Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Dear all, It has been a while since I have had the time to read the messages and it's undoable to read them all I'm affraid. Hope everyone is doing ok. Just a short update on my current Igan " situation " . After 7 years I started taking ace inhibitors (since 2 weeks). 10 mg/day of Enalapril. This because I still had 6 g/24 hours of protein in my urine. Just as in december. So it didn't get worse but is ofcourse far to high. My bp has always been rather low and is certainly low now. Sometimes even below 100/60. (I monitored my bp for the past 2 weeks.) Does anyone know how much time it takes to get used to this kind of medication and what should be an optimal bp? Sometimes I feel quite dizzy and see everything black as I stand up (has to do with low bp no doubt). Besides I'm more often really tired. Last weekend was really terrible. I had to go to bed even in the afternoon because I couldn't get one foot before the other. And what about a polse of 51 to 62? Is that normal? Really don't know much about these things I'm affraid ;-) Doortje Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Crystal, I didn't find anything on that in the information I got with the medication. I assume it has in my case to do with my bp being low, but don't know if that is really the cause. bye, Doortje > So can any one tell me is that a side effect of ENALAPRIL to make people feel > tired/??????,,,because april takes that med as well,,and she stays so sleepy > all the time,,,,,,CRYSTAL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi Doortje, I am sorry the past two weeks have been so hard on you. Your BP is low. Amy has been having problems with dizziness with her low BP lately too. Please do call your doctor and let him know how bad your dizziness is OK? Maybe your Neph could start you on 5 mg instead. My pulse regularly runs in the 50s or low 60s, so that is a normal for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi Doortje, I am sorry the past two weeks have been so hard on you. Your BP is low. Amy has been having problems with dizziness with her low BP lately too. Please do call your doctor and let him know how bad your dizziness is OK? Maybe your Neph could start you on 5 mg instead. My pulse regularly runs in the 50s or low 60s, so that is a normal for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2004 Report Share Posted June 16, 2004 Hi Doortje, I am sorry the past two weeks have been so hard on you. Your BP is low. Amy has been having problems with dizziness with her low BP lately too. Please do call your doctor and let him know how bad your dizziness is OK? Maybe your Neph could start you on 5 mg instead. My pulse regularly runs in the 50s or low 60s, so that is a normal for me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I am right now taking 5mg Enalapril (was on 20mg) along with another. I have found that if you have two types of B/P meds take one at night with dinner then when start feeling tired its almost bed time. I was on 20mg but when I drop down so low that they had a hard time getting a reading it made them a little nervous so my neph drop it down to 5mg. I can't tell you if that's why I am tried a lot; it could be the other 7 meds that I am on. Try taking at night is all I can suggest, that and keep a journal on your B/P. Martha > Dear all, > > It has been a while since I have had the time to read the messages > and it's undoable to read them all I'm affraid. Hope everyone is > doing ok. > > Just a short update on my current Igan " situation " . > After 7 years I started taking ace inhibitors (since 2 weeks). 10 > mg/day of Enalapril. This because I still had 6 g/24 hours of protein > in my urine. Just as in december. So it didn't get worse but is > ofcourse far to high. > My bp has always been rather low and is certainly low now. Sometimes > even below 100/60. (I monitored my bp for the past 2 weeks.) > Does anyone know how much time it takes to get used to this kind of > medication and what should be an optimal bp? > Sometimes I feel quite dizzy and see everything black as I stand up > (has to do with low bp no doubt). Besides I'm more often really > tired. Last weekend was really terrible. I had to go to bed even in > the afternoon because I couldn't get one foot before the other. > And what about a polse of 51 to 62? Is that normal? > Really don't know much about these things I'm affraid ;-) > > Doortje Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I am right now taking 5mg Enalapril (was on 20mg) along with another. I have found that if you have two types of B/P meds take one at night with dinner then when start feeling tired its almost bed time. I was on 20mg but when I drop down so low that they had a hard time getting a reading it made them a little nervous so my neph drop it down to 5mg. I can't tell you if that's why I am tried a lot; it could be the other 7 meds that I am on. Try taking at night is all I can suggest, that and keep a journal on your B/P. Martha > Dear all, > > It has been a while since I have had the time to read the messages > and it's undoable to read them all I'm affraid. Hope everyone is > doing ok. > > Just a short update on my current Igan " situation " . > After 7 years I started taking ace inhibitors (since 2 weeks). 