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Medical Forum / Diseases and Disorders / Arthritis / October 2007Update - long - enter at your own risk! LOL!!!
Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Hi Donna,,,,, Someone once told me that my RA is not what will kill me but it may cause something else to do the job. You are in a D** if you do and D**ed if you don't type deal. I can only say what I would do in this case for myself,,,,,,,stop the dmards and start prednisone and maybe Naprosyn until your immune system comes back. When your immune system comes back, start DMARDs. Pred. and Nap. both are hard on your insides and must be taken with food and atleast 2 hours before bedtime. There are so many people here that care about you and have you in our thoughts and prayers which means that this must be updated. Harv Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Donna, I'm so sorry you are going through more problems with your health. It hasn't been at all good for you lately, but hopefully you will turn a corner soon. I tend to think your PCP has the right idea to go along with it and see what happens. I hope the insurance will end up taking care of the cost of the infusions. I wish someone would tell us the ideal insurance policy that would take care of all of our meds and treatments so we wouldn't have so much stress about money. You will remain in my daily prayers. Ann Thanks, Harv, I really appreciate your prayers and good wishes. Unfortunately, stopping the dmards is really not an option as my RA tends to be rather agressive in attacking my organs and I just can't afford to have anything else with the health come up right now. The dmards have to stay, and the doctors are working with each other to try to use the best possible dmards for my situation. The immune stuff has been going on for a way long time before the RA was ever even diagnosed, so it is just a matter of trying to get that component of it under better control. Besides, I'm really not supposed to do nsaids and the pred causes just as much problem, if not more, than the dmards do. Hope you are doing well and doing ok these days on your regimen! Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. > Thanks, Harv, I really appreciate your prayers and good wishes. > [quoted text clipped - 11 lines] > Hugs, > Donna Ohhh, I wish I knew more. I do not understand how your immune system could be so down that your lungs, sinuses,ect,ect. are in trouble because of a lack of immune system to take care of them,,,,, but your RA marches on into a uncontrolled state which is our immune system turning on ourselves. If you ever get one of your doctors to explain that,,,, please tell us. Harv Thanks, Ann! I so appreciate your support and prayers, them mean a lot. Thanks also for the encouragement. I will get through this all. Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. Donna, the important thing is for you to do what you can to help yourself get rid of the problem. If this treatment will work, I'll be praying that the financial part will fall into place and you can get started right away. You have had too many people's share of health problems; it is past time for them to go away so you can really feel good for a change. That will also be in my prayers. Please don't be concerned about not supporting others; we just want you to do what's best for you. Gwen Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Awwwww, thanks, Gwen! Keep them prayers coming, they are soooooo appreciated and help carry me through all of the frustrations. . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. Sorry I haven't gotten to the newsgroups for a few days now. You have been in all our prayers. I had a portacath put in for treatment of cryptococcal sinusitis - six weeks of daily IVs for two hours. The only bad part was after the portacath was put in and the home nurse came out to access it. The only solution that time is to grit your teeth and bear it. It didn't take long but was very painful. After that it was so easy to do the IVs. My cat loved to watch the few bubbles go up the tube! He did learn not to touch the tubes, although I would see his paw twitch just a bit! LOL Hange in there Donna, we are all thinking of you. Loujean Navy Take out the FISH to email me. Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Loujean, Was the port really painful to access each and every time, or just when you first got it put in and until it healed? Even if it is rather painful all the time, I guess it is better than getting stuck over and over and over again, which is what usually happens even when I am just getting blood drawn. I have horrible access. Appreciate your sharing your experiences with me, they really help. Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. > Loujean, > [quoted text clipped - 5 lines] > > Appreciate your sharing your experiences with me, they really help. Donna, My mom had Emla cream (or something similar) to put on the skin over her port for when she had chemo or blood draws. It's an anesthetic cream, like they use for putting in sutures. She put it on an hour before there was to be an infusion or draw and covered it with gauze. Not sure whether that's just a chemo thing, the procedure at the center she went to, or what. But it certainly made it more comfortable. Hoping these infusions help!!!! Adelle OH, thanks, Adelle, for that suggestion. I really appreciate it and will ask my doctor about that. How are you and your sister doing? Thinking of you and your family!!! Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. >My mom had Emla cream (or something similar) to put on the skin over her >port for when she had chemo or blood draws. It's an anesthetic cream, like >they use for putting in sutures. She put it on an hour before there was to >be an infusion or draw and covered it with gauze. Not sure whether that's >just a chemo thing, the procedure at the center she went to, or what. But it >certainly made it more comfortable. If you do use Emla cream I suggest covering it with plastic wrap so it stays moist, the gauze would just absorb it and it wouldn't work as well. We used to do that with some of our neonates before starting intracaths (I.V.s) and we used plastic wrap to cover them. Joan They only have to access it once. Then they put in a tube with a port on the end. After I was through using it, they removed in under anesthesia. It wasn't bad healing, if I remember. I agree than a portacath is much better than getting stuck every day. I even had one vein collapse - boy, did that hurt - until I had the portacath put in. The visiting nurse would use the portacath to withdraw the weekly blood samples for testing for liver damage, etc, from the medication. It all turned out well at the end. Unfortunately, there isn't an end with arthritis. I think I was very fortunate as they got a medication that worked before I got too bad. It's still there, but at least it is in check for right now.  SignatureNavy Take out the FISH to email me. > > Loujean, [quoted text clipped - 18 lines] > > 2. J.K.M.A. > My cat loved to watch the few bubbles go up the tube! He did learn not to > touch the tubes, although I would see his paw twitch just a bit! LOL heehee, I can just picture that! That would so be Puddin' if one of us were in the same situation. It's been really intersting to have Puddin' hover, but having to take care to avoid tender areas during this latest recovery. They really are interesting animals and I can't believe how we former dog-only people have been completely won over by this one cat! SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Nann, You know, when I first read the link I posted, which is basically the same thing that the specialist gave me in a printed out format, I immediately thought of you! In fact, after reading about the enlarged/inflammed lymph nodes and such in the abdominal cavity, with the occassional bouts of nausea and such, I almost came home and called you. A number of the symptoms really seem to fit what you have been dealing with, and one can't help but wonder if this is what you are dealing with and the doctors are missing the diagnosis. It's definitely worth checking into. Perhaps even worth printing out the link and taking it with you the next time you see your doctors!!! Sure praying that they can get things sorted out soon for you and get you feeling back to some semblance of normal!!! Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. I recall one of the tests my RD ran last spring was to check my body's response to the pneumonia vaccine and the site mentioned low antibodies in response to vacines as one marker of CVID. I wonder if that's where he was going. I don't recall what the results were though. I'll find out more on my next visit, when I'll feel better than I did last time. As much as I hate you going through what you are, I'll be grateful if it helps us pinpoint what's up with me! SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare > Nann, > [quoted text clipped - 23 lines] > > 2. J.K.M.A. Nann, Wouldn't that be something if you end up going in there and asking them to check a few things and arrive at your own diagnosis? Mine journey started with them drawing the IGG, IGA, IGM, and IGE levels. When 3 out of the 4 showed quite low, that is when they really started investigating. Would love it any of this could help them get things figured out for you! BTW, what really seemed to tip me over the edge, especially infection wise, was when I was on the enbrel. The enbrel worked wonders for me with my RA, but really set me off in a downward spiral with the numbers and severity of infections. . . . Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. I have to admit that the enbrel tipped me too for infections and I have followed this very very closely! I finish 3 months of antibiotics next week for the constant bladder infections. If they occur after I am going to scream! One after another since enbrel. The sinus infections are down a bit - I never ever had those before enbrel and while on enbrel they were constant. Always wondered if the infections and the stopping and starting etc. was part of the whole reaction thing I had. Will never know what happened there. I do wish Diane W was still here too to discuss this. The enbrel was sort of off label for her as she had the MS too but she got infection after infection on it and was on IVIG. I need to go back in the archives and see what it was they decided she had - I know her son was being genetically tested to see if he had it too and he really didn't want to know (that age - you know the 19 year old thing - no symptoms though). I was going to add Donna - I am sure the rituxan is finally starting to work. Two incredible days without huge pain and I have been doing so much running around. Because my wrists have been painful I have not been even using my cane as much and have not used my scooter (even though a couple of times I could have used it). Even with the moving thing = well no painkillers. So I think it has started to kick in. Would be so nice. This is 5 months. Wasn't looking for it so will see - the rd figured it would take 6 - 7 months since I am so "different". Oh and bonus the neurological pain has been reduced. Real bonus and they have reported that in some articles on the internet. So will see. We are talking reduced by the way - pain level from 8 - 9 a day out of 10 last week to 7 this week. Fingers crossed. I will take 7 on a steady basis. Do I hear 6 - sold to the highest bidder! Nann - it would be interesting to know if they recommend IVIG. The reading are interesting on this. Kelly Kelly, am so excited to hear that the rituxan is starting to kick in a bit. If you're like me, it was a very gradual slow process of kicking in and it did take a good 5-7 months before it felt like it really kicked in completely. I still don't think it is as good as the enbrel for me and my RA, but the enbrel just caused way way too many problems. Might behoove you to have your immunoglobulin levels checked too. Maybe you and Nann both have a component of this cvid. I'm beginning to wonder if more people (especially with RA) might not have varying degrees of cvid and not even be aware of it. Just takes some blood work to check into it, so may be worth checking out. Am also soooo excited for you that you are moving into the new house!!! Wooooohoooooooo!!! Can't wait to see pics! Pace yourself, though, and please, please don't overdo!!! Hugs, Donna . . . . 1. ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2. J.K.M.A. Kelly, I sure hope you are over that bladder infection stuff. Oh man that is a long time to be battleing it. I don't blame you for screaming if it reoccurs. I sure hope your rituxan is kicking in finally. I have my fingers crossed and that hurts. ;-) I sure hope it is helping with the neurological stuff too. That would be a bonus. ;-) SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. >I have to admit that the enbrel tipped me too for infections and I have >followed this very very closely! I finish 3 months of antibiotics next [quoted text clipped - 30 lines] > > Kelly Hang in there, Sweetie. Sounds as though your doctors are on it. We love ya!! DeeTee Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Donna, You are always in my prayers and thoughts. I feel for you with all that you are going thru. I wish there was something that could be done and fixed quickly to make you so much better. I hope the infusions work quickly so that your immune system starts working again. I imagine a port would be better than having them prick you all the time. I hope you get thru the infusions ok without the possibilities you listed below. Yes, thank God for wonderful drs. that are willing to talk with you and be honest and encouraging. I feel for you with not being able to get the rituxan infusion. I sure hope this all works for you and that the infections stay away for good now. I hope the yeast beastie leaves quickly too. Donna, we do understand when you are not up to being here and being supportive, now get that thought out of your head. We can't be up and supportive all the time, if we were we wouldn't be here now would we. ;-) Do not disappear from the group for this at all. Yeah it is ok to disappear if you don't feel up to it, but let us know why. We do worry about you. We care about and love you very much. You take care and I hope to hear soon that you are doing much better. But if you can't tell us that for awhile , then tell us how you are doing. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. Hi Everyone! Sorry it's been so long, but figured it's about time I updated everyone on what's been going on! Also wanted to take the time to thank all of you for your incredible support and prayers---they have meant the world and have helped me get through what has been a bit of a trying and stressful time. As many of you know, during my last hospital stay, my lung doctor started doing a bit of testing to try to figure out why I have been getting so sick so often. He just didn't feel like I should be getting so sick so often and it has become harder and harder to clear those infections. Thus his looking into things a bit further. Turns out, that I have almost no immune system to speak of. Besides retesting my IGg, IGa, and IGm levels, the specialist I saw tested for T cells, B cells, antibodies to several things including a few different types of pneumonia. One of the types of pneumonia (s. pneumonia has like 15 subtypes and on every single one of them, the normal range should be > 1.0 and my levels were < 0.2 --- yikes! On something else that was tested, the levels were supposed to be 100-560 and my level was less than 5! So, just this past week, I was given the official diagnosis of CVID (common variable immuno- deficiency). The best way to treat this condition is by getting regular monthly infusions of IVIG for the rest of your life. The specialist wants to get these infusions started as soon as possible, so am scheduled to start the infusions at the end of october. Of course, this all hinges on what the financial coverage is for the infusions. Since this will be something that I have to deal with for the rest of my life, I am still waiting to hear about financial coverage/help, especially long term, for all of this. The infusions would be two days each month. Am also scheduled to get a port put in my chest wall on thursday for these treatments. Oh joy! Think I am way way past the 3 disease limit these days! LOL!!! It's all a bit overwhelming to me and though the infusions of the IVIG are supposed to help me in the long run get less infections and the infections I do get should be easier to treat, the infusions are not without their own set of risks, including the possibility of making my rheumatoid worse, because it is made from components of blood products, the possibility of getting hepatitis C or some other blood born illness, etc. Not to mention the side effects (chest pains/tightness, nausea, headache, body/joint pain, etc) of each set of infusions. Don't know whether to be happy or not at this point. My pcp said, let's just take it one step at a time and see how it all works out. He said he does have some concerns himself, but also said I am the first patient he has ever had that has been diagnosed with this problem, so isn't all that familiar with the condition or the treatment. LOL, told him I'm sure I have been his first for several things!!! He just laughed!!! Thank God for wonderful doctors who are so willing to talk all this through with me and who are honest yet encouraging!!! I'm still kind of trying to process it all, but also trying not to get too worked up about any of it until I know that this treatment is even going to be an option for me financially. The specialist did say that after looking at my bloodwork, that she thinks this is something that has been going on for a very very long time with me and that when I was diagnosed with the RA and put on some of the heavier dmards, that that just added to the problems. This CVID may have even been something that was inherited. They've already made sure I got my flu shot to try to protect me as best as possible. Am due for my rituxan infusion as well, but the RD has pushed that infusion back until I can get the IVIG infusions. He said that really needed to take first priority. Grrrrr-----I want my rituxan as my RA is screaming that it is more than past due! Just got over another infection that hit just 3 weeks after my last hospital stay in sept. As has been the case lately, it took several rounds of antibiotics to clear it up and in the mean time flared my breathing issues up. My pcp wanted to admit me again, but I told him I'd like to try to manage it at home. As luck would have it, he was on call that weekend, so was willing to let me go home with the understanding that if things got any worse at all, that I was to head straight for the hospital and let him know. Ended up I was able to avoid being hospitalized, but it took a long long time to clear it all up and my poor pcp was literally seeing me in his office about every other day or so. Did finally clear it though and then ended up with a pretty nasty yeast infection which I am just getting cleared up now. Whew, what a ride it has been and I'm afraid I have been so sick and so self absorbed, that I just didn't have it in me to be very supportive to anyone else and didn't feel like anyone else needed to listen to my whining, thus my disappearance from the group for awhile! Kelly E. has been such an amazing angel checking up on me and she did forward to me all of your prayers, well wishes, and even the little lectures! LOL---God bless you all for your care and concern and for taking the time to tell me like it is!!! I know I needed to hear some of that and of course, the prayers are so precious and are truly what carry me through at times!!! I hope each of you knows how very precious you all are to me!!! Am working at getting my act back together and hopefully can rejoin the gang a little more regularly sometime soon! Appreciate all the prayers thus