Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 I am so glad that you took that huge stpe and started making a good life for yourself! 40 pounds by the wedding...that is certainly do-able!!!! What a great goal to look forward to. Joya --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.303 / Virus Database: 164 - Release Date: 11/24/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2004 Report Share Posted November 5, 2004 Thanks so much Cathy. My daughter is 22 and has autonomic nervous system failure due to a dpt shot reaction as a babt. In a message dated 11/5/2004 12:10:50 PM Eastern Standard Time, RSD-CRPSofAmerica writes: From: fishthatsmiles@...Subject: Re: My apologies karenthere is nothing toapoligize for. you have a lot on your plate rightnow. how old s your daughter. hope you and her get some relief soon.you have each ither to hold onto. do not let family hurt you. just sayto daughter. hon it is you and me against the world and we will not letthe b------d win. we are stronger than it so remember this. writewhenever you can. i am here for you;l love ya cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Lin it would actually be very interesting if we all had T-cells that were damaged...it may be a link that we all never thought about including drs...Hugs..Ginny wrote: Ginny, I think my doctor tested for that, I will have to ask him about this and if my t cells were strange. He ran every test he could think of trying to find out what was wrong, before the bone scan actually showed where the RSD sites are. My next appt is on December 2nd. Now the hard part will be trying to remember, which can be a very interesting prospect. take care, Lin Cathy, I know that with auto-immune disorders the T-cell gets damaged alot...I know my blood tests have shown that I have damaged and mutated T-cells. I wonder how many know they have this because it's not usally tested for. Hope you have a great day..Hugs..Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Hi Cathy, I am glad to hear that Jennell is doing better. We all just got back from vacation last week, which did very well. Though he just got out of the hospital today, and he is doing much better. Within 4 weeks he will be completely off the prednisone (yeaaaa). His last 24 urine is still 4+ but after this last tx of iv solumedrol, I am hoping his next 24hr ua will be that much better. My question to you on the omacor fish oil, do you know if it matters which brand you use? I started him on fish oil 2 weeks ago myself. Thanks, Cathy Waelty wrote:Hi Pierre and everyone else, I hope all is still going well with you Pierre. We just got back from our appointment with Jennell's Nephrologist. Some good news and some bad. This appointment was a follow up to our initial appointment 2 weeks ago. This was to discuss " the plan " for Jennell's health care and options for her HSP and IgaN care. Wow, lots to say here so I will appologize for this long email early. Hmmmmm. where do I start; The 24 hour urine that we did last week, the results can back and the doc said either a miracle has happened or someone typed in a result wrong with the numbers because it showed everything was fine, therefore we have to do another 24 hour urine to be sure. Jennell's urine is black in color, she gave him a sample and because of the color of her urine he believes someone did in fact make a mistake when typing in the report on her 24 hr urine results. He said because Jennell's last blood work reports have been showing some improvement with her kidney function, but he did confirm that she is becoming anemic so we have to watch that carefully he also said that may be because of the cytoxan that she has been taking making the numbers not really true as far as the anemia. He did more blood work today and I hope to have those answers on Monday. " The Plan " is this right now, he is taking her off the Cytoxan immediately, which I am very pleased about, he said his collegues and himself do not feel that it is a drug Jennell should be on right now because all the data that has been collected so far on it has not confirmed that it does indeed help with IgaN. They do not feel that the data supports it enough to have her on it because of the long term side effects so he has discontinued it as of today. Her prednisone dosage now of 60 mgs a day we are to start tappering down after 1 week of being off the Cytoxan, he wants me to start to tapper off the prednisone by 5 mgs a week and while doing this he will watch her blood and urine levels. He is also taking her off the Bactin anti-biotic that she takes 3 times a week after she has been off the cytoxan for a week. He also wants me to have her take Omacor (pure fish