10 > mg/day of Enalapril. This because I still had 6 g/24 hours of protein > in my urine. Just as in december. So it didn't get worse but is > ofcourse far to high. > My bp has always been rather low and is certainly low now. Sometimes > even below 100/60. (I monitored my bp for the past 2 weeks.) > Does anyone know how much time it takes to get used to this kind of > medication and what should be an optimal bp? > Sometimes I feel quite dizzy and see everything black as I stand up > (has to do with low bp no doubt). Besides I'm more often really > tired. Last weekend was really terrible. I had to go to bed even in > the afternoon because I couldn't get one foot before the other. > And what about a polse of 51 to 62? Is that normal? > Really don't know much about these things I'm affraid ;-) > > Doortje Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I take zestril the same type of ace inhibitor and I only take 2.5mg. If you are getting that dizzy you need to talk to your dr. when I was first put on it,I was also on toprol( a beta blocker)which is another type of BP med and my BP was too low, I was dizzy and had nausea, so they stopped the toprol and kept me on the zestril since it helps protect the kidney. hope that helps, christine > Dear all, > > It has been a while since I have had the time to read the messages > and it's undoable to read them all I'm affraid. Hope everyone is > doing ok. > > Just a short update on my current Igan " situation " . > After 7 years I started taking ace inhibitors (since 2 weeks). 10 > mg/day of Enalapril. This because I still had 6 g/24 hours of protein > in my urine. Just as in december. So it didn't get worse but is > ofcourse far to high. > My bp has always been rather low and is certainly low now. Sometimes > even below 100/60. (I monitored my bp for the past 2 weeks.) > Does anyone know how much time it takes to get used to this kind of > medication and what should be an optimal bp? > Sometimes I feel quite dizzy and see everything black as I stand up > (has to do with low bp no doubt). Besides I'm more often really > tired. Last weekend was really terrible. I had to go to bed even in > the afternoon because I couldn't get one foot before the other. > And what about a polse of 51 to 62? Is that normal? > Really don't know much about these things I'm affraid ;-) > > Doortje Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Pierre, cool, I haven't seen a generic form here. Do you use much Altace in Canada? Bonnie Pierre L wrote:I'm pretty sure there is a generic version of Altace (ramipril), at least here in Canada. Pierre Re: starting medication :-( > Doortje, I agree it is a good idea to wait another 2 weeks to see how you feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, sitting, and standing. If you drop 20 points in your systolic from lying to sitting or sitting to standing, that is considered significant. If you drop that much, it usually indicates too much antihypertensive or dehydration. If that occurs, I would not necissarily wait for two weeks. Also make sure you are well hydrated. If all that checks out O.K, you may want to consider asking your Neph about Altace. It is another ACE inhibitor, which is actually my favorite. Very low risk profile and the dosage range is from 2.5 mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and very minimal side effects. I like to split the dose am and pm then I don't get quite so tired and it keeps my B/P lower over the 24 hour period.(Used to wake up with splitting headaches due to high B/P. Now hardly ever have headaches). Let > me know how your doing in a few days. P.S. Altace is an expensive one, but I think well worth it. Bonnie > 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 June 17, 2004 Report Share Posted June 17, 2004 Pierre, cool, I haven't seen a generic form here. Do you use much Altace in Canada? Bonnie Pierre L wrote:I'm pretty sure there is a generic version of Altace (ramipril), at least here in Canada. Pierre Re: starting medication :-( > Doortje, I agree it is a good idea to wait another 2 weeks to see how you feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, sitting, and standing. If you drop 20 points in your systolic from lying to sitting or sitting to standing, that is considered significant. If you drop that much, it usually indicates too much antihypertensive or dehydration. If that occurs, I would not necissarily wait for two weeks. Also make sure you are well hydrated. If all that checks out O.K, you may want to consider asking your Neph about Altace. It is another ACE inhibitor, which is actually my favorite. Very low risk profile and the dosage range is from 2.5 mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and very minimal side effects. I like to split the dose am and pm then I don't get quite so tired and it keeps my B/P lower over the 24 hour period.