Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Hi Toni,....I'm doing better, just taking it easy for now. I'm having stomach problems right now from the Motrin. So, your busy with your daughter's activities, that's cool. I'm glad your there for them, I'm sure they will do great. Wow Toni, Is that wise to go off all your meds? Is your pain better, and the RA is in remission? I still worry about you, because you know how the progression of the disease is. If you don't have coverage, you can get in one of the patient's assistance programs. I know when I'm ill, and have to go off the Humira, I'm almost totally down, and the pain is severe. I just don't won't to see you go down, these meds help keep us active. Please don't get upset with me, I'm just worried about you, please take care of yourself, Tawny > Hello to all! Tawny so sorry to hear you have been sick. I have been behind > on my reading. I have been very busy with my daughters with band and school. > This is a very busy time of year for me. > > I am officially off of all meds now. I have run out of everything and > stopped all meds. I can no longer afford to keep this insurance coverage. > Hopefully we will have new coverage next year. I did call my rheummy's nurse and left > a message to let him know that I have stopped all meds. so far no response. > Its nice not to have to stick myself twice weekly or take a handful of pills > daily. I am thinking if all goes well I am not even going to bother to go back > to the rheummy. > > I have syringes for MTX and a bunch of alcohol wipes I will be throwing out > if I can't find someone to give them too. I also have a cooler for Enbrel and a > bunch of enbrel stuff they have sent me. I have no use for any of this stuff. > > Toni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Tawny, Glad to hear you are doing better. Sorry to hear aboutthe stomach problems. I hope your doc can offer you a solution. Motrin is good stuff but it is hard on the stomach. How is doing with school? I know she is keeping you busy these days. Yes, this time of the year is very busy for us with football season and band. I spend most of the fall travelling with the girls to the various contests and events surrounding the band. As far as my meds are concerned, no clue if its wise or not..but I have no more..so continuing is not an option. I really was not on a bunch of stuff to begin with as I had eliminated a lot of the meds he was prescribing. I really felt like he was over medicating!!!! So I was suppose to be taking Enbrel, Bextra, Methotrexate, Folic Acid and Luecovorin. Since he decided to restart the MTX a few weeks ago, it has been in short supply to I never started it. So all I was taking was Enbrel and Bextra. The less meds, the better. I was really tired of wasting money on all these meds and they really do nothing...but cause nasty side effects. I want to see what my labs look like off all meds over a period of time. I am wondering if I really have RA or not. So doc is going to have to find hardcore proof before I go back on ANY meds at all and then he is going to have to convience me. Pain levels are normal for me....I never really had terrible pain. I have a very high pain tolerance....so I tend to ignor most pain and take nothing for it. The only time it may become an issue is if it wakes me from sleep. I don't know what defines remission..so I really have no idea if I am there or not. I am not interested in any of the patient assistance programs nor would we qualify. I really am tired of the hassles. I will just wait and see what happens if or when we change insurance companies. Hubby has coverage but it does not cover much without my insurance in effect. My doc's office is so stupid....he probably won't even mention the patient assistance programs anyway. Shessh if you ask for samples, they act like you killed there dog! LOL As far as being active is concerned, I am far more active and alert off meds than on!!! Shessh...I did a major drumline competition with my daughter over the weekend. If I was on meds I would be asleep in a corner somewhere!!!! Which is the point I have been trying to make with my doctor. If the meds leave me feeling so bad that I do nothing..what is the point?? Its amazing how all my doc wants to do is cram pills or shots into me. He never listens when I tell him about whatever side effects I am getting and how it effects my daily activities. So I have done it his way and now I am doing it MY way....after all it is MY body. I could never get upset at you Tawny. Toni In a message dated 9/23/2004 7:10:19 AM Central Daylight Time, writes: Date: Thu, 23 Sep 2004 03:53:54 -0000 From: " Tawny " <tawnyokc@...> Subject: Re: Checking in! Hi Toni,....I'm doing better, just taking it easy for now. I'm having stomach problems right now from the Motrin. So, your busy with your daughter's activities, that's cool. I'm glad your there for them, I'm sure they will do great. Wow Toni, Is that wise to go off all your meds? Is your pain better, and the RA is in remission? I still worry about you, because you know how the progression of the disease is. If you don't have coverage, you can get in one of the patient's assistance programs. I know when I'm ill, and have to go off the Humira, I'm almost totally down, and the pain is severe. I just don't won't to see you go down, these meds help keep us active. Please don't get upset with me, I'm just worried about you, please take care of yourself, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Toni, I know this is an affordability issue for you, but how are you feeling? Are you going to stop cobra insurance now? If you have zero insurance coverage for a period of time, when you get it again next year they can call