life very recently that were beyond stressful, and a > year ago would have landed me in the hospital. So, my therapist has asked > me to focus on all I've been through and am going through that normally > would have hospitalized me. He told me that these are major accomplishments > and told me to use them as reminders during my depression as to how far I've > come! > > Also, I'd like to add that I've been seeing a gastroenterologist because I'm > still having minor attacks that couldn't seem to be explained. Turns out, I > am aspirating acid from my stomach and don't tolerate it at all well. It > seems to be the trigger that caused my past episodes of nocturnal > respiratory arrest. Right now I have my doctors all debating about whether > or not I should have surgery to correct the problem. It seems that my > esophogeal sphincter is totally useless. My reflux comes all the way up to > my throat, and although we've been able to keep the acid level minimal with > meds like prevacid, it just isn't enough. I'm still aspirating small > amounts of acid, and the tiniest amount triggers me. One doc says I need it > one doc says that it's too great a risk as the procedure can have > complications such as needing the band they use to duplicate the sphincter > muscle to be dilated frequently because it can be too tight. I don't know > what to think about all that, all I can do is talk to my doctors, and trust > that they'll all come to the right decision. I'm so much better now that I > ll take a few minor attacks a day that my inhaler will cure as opposed to > how I was a year ago. > > I know I don't post often, but I do read all of the posts that come through, > and speak to my doctor and nurses when I get my Xolair injections about this > group and they all think this is a wonderful thing. They've asked me to > thank the founders for them, as it's very helpful for Xolair patients to > have a sounding board and be able to talk amongst each other. And, he's > asked me to thank our resident nurses on the group for all of their > expertise and for keeping things from going astray. > > Also, a great big thanks from me, who wouldn't have come this far without > the encouragement from all of you. A year ago I'd have never believed I'd > be prednisone free, and so close to the one year mark of my last hospital > stay! > > ~ in Massachusetts (Prednisone free for 1 month, 11 days and counting) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 Jane: You made my day - what an inspiration! in Texas JANE <janeatregis@...> wrote: Good afternoon my RA family! I am finally back on enbrel after three months off (insurance/cheapskate boss related.) It was a long three months, needless to say! As yall know, we've gone through losing my brother to COPD, my niece having stage IV breast cancer, losing our apartment to a flood and relocating, having my youngest in Africa as a summer missionary...but God is GOOD, honey! He gives me new mercy for every day, and most days I can get up and come to work. Boss is not so hot but the employees are like family after 20+ years together. And my baby is coming home Saturday for a brief respite between mission trips, she is off to Alaska next month to lead worship and counsel for a camp for disadvantaged youth. So home is pretty much a place to do laundry and get spoiled for a little bit...which is fine with Mom! It's already getting hot in Texas. Hope everyone can keep cool and wishing lots of pain free, home made ice cream, playing in the sprinkler days. God bless, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2007 Report Share Posted June 13, 2007 (((Jane))),....I didn't know you and family have been through so much, I am so very sorry. Glad your back on the Enbrel, I know it was helping you. Glad your girl is coming home for awhile, I know you miss her. My prayers are with you my friend, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2007 Report Share Posted June 14, 2007 Thanks girlfriend! I am taking the day off Monday to spend a little time with her. Her dad wants her to come down to his place for a few days, he's been looking for a new car for her to replace the gas-hog truck she's had for almost five years now. We just have to make the most of every minute she's home nowadays! You're in my prayers as well. Love, Jane > > (((Jane))),....I didn't know you and family have been through so much, > I am so very sorry. Glad your back on the Enbrel, I know it was > helping you. Glad your girl is coming home for awhile, I know you > miss her. My prayers are with you my friend, Tawny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2007 Report Share Posted June 14, 2007 Glad your taking the day off, how nice! I'm glad Dad will be getting her a cheaper car:) We recently traded are Ford 150 in, for a Jeep Liberty, just too much gas. You have fun with your girl, and I'll keep you in my prayers always, Tawny Quote Link to comment Share on other sites More sharing options...
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