oil) and take her off the Omgega 3 and replace it with the Omacor, he said it has just been approved here in the USA by the FDA but guess what, I can't find it anywhere at any pharmacy in my area. So, I called Reliant Pharmacuticals in New Jersey, they are the company that has received the approval to distribute it but they said it will not be ready to distribute until the 4th quarter this year. Pierre, I am told that it can be obtained in Canada, is this true? If so how can I get it for Jennell? We are willing to drive there to get it if necessary, we do have a prescription for it. We are scheduled to go back and see him in one month to re-evaluate Jennell. He told Jennell that if she feels anything differant going on he needs to know about it and she promised her that she would. I guess I'm not sure what to expect from all of these changes, but she does seem to be leveling out according to the doctor and I guess this is the part that where go into a " test and see trial " as to how she will react to the change in medication. All and all she is feeling pretty good, she has only gained 2 pounds which is a surprise with the Prednisone dosage that she has been on now for 5 weeks. Everyone is surprised even the doctor that she is not swelling up and gaining weight. Well I am sure I have burnt everyones eyes out here having to read this long long email, and I am sorry for that. All opinions are welcome on this information. Pierre, if you know where I can get the Omacor, please let me know. Can I get it if I drive to Canada? Is a prescription needed there or is it an over the counter item? Thanks all God Bless Cathy......Jennell's Mom To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Welcome back , I hope all of you enjoyed your vacation. I am sorry to hear that had to be in the hospital again. What wonderful news that he will be off prednisone soon. Regarding the Omacor, it is a prescription for pure fish oil. It only comes that way from what I am told. But, it isn't available here in the Us yet, it was just approved. In the mean time we are using Nature Made maximum strength Omega 3, 1200 mgs capsules, 9 a day. I am told that you have to really watch for the amount in each capsule, some are cheaper than others, but you need to take more capsules to get the amount your doc wants him to take. I think you just have to try to find one that is as pure as it can be and all natural ingredients. I was giving her Omega 3 / Omega 6 capsules but after seeing the nutrionalist she told me to get just Omega 3 capsules. This was a response that I got from this site from someone else I take 10 capsules daily (based on the Mayo Clinic study) and I get them at Costco (Kirkland brand) It is a good value for the quantity plus the added benefit of knowing that they got a stamp of approval by Consumer Labs and Consumer Report magazine for content and absence of pollutants. Be wary of supplements because they are not regulated and some fish oils do not have what they claim on the label. I found the Nature Made Brand that Jennell is taking at BJ's Wholesale, $9.99 per bottle of 200 capsules. Take care and welcome back Cathy......Jennell's Mom _____ From: iga-nephropathy [mailto:iga-nephropathy ] On Behalf Of susan capo Sent: Friday, April 29, 2005 6:37 PM To: iga-nephropathy Subject: Re: Cathy Hi Cathy, I am glad to hear that Jennell is doing better. We all just got back from vacation last week, which did very well. Though he just got out of the hospital today, and he is doing much better. Within 4 weeks he will be completely off the prednisone (yeaaaa). His last 24 urine is still 4+ but after this last tx of iv solumedrol, I am hoping his next 24hr ua will be that much better. My question to you on the omacor fish oil, do you know if it matters which brand you use? I started him on fish oil 2 weeks ago myself. Thanks, Cathy Waelty wrote:Hi Pierre and everyone else, I hope all is still going well with you Pierre. We just got back from our appointment with Jennell's Nephrologist. Some good news and some bad. This appointment was a follow up to our initial appointment 2 weeks ago. This was to discuss " the plan " for Jennell's health care and options for her HSP and IgaN care. Wow, lots to say here so I will appologize for this long email early. Hmmmmm. where do I start; The 24 hour urine that we did last week, the results can back and the doc said either a miracle has happened or someone typed in a result wrong with the numbers because it showed everything was fine, therefore we have to do another 24 hour urine to be sure. Jennell's urine is black in color, she gave him a sample and because of the color of her urine he believes someone did in fact make a mistake when