the RA a pre-existing condition and not cover it at all, can't they? I'm worried about you too. Jennie > Hello to all! Tawny so sorry to hear you have been sick. I have been behind > on my reading. I have been very busy with my daughters with band and school. > This is a very busy time of year for me. > > I am officially off of all meds now. I have run out of everything and > stopped all meds. I can no longer afford to keep this insurance coverage. > Hopefully we will have new coverage next year. I did call my rheummy's nurse and left > a message to let him know that I have stopped all meds. so far no response. > Its nice not to have to stick myself twice weekly or take a handful of pills > daily. I am thinking if all goes well I am not even going to bother to go back > to the rheummy. > > I have syringes for MTX and a bunch of alcohol wipes I will be throwing out > if I can't find someone to give them too. I also have a cooler for Enbrel and a > bunch of enbrel stuff they have sent me. I have no use for any of this stuff. > > Toni > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Jennie, I feel fine. I have a bad case of kick butt allergies...but that is pretty normal for this time of year. I have already stopped my COBRA coverage. It was just too expensive. I had some major car repairs last month that just wiped me out. Hubby has insurance coverage, but its not very good. Besides going to see the rheummy, I go to the doc once maybe twice a year. I kept my insurance not for rheummy coverage but because I had weight loss surgical procedure and it covered all my follow up 100% until the end of the year. Hubby's insurance does not cover the weight loss care, nor does it cover most of the RA related meds I was on. so I will still have coverage..just not my very conprehensive coverage. I would be loosing the COBRA coverage at the end of the 18 months anyway, plus my company did not write if the option for me to switch to total self insuranced. So there was not option to continue this coverage at the end of the 18 months. Plus they do not write individual policies unless you have this clause. So I would be dropped off anyway. This is just sooner than planned. Quite frankly I am pretty tired of the whole RA thing.....so if they don't cover it, it really would not phase me at this point. These insurance companies are getting so fickled anyway!!! I was just greatful to get my weightloss surgery in during the time I could afford the coverage. Toni > > Hello to all! Tawny so sorry to hear you have been sick. I have > been behind > > on my reading. I have been very busy with my daughters with band > and school. > > This is a very busy time of year for me. > > > > I am officially off of all meds now. I have run out of everything > and > > stopped all meds. I can no longer afford to keep this insurance > coverage. > > Hopefully we will have new coverage next year. I did call my > rheummy's nurse and left > > a message to let him know that I have stopped all meds. so far no > response. > > Its nice not to have to stick myself twice weekly or take a handful > of pills > > daily. I am thinking if all goes well I am not even going to > bother to go back > > to the rheummy. > > > > I have syringes for MTX and a bunch of alcohol wipes I will be > throwing out > > if I can't find someone to give them too. I also have a cooler for > Enbrel and a > > bunch of enbrel stuff they have sent me. I have no use for any of > this stuff. > > > > Toni > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 I'm glad you are feeling fine. That is truly a beautiful thing. I would love someday to stop medication and remain in remission. But I know if I stopped now, everything would freeze up and I'd be in bed for at least 1/2 the day, maybe all day. I haven't been without medication since my symptoms started, but sometimes I forget to take it and I really feel it when I do. I hope this continues and you don't have to worry about RA ever again. Jennie > > > Hello to all! Tawny so sorry to hear you have been sick. I have > > been behind > > > on my reading. I have been very busy with my daughters with band > > and school. > > > This is a very busy time of year for me. > > > > > > I am officially off of all meds now. I have run out of > everything > > and > > > stopped all meds. I can no longer afford to keep this insurance > > coverage. > > > Hopefully we will have new coverage next year. I did call my > > rheummy's nurse and left > > > a message to let him know that I have stopped all meds. so far > no > > response. > > > Its nice not to have to stick myself twice weekly or take a > handful > > of pills > > > daily. I am thinking if all goes well I am not even going to > > bother to go back > > > to the rheummy. > > > > > > I have syringes for MTX and a bunch of alcohol wipes I will be > > throwing out > > > if I can't find someone to give them too. I also have a cooler > for > > Enbrel and a > > > bunch of enbrel stuff they have sent me. I have no use for any > of > > this stuff. > > > > > > Toni > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Jennie, I am so sorry that you have not gotten any relief from your symtoms. I hope that some day soon that you will. I am not the type of person that is long term complient with meds. I do fine for a short period of time but not for months or years. Not to mention if the med causes side effects, discomfort or inconvience you can forget me even bothering to remember to take it. This was the case with my RA meds. It got so bad that I was even forgetting to refill my meds when they ran out. The cost was always an issue as well. When I started on Enbrel I did notice a great improvement. Then it stopped working. I am sure skipping shots every week or