far, and appreciate the continued prayers that this will all work out in what ever way is best!!! Hugs and prayers to all of you for pain free healthier days!!! Donna G . . PS.....just a little light, easy, reading material in case any of you are interested: Immune Disease | Types of Immune Disease Address:http://www.immunedisease.com/US/patients/IDF/cvid.html Hi Donna, Yiu are in my thoughts and prayers. I hate hearing that you have to deal with another serious problem. I wonder how this immune disorder does affect your RA. It will be interesting to see if there is any change once your immunity is boosted. You can see how the DMARDs would act to further limit your immunity and I would think that some DMARDs would automatically be out. Since many of the new DMARDs are targeted toward specific cells it may not be as bad though. We will have to see what the docs say on that matter. I am not sure how rituxan works, but I hope that you can continue if it helps the RA. Please remember we are here for you and never be afraid that you are whining. I bet that thought has not ever crossed anyone's mind. Rose @}->-- Being educated means that rather than fearing the unknown, one seeks to understand it. Please remove "Ima" to reply. > So, just this past week, I was given the official diagnosis of > CVID (common variable immuno- deficiency). ((((((((((((((((((((((Donna)))))))))))))))))))))))) I read the link you gave us. I wonder if some of the damage to your joints and your internal organs that's been attributed to your RA might actually be the result of the CVID. I'm crossing my fingers and saying my prayers for you somehow getting coverage for the infusions and treatment showing this will cover more of your problems than expected! Hopefully you won't get the side effects and they will cover any pains you suffer through this. I forget if this incredible rain we've been having up here is stretching into the southern part of the state. I'm hoping it isn't, or that it's cool enough for you to turn on the heat and cook out some of the humidity. You truly don't need that playing havoc with your lungs right now and messing up the scheduled first infusion. Reading about CVID leaves me even more curious about the results of my repeat IGG to see if it's recovered post-Enbrel and about the testing to check my response to the pneumonia vaccine last spring. Don't remember ever hearing about hte latter, though it's been hard to keep track. Depending on whether the hypogammaglobulinemia has resolved without the Enbrel, a mild version of this may have been part of what's been going on with me. Time for more inquiries at my next appointment. I don't want to reach the point of competing with you on severity of this condition. > Thank God for wonderful doctors who are so willing to talk all this > through with me and who are honest yet encouraging!!! that is a real blessing, indeed. Even more so with them willing to discuss things with each other and work out the best way to treat you. It is so hard to take care of yourself when you feel like crap and it's great that you don't have to "manage" your doctors on ops of things. (heh, my *doctors* are great, but I've really been having to "manage" my surgeon's nurse. She's simply clueless and seems to see me as even more clueless. the doc and I are able to talk straight to each other, though.) > Whew, what a ride it has been and I'm afraid I have been so sick and so > self absorbed, that I just didn't have it in me to be very supportive to > anyone else and didn't feel like anyone else needed to listen to my > whining, thus my disappearance from the group for awhile! you know that we don't mind you needing to focus on yourself for a while and we more than understand about the need to work on your own health and even to whine. But at the same time, I know all of us who are accustomed to coping with stuff understand wanting *not* to whine and wanting *not* to be so focused on yourself. When we are really sick, we so crave the ability to once again be the people when are when we are less sick (realizing that most of us here are never really *well*). So, do what you have to do, but stay in touch with someone so we know what's going on with you. You know we care and we worry. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Hi, Donna. It's just wonderful that your poor beat up immune system is going to get an assist. I'm sure hoping and praying this is going to make a world of difference for you. I'm probably going to have a port soon myself. Not for the same reason, though. They are having a really hard time getting stuff OUT of me! I love being backwards. I guess that means I should have a starboard put in... (The '...' means I technically did NOT end the previous sentence with a preposition.) Happy to see you again, Denise > Hi Everyone! > [quoted text clipped - 10 lines] > so sick so often and it has become harder and harder to clear those > infections. Thus his looking into things a bit further. |
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