(Used to wake up with splitting headaches due to high B/P. Now hardly ever have headaches). Let > me know how your doing in a few days. P.S. Altace is an expensive one, but I think well worth it. Bonnie > 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 June 18, 2004 Report Share Posted June 18, 2004 I know many people who are on Altace, including relatives (not related to kidney disease, just for high blood pressure). It seems to be a very common prescription. One nice thing about it is that it comes in a very small 2.5mg dose - a tiny little gelatin capsulte. It's actually kind of cute Unfortunately, in my case, it was Altace that sent me to Emerg with a swelling throat some years ago. I ended up having to take prednisone and Benadryl for a week. Fortunately, that's pretty rare. I'm the only person on this group and others I recall who actually had the angioedema reaction. But then, I do have a long history of respiratory and skin allergies. Pierre Re: starting medication :-( > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how you > feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, > sitting, and standing. If you drop 20 points in your systolic from lying to > sitting or sitting to standing, that is considered significant. If you drop > that much, it usually indicates too much antihypertensive or dehydration. > If that occurs, I would not necissarily wait for two weeks. Also make sure > you are well hydrated. If all that checks out O.K, you may want to consider > asking your Neph about Altace. It is another ACE inhibitor, which is > actually my favorite. Very low risk profile and the dosage range is from 2.5 > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and > very minimal side effects. I like to split the dose am and pm then I don't > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > to wake up with splitting headaches due to high B/P. Now hardly ever have > headaches). Let > > me know how your doing in a few days. P.S. Altace is an expensive one, > but I think well worth it. Bonnie > > > > > > 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 June 18, 2004 Report Share Posted June 18, 2004 Thank you Bonnie.I will certainly take up on your advice on getting orthostatic bp's. Doortje > > Hi Doortje, > > > > I am sorry the past two weeks have been so hard on you. Your BP is > low. Amy > > has been having problems with dizziness with her low BP lately > too. Please > > do call your doctor and let him know how bad your dizziness is OK? > Maybe your > > Neph could start you on 5 mg instead. > > > > My pulse regularly runs in the 50s or low 60s, so that is a normal > for me. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Thank you Bonnie.I will certainly take up on your advice on getting orthostatic bp's. Doortje > > Hi Doortje, > > > > I am sorry the past two weeks have been so hard on you. Your BP is > low. Amy > > has been having problems with dizziness with her low BP lately > too. Please > > do call your doctor and let him know how bad your dizziness is OK? > Maybe your > > Neph could start you on 5 mg instead. > > > > My pulse regularly runs in the 50s or low 60s, so that is a normal > for me. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Hi Pierre, Thanks for sharing all your knowledge. I have a questions earlier I posted a question with regard to arm and leg pain. Someone else mentioned that have that as well. Everyone I talk to (meaning doc's) have said it could be water retention or FibroMialgia (sp)could this be associated with IGA? The best way I can explain the pain is that it is very slow moving cramping. Dawn McReynolds Aurora Women's Center, Inc. Headquarters 19946 Harper Harper Woods, MI 48225 Located in the Salvation Army Building 24140 Mound Warren, MI 48091 _____ From: Pierre L Sent: Friday, June 18, 2004 7:44 AM To: iga-nephropathy Subject: Re: starting medication :-( I know many people who are on Altace, including relatives (not related to kidney disease, just for high blood pressure). It seems to be a very common prescription. One nice thing about it is that it comes in a very small 2.5mg dose - a tiny little gelatin capsulte. It's actually kind of cute Unfortunately, in my case, it was Altace that sent me to Emerg with a swelling throat some years ago. I ended up having to take prednisone and Benadryl for a week. Fortunately, that's pretty rare. I'm the only person on this group and others I recall who actually had the angioedema reaction. But then, I do have a long history of respiratory and skin allergies. Pierre Re: starting medication :-( > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how you > feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, > sitting, and standing. If you drop 20 points in your systolic from lying to > sitting or sitting to standing, that is considered significant. If you drop > that much, it usually indicates too much antihypertensive or dehydration. > If that occurs, I would not necissarily wait for two weeks. Also make sure > you are well hydrated. If all that checks out O.K, you may