two did not help much. Then there were a few times I forgot as long as a month or more, plus I was off my meds for surgery. When I restarted the Enbrel it did nothing. So I didn't bother refilling it. Its very expensive. I also began to get bumps and swelling when I restarted and the shots started to hurt. I wish there was a biologic pill or patch..cause the shots get pretty old pretty quick. I am greatful that I am not diabetic....cause would probably be dead from not taking my medication. Then again diabetics have the option to use a pump...too bad we don't have the option of a pump. I a going to wait it out and see what happens. I plan to tell my doc nothing!!!! He is a bonehead and never listens anyway. I want to see if my labs change any. I am not even sure if I really have RA. I was not diagnosised by this doc I currently use. I wish there was some test that would definately say we do or we don't have RA. Toni > > > > Hello to all! Tawny so sorry to hear you have been sick. I > have > > > been behind > > > > on my reading. I have been very busy with my daughters with > band > > > and school. > > > > This is a very busy time of year for me. > > > > > > > > I am officially off of all meds now. I have run out of > > everything > > > and > > > > stopped all meds. I can no longer afford to keep this > insurance > > > coverage. > > > > Hopefully we will have new coverage next year. I did call my > > > rheummy's nurse and left > > > > a message to let him know that I have stopped all meds. so far > > no > > > response. > > > > Its nice not to have to stick myself twice weekly or take a > > handful > > > of pills > > > > daily. I am thinking if all goes well I am not even going to > > > bother to go back > > > > to the rheummy. > > > > > > > > I have syringes for MTX and a bunch of alcohol wipes I will be > > > throwing out > > > > if I can't find someone to give them too. I also have a cooler > > for > > > Enbrel and a > > > > bunch of enbrel stuff they have sent me. I have no use for any > > of > > > this stuff. > > > > > > > > Toni > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Toni, I thankfully do have relief from my symptoms... as long as I don't stop the mtx or Humira. I just know that if I did stop them, I would be frozen completely stiff and not able to work or take care of my daughter or do anything. It's happened before and I feel it coming back if I forget to take my medication. Jennie --- In , " Ms radar " <aclavern33@a...> wrote: > Jennie, > > I am so sorry that you have not gotten any relief from your symtoms. > I hope that some day soon that you will. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Hello everyone! I just wanted to check in and let everyone know how I'm doing! I've been on Xolair now since April of 2004 and I've improved greatly! By the end of February, I will be completely off of prednisone, and I'm so thrilled. Spoke with my doctor about the side effects I've been experiencing through the weaning process which have been HORRID! Add to that the anxiety of not having that " safety net " and I've been on an emotional roller coaster for the past few months. I was also becoming extremely anxious thinking that being off of prednisone would mean losing my social security disability. My doctor told me to have no fear. He said that he's not prepared to clear me for work for at least another two to three years. His feeling about it is that I'm on Xolair which is a very high tech medication, and he's going to be starting me on allergy shots soon as well. Plus, right now, I'm still in a controlled environment (my home) and that tossing me back into the workplace could cause me to have a huge set back. He said that my medication regimen that has me stable is far too complicated and delicate to be trusted as yet for the workplace. We've learned some things over the last several months. One of them was that my asthma had become so severe and debilitating that anxiety alone was causing a large number of bad attacks. I now take 1 mg of klonopin twice a day and I have .25 mg of Xanax PRN for situations that I know could cause anxiety (large crowds, being far away from the hospital or home) and it's helped me so much. Who knew? I asked him if he thought I would be okay to take some classes at my local community college (2 year programs). He smirked at me and asked me what I wanted to study. I told him that I wanted to study nursing or respiratory therapy. He told me to go right ahead, and that I should have my degree in hand before I have to worry about losing my disability. Apart from the allergy shots, next steps include getting a bone density test (I've been on a maintenance dose of pred for 7 years and been on 60mg/day for the last 2 years) and monitoring my blood sugar. He's done blood work to see how my adrenal glands are functioning at this point, and he said that I'm doing surprisingly well for someone that's been on such high levels of steroids. Also, in other great news, I've shocked the heck out of him by losing 25 lbs while still on prednisone! As soon as I began tapering on November 1st, I began losing weight and it just keeps coming off! He said that he's never seen someone able to lose weight while still on steroids, it usually starts coming off a few weeks after they are completely out of your system. So, he s going to be monitoring my weight closely because he said it could come off a little " too fast " when I'm finally done with the pred. So here I am, not quite a year later, there is a film of dust on one of my nebulizers, I rarely need my inhaler when out of the house (mostly when I pass a smoker on my way into a store) and my life has changed so much! No more grabbing my inhaler in the morning just to make it to