typing in the report on her 24 hr urine results. He said because Jennell's last blood work reports have been showing some improvement with her kidney function, but he did confirm that she is becoming anemic so we have to watch that carefully he also said that may be because of the cytoxan that she has been taking making the numbers not really true as far as the anemia. He did more blood work today and I hope to have those answers on Monday. " The Plan " is this right now, he is taking her off the Cytoxan immediately, which I am very pleased about, he said his collegues and himself do not feel that it is a drug Jennell should be on right now because all the data that has been collected so far on it has not confirmed that it does indeed help with IgaN. They do not feel that the data supports it enough to have her on it because of the long term side effects so he has discontinued it as of today. Her prednisone dosage now of 60 mgs a day we are to start tappering down after 1 week of being off the Cytoxan, he wants me to start to tapper off the prednisone by 5 mgs a week and while doing this he will watch her blood and urine levels. He is also taking her off the Bactin anti-biotic that she takes 3 times a week after she has been off the cytoxan for a week. He also wants me to have her take Omacor (pure fish oil) and take her off the Omgega 3 and replace it with the Omacor, he said it has just been approved here in the USA by the FDA but guess what, I can't find it anywhere at any pharmacy in my area. So, I called Reliant Pharmacuticals in New Jersey, they are the company that has received the approval to distribute it but they said it will not be ready to distribute until the 4th quarter this year. Pierre, I am told that it can be obtained in Canada, is this true? If so how can I get it for Jennell? We are willing to drive there to get it if necessary, we do have a prescription for it. We are scheduled to go back and see him in one month to re-evaluate Jennell. He told Jennell that if she feels anything differant going on he needs to know about it and she promised her that she would. I guess I'm not sure what to expect from all of these changes, but she does seem to be leveling out according to the doctor and I guess this is the part that where go into a " test and see trial " as to how she will react to the change in medication. All and all she is feeling pretty good, she has only gained 2 pounds which is a surprise with the Prednisone dosage that she has been on now for 5 weeks. Everyone is surprised even the doctor that she is not swelling up and gaining weight. Well I am sure I have burnt everyones eyes out here having to read this long long email, and I am sorry for that. All opinions are welcome on this information. Pierre, if you know where I can get the Omacor, please let me know. Can I get it if I drive to Canada? Is a prescription needed there or is it an over the counter item? Thanks all God Bless Cathy......Jennell's Mom To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2005 Report Share Posted April 30, 2005 Hi Cathy, Thanks for the info, wow! that sounds like a lot of capsules to take daily. I actually started him on nature made omega 3 1000mg.once daily. Cathy Waelty wrote:Welcome back , I hope all of you enjoyed your vacation. I am sorry to hear that had to be in the hospital again. What wonderful news that he will be off prednisone soon. Regarding the Omacor, it is a prescription for pure fish oil. It only comes that way from what I am told. But, it isn't available here in the Us yet, it was just approved. In the mean time we are using Nature Made maximum strength Omega 3, 1200 mgs capsules, 9 a day. I am told that you have to really watch for the amount in each capsule, some are cheaper than others, but you need to take more capsules to get the amount your doc wants him to take. I think you just have to try to find one that is as pure as it can be and all natural ingredients. I was giving her Omega 3 / Omega 6 capsules but after seeing the nutrionalist she told me to get just Omega 3 capsules. This was a response that I got from this site from someone else I take 10 capsules daily (based on the Mayo Clinic study) and I get them at Costco (Kirkland brand) It is a good value for the quantity plus the added benefit of knowing that they got a stamp of approval by Consumer Labs and Consumer Report magazine for content and absence of pollutants. Be wary of supplements because they are not regulated and some fish oils do not have what they claim on the label. I found the Nature Made Brand that Jennell is taking at BJ's Wholesale, $9.99 per bottle of 200 capsules. Take care and welcome back Cathy......Jennell's Mom _____ From: iga-nephropathy [mailto:iga-nephropathy ] On Behalf Of susan capo Sent: Friday, April 29, 2005 6:37 PM To: iga-nephropathy Subject: Re: Cathy Hi Cathy, I am glad to hear that Jennell is doing better. We all just got back from vacation last week, which did very well. Though he just got out of the hospital today, and he is doing much better. Within 4 weeks he will be completely off the prednisone (yeaaaa). His last 24 urine is still 4+ but after this last tx of iv solumedrol, I am hoping his next 24hr ua will be that much better. My question to you on the omacor fish oil, do you know if it matters which brand you use? I started him on fish oil 2 weeks ago myself. Thanks, Cathy Waelty wrote:Hi Pierre and everyone else, I hope all is still going well with you Pierre. We just got back from our appointment with Jennell's Nephrologist. Some good news and some bad. This appointment was a follow up to our initial appointment 2 weeks ago. This was to discuss " the plan " for Jennell's health care and options for her HSP and IgaN care. Wow, lots to say here so I will appologize for this long email early. Hmmmmm. where do I start; The 24 hour urine that we did last week, the results can back and the doc said either a miracle has happened or someone typed in a result wrong with the numbers because it showed everything was fine, therefore we have to do another 24 hour urine to be sure. Jennell's urine is black in color, she gave him a sample and because of the color of her urine he believes someone did in fact make a mistake when typing in the report on her 24 hr urine results. He said because Jennell's last blood work reports have been showing some improvement with her kidney function, but he did confirm that she is becoming anemic so we have to watch that carefully he also said that may be because of the cytoxan that she has been taking making the numbers not really true as far as the anemia. He did more blood work today and I hope to have those answers on Monday. " The Plan " is this right now, he is taking her off the Cytoxan immediately, which I am very pleased about, he said his collegues and himself do not feel that it is a drug Jennell should be on right now because all the data that has been collected so far on it has not confirmed that it does indeed help with IgaN. They do not feel that the data supports it enough to have her on it because of the long term side effects so he has discontinued it as of today. Her prednisone dosage now of 60 mgs a day we are to start tappering down after 1 week of being off the Cytoxan, he wants me to start to tapper off the prednisone by 5 mgs a week and while doing this he will watch her blood and urine levels. He is also taking her off the Bactin anti-biotic that she takes 3 times a week after she has been off the cytoxan for a week. He also wants me to have her take Omacor (pure fish oil) and take her off the Omgega 3 and replace it with the Omacor, he said it has just been approved here in the USA by the FDA but guess what, I can't find it anywhere at any pharmacy in my area. So, I called Reliant Pharmacuticals in New Jersey, they are the company that has received the approval to distribute it but they said it will not be ready to distribute until the 4th quarter this year. Pierre, I am told that it can be obtained in Canada, is this true? If so how can I get it for Jennell? We are willing to drive there to get it if necessary, we do have a prescription for it. We are scheduled to go back and see him in one month to re-evaluate Jennell. He told Jennell that if she feels anything differant going on he needs to know about it and she promised her that she would. I guess I'm not sure what to expect from all of these changes, but she does seem to be leveling out according to the doctor and I guess this is the part that where go into a " test and see trial " as to how she will react to the change in medication. All and all she is feeling pretty good, she has only gained 2 pounds which is a surprise with the Prednisone dosage that she has been on now for 5 weeks. Everyone is surprised even the doctor that she is not swelling up and gaining weight. Well I am sure I have burnt everyones eyes out here having to read this long long email, and I am sorry for that. All opinions are welcome on this information. Pierre, if you know where I can get the Omacor, please let me know. Can I get it if I drive to Canada? Is a prescription needed there or is it an over the counter item? Thanks all God Bless Cathy......Jennell's Mom To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you --------------------------------- Quote Link to comment Share on other sites More sharing options...
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