want to consider > asking your Neph about Altace. It is another ACE inhibitor, which is > actually my favorite. Very low risk profile and the dosage range is from 2.5 > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and > very minimal side effects. I like to split the dose am and pm then I don't > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > to wake up with splitting headaches due to high B/P. Now hardly ever have > headaches). Let > > me know how your doing in a few days. P.S. Altace is an expensive one, > but I think well worth it. Bonnie > > > > > > 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 June 18, 2004 Report Share Posted June 18, 2004 Hi Pierre, Thanks for sharing all your knowledge. I have a questions earlier I posted a question with regard to arm and leg pain. Someone else mentioned that have that as well. Everyone I talk to (meaning doc's) have said it could be water retention or FibroMialgia (sp)could this be associated with IGA? The best way I can explain the pain is that it is very slow moving cramping. Dawn McReynolds Aurora Women's Center, Inc. Headquarters 19946 Harper Harper Woods, MI 48225 Located in the Salvation Army Building 24140 Mound Warren, MI 48091 _____ From: Pierre L Sent: Friday, June 18, 2004 7:44 AM To: iga-nephropathy Subject: Re: starting medication :-( I know many people who are on Altace, including relatives (not related to kidney disease, just for high blood pressure). It seems to be a very common prescription. One nice thing about it is that it comes in a very small 2.5mg dose - a tiny little gelatin capsulte. It's actually kind of cute Unfortunately, in my case, it was Altace that sent me to Emerg with a swelling throat some years ago. I ended up having to take prednisone and Benadryl for a week. Fortunately, that's pretty rare. I'm the only person on this group and others I recall who actually had the angioedema reaction. But then, I do have a long history of respiratory and skin allergies. Pierre Re: starting medication :-( > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how you > feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, > sitting, and standing. If you drop 20 points in your systolic from lying to > sitting or sitting to standing, that is considered significant. If you drop > that much, it usually indicates too much antihypertensive or dehydration. > If that occurs, I would not necissarily wait for two weeks. Also make sure > you are well hydrated. If all that checks out O.K, you may want to consider > asking your Neph about Altace. It is another ACE inhibitor, which is > actually my favorite. Very low risk profile and the dosage range is from 2.5 > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and > very minimal side effects. I like to split the dose am and pm then I don't > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > to wake up with splitting headaches due to high B/P. Now hardly ever have > headaches). Let > > me know how your doing in a few days. P.S. Altace is an expensive one, > but I think well worth it. Bonnie > > > > > > 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 June 18, 2004 Report Share Posted June 18, 2004 Hi Pierre, Thanks for sharing all your knowledge. I have a questions earlier I posted a question with regard to arm and leg pain. Someone else mentioned that have that as well. Everyone I talk to (meaning doc's) have said it could be water retention or FibroMialgia (sp)could this be associated with IGA? The best way I can explain the pain is that it is very slow moving cramping. Dawn McReynolds Aurora Women's Center, Inc. Headquarters 19946 Harper Harper Woods, MI 48225 Located in the Salvation Army Building 24140 Mound Warren, MI 48091 _____ From: Pierre L Sent: Friday, June 18, 2004 7:44 AM To: iga-nephropathy Subject: Re: starting medication :-( I know many people who are on Altace, including relatives (not related to kidney disease, just for high blood pressure). It seems to be a very common prescription. One nice thing about it is that it comes in a very small 2.5mg dose - a tiny little gelatin capsulte. It's actually kind of cute Unfortunately, in my case, it was Altace that sent me to Emerg with a swelling throat some years ago. I ended up having to take prednisone and Benadryl for a week. Fortunately, that's pretty rare. I'm the only person on this group and others I recall who actually had the angioedema reaction. But then, I do have a long history of respiratory and skin allergies. Pierre Re: starting medication :-( > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how you > feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, > sitting, and standing. If you drop 20 points in your systolic from lying to > sitting or sitting to standing, that is considered significant. If you drop > that much, it usually indicates too much antihypertensive or dehydration. > If that occurs, I would not necissarily wait for two weeks. Also make sure > you are well hydrated. If all that checks out O.K, you may want to consider > asking your Neph about Altace. It is another ACE