the bathroom 5 steps away from my bedroom door. No more keeping my inhaler in my pocket all day long, no more waking 4 or 5 times during the night to neb... it's been surreal. For the first winter in 7 years I haven't had an attack simply by walking into the cold air outside. I can make it up flights of stairs without wheezing and feeling faint by the time I hit the top or having to stop halfway! I've even been given permission to exercise moderately! Doc's instructions for right now are to pick an hour long television program and to walk in place during the commercial breaks. I cried and hugged him at that point. I was an athlete in high school, and running was my thing. I ran 5 miles a day into my early 20's. And to hear something other than go home, take it easy, don't overexert " was like music to my ears. So, for all of you " newbies " , I want you to know that this didn't happen overnight. The relief didn't come instantly for me. I noticed the biggest change around the six month mark. That's just when I was starting to lose faith. And if it weren't for Pat, and Addy and Doug, among other regulars, I might have given up hope. Keep taking it for at least a year, because it really does work differently and in different time frames for different people. I haven't had an ER trip or hospital stay since May of 2004 and that is SUCH a record for me! Happy Breathing everyone, keep the faith! And thanks to all of you for your support and information! I told my doc about this group and he thinks it's the best thing going!!! ~ in Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2006 Report Share Posted January 20, 2006 Sorry, I wanted to fix a typo! My last hospital stay was in May of 2005! Still a record though!!! -------Original Message------- From: Currier Date: 01/20/06 13:09:45 Subject: [ ] Checking in! Hello everyone! I just wanted to check in and let everyone know how I'm doing! I've been on Xolair now since April of 2004 and I've improved greatly! By the end of February, I will be completely off of prednisone, and I'm so thrilled. Spoke with my doctor about the side effects I've been experiencing through the weaning process which have been HORRID! Add to that the anxiety of not having that " safety net " and I've been on an emotional roller coaster for the past few months. I was also becoming extremely anxious thinking that being off of prednisone would mean losing my social security disability. My doctor told me to have no fear. He said that he's not prepared to clear me for work for at least another two to three years. His feeling about it is that I'm on Xolair which is a very high tech medication, and he's going to be starting me on allergy shots soon as well. Plus, right now, I'm still in a controlled environment (my home) and that tossing me back into the workplace could cause me to have a huge set back. He said that my medication regimen that has me stable is far too complicated and delicate to be trusted as yet for the workplace. We've learned some things over the last several months. One of them was that my asthma had become so severe and debilitating that anxiety alone was causing a large number of bad attacks. I now take 1 mg of klonopin twice a day and I have .25 mg of Xanax PRN for situations that I know could cause anxiety (large crowds, being far away from the hospital or home) and it's helped me so much. Who knew? I asked him if he thought I would be okay to take some classes at my local community college (2 year programs). He smirked at me and asked me what I wanted to study. I told him that I wanted to study nursing or respiratory therapy. He told me to go right ahead, and that I should have my degree in hand before I have to worry about losing my disability. Apart from the allergy shots, next steps include getting a bone density test (I've been on a maintenance dose of pred for 7 years and been on 60mg/day for the last 2 years) and monitoring my blood sugar. He's done blood work to see how my adrenal glands are functioning at this point, and he said that I'm doing surprisingly well for someone that's been on such high levels of steroids. Also, in other great news, I've shocked the heck out of him by losing 25 lbs while still on prednisone! As soon as I began tapering on November 1st, I began losing weight and it just keeps coming off! He said that he's never seen someone able to lose weight while still on steroids, it usually starts coming off a few weeks after they are completely out of your system. So, he s going to be monitoring my weight closely because he said it could come off a little " too fast " when I'm finally done with the pred. So here I am, not quite a year later, there is a film of dust on one of my nebulizers, I rarely need my inhaler when out of the house (mostly when I pass a smoker on my way into a store) and my life has changed so much! No more grabbing my inhaler in the morning just to make it to the bathroom 5 steps away from my bedroom door. No more keeping my inhaler in my pocket all day long, no more waking 4 or 5 times during the night to neb... it's been surreal. For the first winter in 7 years I haven't had an attack simply by walking into the cold air outside. I can make it up flights of stairs without wheezing and feeling faint by the time I hit the top or having to stop halfway! I've even been given permission to exercise moderately! Doc's instructions for right now are to pick an hour long television program and to walk in place during the commercial breaks. I cried and hugged him at that point. I was an athlete in high school, and running was my thing. I ran 5 miles a day into my early 20's. And to hear something other than go home, take it easy, don't overexert " was like music to my ears. So, for all of you " newbies " , I want you to know that this didn't happen overnight. The relief didn't come instantly for me. I noticed the biggest change around the six month mark. That's just when I was starting to lose faith. And if it weren't for Pat, and Addy and Doug, among other regulars, I might have given up hope. Keep taking it for at least a year, because it really does work differently and in different time frames for different people. I haven't had an ER trip or hospital stay since May of 2004 and that is SUCH a record for me! Happy Breathing everyone, keep the faith! And thanks to all of you for your support and information! I told my doc about this group and he thinks it's the best thing going!!! ~ in Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 - I LOVED reading every bit of your letter. I am so happy for you. You have made HUGE gains. Thank you for checking in and letting us know how you have progressed! I, too, had really terrible symptoms coming of prednisone. Because I had been doing short term tapers, I didn't expect it to be that bad. But 2 tapers per month for well over a year is still a lot of pred. Absolutely get a bone density test. I got my first one at 36 and already had bone loss. If I have any more loss show up, I'll have to start bone-building meds regardless of whether or not I've hit menopause. Congratulations on sticking with it and even more so on starting to get your life back. Addy FYI - I never did great on allergy shots. Absolutely worth a try, but you may not notice any difference. On the other hand, they may be very helpful to you. > > Hello everyone! > > I just wanted to check in and let everyone know how I'm doing! > > I've been on Xolair now since April of 2004 and I've improved greatly! By > the end of February, I will be completely off of prednisone, and I'm so > thrilled. Spoke with my doctor about the side effects I've been > experiencing through the weaning process which have been HORRID! Add to > that the anxiety of not having that " safety net " and I've been on an > emotional roller coaster for the past few months. > > I was also becoming extremely anxious thinking that being off of prednisone > would mean losing my social security disability. My doctor told me to have > no fear. He said that he's not prepared to clear me for work for at least > another two to three years. His feeling about it is that I'm on Xolair > which is a very high tech medication, and he's going to be starting me on > allergy shots soon as well. Plus, right now, I'm still in a controlled > environment (my home) and that tossing me back into the workplace could > cause me to have a huge set back. He said that my medication regimen that > has me stable is far too complicated and delicate to be trusted as yet for > the workplace. > > We've learned some things over the last several months. One of them was > that my asthma had become so severe and debilitating that anxiety alone was > causing a large number of bad attacks. I now take 1 mg of klonopin twice a > day and I have .25 mg of Xanax PRN for situations that I know could cause > anxiety (large crowds, being far away from the hospital or home) and it's > helped me so much. Who knew? > > I asked him if he thought I would be okay to take some classes at my local > community college (2 year programs). He smirked at me and asked me what I > wanted to study. I told him that I wanted to study nursing or respiratory > therapy. He told me to go right ahead, and that I should have my degree in > hand before I have to worry about losing my disability. > > Apart from the allergy shots, next steps include getting a bone density test > (I've been on a maintenance dose of pred for 7 years and been on 60mg/day > for the last 2 years) and monitoring my blood sugar. He's done blood work > to see how my adrenal glands are functioning at this point, and he said that > I'm doing surprisingly well for someone that's been on such high levels of > steroids. > > Also, in other great news, I've shocked the heck out of him by losing 25 lbs > while still on prednisone! As soon as I began tapering on November 1st, I > began losing weight and it just keeps coming off! He said that he's never > seen someone able to lose weight while still on steroids, it usually starts > coming off a few weeks after they are completely out of your system. So, he > s going to be monitoring my weight closely because he said it could come off > a little " too fast " when I'm finally done with the pred. > > So here I am, not quite a year later, there is a film of dust on one of my > nebulizers, I rarely need my inhaler when out of the house (mostly when I > pass a smoker on my way into a store) and my life has changed so much! No > more grabbing my inhaler in the morning just to make it to the bathroom 5 > steps away from my bedroom door. No more keeping my inhaler in my pocket > all day long, no more waking 4 or 5 times during the night to neb... it's > been surreal. For the first winter in 7 years I haven't had an attack > simply by walking into the cold air outside. I can make it up flights of > stairs without wheezing and feeling faint by the time I hit the top or > having to stop halfway! I've even been given permission to exercise > moderately! > > Doc's instructions for right now are to pick an hour long television program > and to walk in place during the commercial breaks. I cried and hugged him > at that point. I was an athlete in high school, and running was my thing. > I ran 5 miles a day into my early 20's. And to hear something other than > go home, take it easy, don't overexert " was like music to my ears. > > So, for all of you " newbies " , I want you to know that this didn't happen > overnight. The relief didn't come instantly for me. I noticed the biggest > change around the six month mark. That's just when I was starting to lose > faith. And if it weren't for Pat, and Addy and Doug, among other regulars, > I might have given up hope. Keep taking it for at least a year, because it > really does work differently and in different time frames for different > people. I haven't had an ER trip or hospital stay since May of 2004 and > that is SUCH a record for me! > > Happy Breathing everyone, keep the faith! And thanks to all of you for your > support and information! I told my doc about this group and he thinks it's > the best thing going!!! > > ~ in Massachusetts > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 hi jennifer, what a great success story you shared. i'm glad things are going so excellent for you!!! coming off the prednisone is rough. its my least favorite part about needing it. (fortunately, thanks to xolair, no pred for me since june 05). i'm thrilled for you -- that you are doing so well. good luck going back to school. i truely belive the world needs more nurses -- nurses who are sympathetic and empathetic . if you decide to go for RT, you'll be such an assett since you're familiar not only with the meds, but the feelings people ahve when dealing with all of it. i'm sure whatever you do, you'll be great!!! good luck with the allergy shots. maybe they'll be that missing link you've been looking for. thanks again for sharing your story -- its a great one!! heather " There is a time in every man's education when he arrives at the conviction that envy is ignorance; that imitation is suicide; that he must take himself for better, for worse, as his portion; that though the wide universe is full of good, no kernel of nourishing corn can come to him but through his toil bestowed on that plot of ground which is given to him to till. " -- Ralph Waldo Emerson --------------------------------- What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 , I'm thrilled for you! It just takes time. I can't tell you how many success stories I hear at work and here in the chat room. People tied to their oxygen tank, as well as 80 to 120mg prednisone, nebulizing atleast 6 times a day, rescue inhalers in between, Advair, Singulair, and Spiriva as well as Xanax are off most if not all of their meds. The ones I want everyone off of are Prednisone and Oxygen. I am so pleased for you. Keep up the good work! The prednisone pounds will come off for everyone. My suggestion is take the amount of pounds you weigh, divide it by 2, and drink that much water in ounces every day. It might take a while to build up to that much water, but believe me, it will help flush the body of those predni8sone pounds. Add a squirt of lemon juice in each glass if you wish. If anyone has kidney or heart problems they should ask their physician first about that much water intake. Everyone can be a success story like you . Thank you for sharing your experience! Pat --------------------------------- Photos Got holiday prints? See all the ways to get quality prints in your hands ASAP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Sorry I'm so long in responding to these posts, but things got hectic around here. My daughter's birthday is Jan 18 and mine is Jan 19, so there was a ton of chaos, surrounded by cleaning house for a slumber party and family party for her. Thank you so much for your kind words and encouragement Addy. I truly could not have gotten this far without all of you! Coming off of the prednisone is really scary. I'm experiencing horrifying mood shifts despite being on an antidepressant and anti-anxiety meds. I seem to have no appetite, almost constant nausea and bowel trouble as well. I have to remind myself to eat three meals a day and sometimes have to take a phenergan before hand so that my meals won't come back up on me if the nausea is bad. I'm also going through terrible muscle and joint aches. Seems like every time I drop the dose 24-48 hours later I wake up so sore I feel like I've gotten the flu. Even my SKIN seems to hurt some days! My bone density test will be scheduled at my next Xolair appointment (Tuesday) and I'm dying to know the results. I had terrible kidney and bladder trouble as a child and had chronic UTI's. I had surgery when I was five to correct a birth defect, but my family and doctors were always pushing cranberry juice and water on me, so I know I didn't drink as much milk or get the calcium I should have as a child. Add the steroids to that, both pred and solu-medrol in all those hospital stays and it equals " YIKES " in my mind! I am also a bit nervous about the allergy shots. I'm hoping the Xolair saves me on that one. I've tried immunotherapy twice before in my life. Once at age 14 and once again at age 24. (I just turned 30 last week) Both times they had to stop because I was having systemic reactions to incredibly small doses of the allergens. But, my doc thinks it's worth a go and he said that there are different serums out there and it's possible that the base caused the reactions to be worse. So.... one day at a time, and I'm just going to continue being thankful for each day my neb goes unused! Thanks again for all of your support! ~ -------Original Message------- From: pyle456 Date: 01/20/06 19:33:27 Subject: [ ] Re: Checking in! - I LOVED reading every bit of your letter. I am so happy for you. You have made HUGE gains. Thank you for checking in and letting us know how you have progressed! I, too, had really terrible symptoms coming of prednisone. Because I had been doing short term tapers, I didn't expect it to be that bad. But 2 tapers per month for well over a year is still a lot of pred. Absolutely get a bone density test. I got my first one at 36 and already had bone loss. If I have any more loss show up, I'll have to start bone-building meds regardless of whether or not I've hit menopause. Congratulations on sticking with it and even more so on starting to get your life back. Addy FYI - I never did great on allergy shots. Absolutely worth a try, but you may not notice any difference. On the other hand, they may be very helpful to you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Thank you so much , for your kind words and encouragement. Everyone in my family has always said I'd make a great nurse, and my doctors are ALL pulling for me to go into respiratory therapy. But they said either way they know I can do it and they know I'll be great at it. Means a lot coming from doctors and friends that are professional patients like me! -------Original Message------- From: heather Date: 01/21/06 08:24:42 Subject: Re: [ ] Checking in! hi jennifer, what a great success story you shared. i'm glad things are going so excellent for you!!! coming off the prednisone is rough. its my least favorite part about needing it. (fortunately, thanks to xolair, no pred for me since june 05). i'm thrilled for you -- that you are doing so well. good luck going back to school. i truely belive the world needs more nurses -- nurses who are sympathetic and empathetic . if you decide to go for RT, you'll be such an assett since you're familiar not only with the meds, but the feelings people ahve when dealing with all of it. i'm sure whatever you do, you'll be great!!! good luck with the allergy shots. maybe they'll be that missing link you ve been looking for. thanks again for sharing your story -- its a great one!! heather " There is a time in every man's education when he arrives at the conviction that envy is ignorance; that imitation is suicide; that he must take himself for better, for worse, as his portion; that though the wide universe is full of good, no kernel of nourishing corn can come to him but through his toil bestowed on that plot of ground which is given to him to till. " -- Ralph Waldo Emerson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Thank you Pat! It is such a relief to not need the neb so constantly, to see my oxygen tank sitting quietly in the corner, my peak flow better than it's ever been. I have been drinking the water with lemon since you recommended it to another member a while back and I think that has helped a great deal. My asthma doc is thrilled at my weight loss. However, my primary care doc is concerned because I'm technically still on prednisone and he thinks that I ve lost too much. I've lost a total of 27 lbs now since Halloween. I don't think that's an unreasonable time frame at all, considering the drastic drop of my prednisone intake. He ordered bloodwork to check my thyroid (again) when I saw him yesterday for a check up. I think he's just trying to cover his bases. His concern is that the weight may come off too fast once I'm finally off of the pred for good. I'm still on a bunch of other meds, and I wish I could stop taking some of the ones that I know have never worked for me. I've been taking Singulair pretty much since it came out, and before that I was taking accolate. Neither of them ever put a dent in things, and one would think that since I actually became WORSE a few years after starting Singulair, that it just isn t doing any good. I know that my Advair helps, and I use pulmicort once a day in the morning, and I think that helps too. I know that my protonix hasn't worked for years because my reflux is worse, so I have to see a gastroenterologist. I'm also taking Zoloft and klonipin, and I have xanax as a back up for panic attacks which I rarely take. I take topamax for migraine prevention, and a few other PRN's for headaches (imitrex or vicodin depending on the migraine) and of course the albuterol, and xopenex are also always around. My headaches seem to be much fewer between the topomax and weaning off of the prednisone. I hope that is a trend that continues. The klonipin was given to me because the doctor determined that just having such severe asthma gave me anxiety, and that anxiety was causing a great deal of my attacks. Now if we can get the reflux under control (which he thinks is another trigger) I think I'll be in great shape and be able to kick some of the other meds. I don't like the migraine meds, I don't like the klonipin or the Xanax and I really think the singulair is useless. I know I need the Zoloft, at least for now. I've suffered from depression since childhood, and my doc is amazed that I've made it through the last 7 years without any anti-depressants. But I went to him about 4 months ago and told him I saw some of the bigger warning signs and admitted it was time before depression grabbed me full force. He agreed and here I am. I really am feeling better, I have a game plan and so far, things seem to be going smoothly and in the right direction. I so appreciate all of the support, information and heartfelt thoughts that pass through this group. I know I'm not a regular poster, but I'm a dedicated reader and this group has helped me more than you can imagine! Breathe easy! ~ -------Original Message------- From: MommaA Date: 01/21/06 10:12:49 Subject: Re: [ ] Checking in! , I'm thrilled for you! It just takes time. I can't tell you how many success stories I hear at work and here in the chat room. People tied to their oxygen tank, as well as 80 to 120mg prednisone, nebulizing atleast 6 times a day, rescue inhalers in between, Advair, Singulair, and Spiriva as well as Xanax are off most if not all of their meds. The ones I want everyone off of are Prednisone and Oxygen. I am so pleased for you. Keep up the good work! The prednisone pounds will come off for everyone. My suggestion is take the amount of pounds you weigh, divide it by 2, and drink that much water in ounces every day. It might take a while to build up to that much water, but believe me, it will help flush the body of those predni8sone pounds. Add a squirt of lemon juice in each glass if you wish. If anyone has kidney or heart problems they should ask their physician first about that much water intake. Everyone can be a success story like you . Thank you for sharing your experience! Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Hi Cam~ I am going in to have a Sympathectomy done....I am have a terrible time with my foot and leg again and we are hoping that this will work again. I will know better next week when the surgery will be done. I am consulting with another doctor to be sure there isn't something else that can be done first. It has been a bummer of a peroid of time so I have kind of kept to myself. How are things up there? Great, I hope!! Well, I better get off of here the kids are getting ready for bed.... Suziecammaltby <cammaltby@...> wrote: Hey Suzie....Good to hear from you. What are your surgery dates...I would like to get them on the calender. What exactly will you have done and who will do it and where will the surgery take place?You probably know this...but if you go to the site you can read all the back messages...they stay up indefinitely! /Glad you are back in the loop.Take Care, Cam What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Hi Bonnie~ How are you doing these days? Great, I hope!! The Sympathectomy is when certain portions of the sympathetic nerve trunk are either burned, cut or clamped. They did this when I had my revision surgery to tyr to get me relief for the RSD in my left foot and leg so that I could walk again. It worked wonders until the nerve refibered! I am losing mobility among other things again in a fairly rapid clip so we will try again. I will only be in the hospital for 2-3 days and am not quite sure of the recovery because I was alread in bad shape recovering from the revision surgery. Thank you for asking! I hope you have a wonderful day! Suzie Bonnie <bonnie@...> wrote: Suzie, What is a Sympathectomy? Whatever it is, I surely hope you find relief from it. Bonnie Re: [ ] Re: Checking in! Hi Cam~ I am going in to have a Sympathectomy done....I am have a terrible time with my foot and leg again and we are hoping that this will work again. I will know better next week when the surgery will be done. I am consulting with another doctor to be sure there isn't something else that can be done first. It has been a bummer of a peroid of time so I have kind of kept to myself. How are things up there? Great, I hope!! Well, I better get off of here the kids are getting ready for bed.... Suziecammaltby <cammaltby@...> wrote: Hey Suzie....Good to hear from you. What are your surgery dates...I would like to get them on the calender. What exactly will you have done and who will do it and where will the surgery take place?You probably know this...but if you go to the site you can read all the back messages...they stay up indefinitely! /Glad you are back in the loop.Take Care, Cam What are the most popular cars? Find out at Autos Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Suzie, When I was in that sort of pain, I was given a cryogenic nerve block, which lasted months or even a few years, and was done under fluoroscopy as a day procedure. I walked out of the place feeling better. Of course, I had been given something to help me relax, so I did not drive home! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Suzie, Yes the cryogenic treatment was done for pain from my scoliosis. The doctor who did it for me has moved to CA. I think that was her original home. Her name is Hillary Faucett, M.D., and she is an anesthesiologist. That's about all I can tell you about her. The treatment gave me relief from intractable pain in my left rib cage. I had been trying to push on it, was literally throwing myself at the kitchen counters, etc., in the hope of relieving it. It went on and on, until she came up with this treatment, which was done under fluoroscopy. I believe I described the whole treatment itself in a previous post. If you missed it, let me know. Sincerely, Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi Carole, I have not heard of this....what did you have it done for...your back? Suziescolioly2@... wrote: Suzie, When I was in that sort of pain, I was given a cryogenic nerve block, which lasted months or even a few years, and was done under fluoroscopy as a day procedure. I walked out of the place feeling better. Of course, I had been given something to help me relax, so I did not drive home! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Carole, I am sorry I must have missed it! My Sympathectomy isn't for my back but for my left foot and leg that have suffered nerve damage due to RSD. Iscolioly2@... wrote: Suzie, Yes the cryogenic treatment was done for pain from my scoliosis. The doctor who did it for me has moved to CA. I think that was her original home. Her name is Hillary Faucett, M.D., and she is an anesthesiologist. That's about all I can tell you about her. The treatment gave me relief from intractable pain in my left rib cage. I had been trying to push on it, was literally throwing myself at the kitchen counters, etc., in the hope of relieving it. It went on and on, until she came up with this treatment, which was done under fluoroscopy. I believe I described the whole treatment itself in a previous post. If you missed it, let me know. Sincerely, Carole Brings words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
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