inhibitor, which is > actually my favorite. Very low risk profile and the dosage range is from 2.5 > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and > very minimal side effects. I like to split the dose am and pm then I don't > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > to wake up with splitting headaches due to high B/P. Now hardly ever have > headaches). Let > > me know how your doing in a few days. P.S. Altace is an expensive one, > but I think well worth it. Bonnie > > > > > > 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 June 18, 2004 Report Share Posted June 18, 2004 Pierre, just out of curiousity, after the angioedema with Altace, were you able to take any other ACE I's? Total bummer about the Altace though. Angioedema is scary stuff. I have to go off Altace and Avapro tomorrow and start Lisinopril. Way lower dose of Lisinopril, so I'm hoping my B/P doesn't sky rocket. I've heard it's a 4:1 ratio from Lisinopril to Altace (40 mg of Lisinopril = 10 of Altace) and I'm maxed out on Altace (20 mg/day) so I'm a little bit confused why they are starting quite so low on the Lisinopril at 17.5 mg/day, especially since I have to go off the Avapro too. Any thoughts, other than just hoping I tolerate the drug OK? I go back to Mayo in 2 weeks so no biggie, and I am very comfortable calling them if my B/P sky rockets. Just hate to give up the Altace though, cause I've had nothing but good success, and very minimal side effects. But if the research on Cellcept works, I'll be soooooo glad to help others who have Ig A and hopefully other folks will be able to have this as an option for treatment. Bonnie Pierre L wrote:I know many people who are on Altace, including relatives (not related to kidney disease, just for high blood pressure). It seems to be a very common prescription. One nice thing about it is that it comes in a very small 2.5mg dose - a tiny little gelatin capsulte. It's actually kind of cute Unfortunately, in my case, it was Altace that sent me to Emerg with a swelling throat some years ago. I ended up having to take prednisone and Benadryl for a week. Fortunately, that's pretty rare. I'm the only person on this group and others I recall who actually had the angioedema reaction. But then, I do have a long history of respiratory and skin allergies. Pierre Re: starting medication :-( > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how you > feel. May also want to get orthostatic B/P's. (lying and sitting, or lying, > sitting, and standing. If you drop 20 points in your systolic from lying to > sitting or sitting to standing, that is considered significant. If you drop > that much, it usually indicates too much antihypertensive or dehydration. > If that occurs, I would not necissarily wait for two weeks. Also make sure > you are well hydrated. If all that checks out O.K, you may want to consider > asking your Neph about Altace. It is another ACE inhibitor, which is > actually my favorite. Very low risk profile and the dosage range is from 2.5 > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, and > very minimal side effects. I like to split the dose am and pm then I don't > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > to wake up with splitting headaches due to high B/P. Now hardly ever have > headaches). Let > > me know how your doing in a few days. P.S. Altace is an expensive one, > but I think well worth it. Bonnie > > > > > > 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 June 18, 2004 Report Share Posted June 18, 2004 Hi Dawn, I was talking someone who is running a special study on MPGN (my son's kidney disease) out of the University of Iowa. I had mentioned that there was a family history of fibromyalia. The nurse told me that she had just read a paper in which something stunning like 93% of all cases of fibromyalia are associated with vitiman D deficiencies. Let me dig up the post and I'll email it to you privately. Cy Re: starting medication :-( > > > > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how > you > > feel. May also want to get orthostatic B/P's. (lying and sitting, or > lying, > > sitting, and standing. If you drop 20 points in your systolic from lying > to > > sitting or sitting to standing, that is considered significant. If you > drop > > that much, it usually indicates too much antihypertensive or dehydration. > > If that occurs, I would not necissarily wait for two weeks. Also make > sure > > you are well hydrated. If all that checks out O.K, you may want to > consider > > asking your Neph about Altace. It is another ACE inhibitor, which is > > actually my favorite. Very low risk profile and the dosage range is from > 2.5 > > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, > and > > very minimal side effects. I like to split the dose am and pm then I don't > > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > > to wake up with splitting headaches due to high B/P. Now hardly ever have > > headaches). Let > > > me know how your doing in a few days. P.S. Altace is an expensive one, > > but I think well worth it. Bonnie > > > > > > > > > > > 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 June 19, 2004 Report Share Posted June 19, 2004 Cy, I would be interested in the information you have on Vitamin D deficiency/fibromyalgia also if you wouldn't mind to send it my way. I have several patients with fibromyalgia and usually have to refer these patients to a specialist which sometimes can take several weeks to a month or more. Maybe we could try Vit D in the mean time along with our usual treatments. Might be worth a try. Thanks Bonnie Cy Webb wrote:Hi Dawn, I was talking someone who is running a special study on MPGN (my son's kidney disease) out of the University of Iowa. I had mentioned that there was a family history of fibromyalia. The nurse told me that she had just read a paper in which something stunning like 93% of all cases of fibromyalia are associated with vitiman D deficiencies. Let me dig up the post and I'll email it to you privately. Cy Re: starting medication :-( > > > > > > > Doortje, I agree it is a good idea to wait another 2 weeks to see how > you > > feel. May also want to get orthostatic B/P's. (lying and sitting, or > lying, > > sitting, and standing. If you drop 20 points in your systolic from lying > to > > sitting or sitting to standing, that is considered significant. If you > drop > > that much, it usually indicates too much antihypertensive or dehydration. > > If that occurs, I would not necissarily wait for two weeks. Also make > sure > > you are well hydrated. If all that checks out O.K, you may want to > consider > > asking your Neph about Altace. It is another ACE inhibitor, which is > > actually my favorite. Very low risk profile and the dosage range is from > 2.5 > > mg to 20 mg. (Nice big range to work with). I'm on the 20 mg per day, > and > > very minimal side effects. I like to split the dose am and pm then I don't > > get quite so tired and it keeps my B/P lower over the 24 hour period.(Used > > to wake up with splitting headaches due to high B/P. Now hardly ever have > > headaches). Let > > > me know how your doing in a few days. P.S. Altace is an expensive one, > > but I think well worth it. Bonnie > > > > > > > > > > > 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 June 19, 2004 Report Share Posted June 19, 2004 Hi Bonnie. I was told to never let anybody prescribe an ACE inhibitor to me again, and nobody every did. There has been some suggestion that another sub-class of ACE inhibitor might be OK, but, angioedema is a life-threatening thing, so, it's not worth the risk. Since then (1995, as I recall), I've been on angiotensin II receptor blockers though, ie. Avapro. No problem with those (they are also capable of angioedema, but to a much lesser extent than ACE inhibitors). I have no idea why they would start on a low dose of lisinopril. Maybe it's just part of the protocol for their trial, for some reason. It hasn't been my experience that BP skyrockets when you stop drugs like Altace and Avapro. There is no rebound effect from stopping these drugs, unlike beta blockers, alpha blockers, clonidine, some calcium channel blockers, etc. Your BP should just gently go back to where it would be without drugs, but no more. Even then, the dose of lisinopril should help prevent that. You might even notice you have apparently improved kidney function (both Altace and Avapro will usually impact to some extent on serum creatinine, even though it's still beneficial in the long run). Good luck with that. Pierre Re: starting medication :-( > Pierre, just out of curiousity, after the angioedema with Altace, were you able to take any other ACE I's? Total bummer about the Altace though. Angioedema is scary stuff. I have to go off Altace and Avapro tomorrow and start Lisinopril. Way lower dose of Lisinopril, so I'm hoping my B/P doesn't sky rocket. I've heard it's a 4:1 ratio from Lisinopril to Altace (40 mg of Lisinopril = 10 of Altace) and I'm maxed out on Altace (20 mg/day) so I'm a little bit confused why they are starting quite so low on the Lisinopril at 17.5 mg/day, especially since I have to go off the Avapro too. Any thoughts, other than just hoping I tolerate the drug OK? I go back to Mayo in 2 weeks so no biggie, and I am very comfortable calling them if my B/P sky rockets. Just hate to give up the Altace though, cause I've had nothing but good success, and very minimal side effects. But if the research on Cellcept works, I'll be soooooo glad to help others who have Ig A and hopefully other folks will be > able to have this as an option for treatment. Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 Thanks Pierre, you must have ESP, cause I was just checking messages this am, and you were just sending me your reply. Thanks so much for this web site. In the past few days of being on line with you folks I think I've learned almost as much info (and maybe more in certain respects) regarding Ig A than I have in the medical literature. I wasn't so concerned about rebounding with the Lisinopril as I was concerned about taking a step backward with B/P's//proteinuria etc. because it appears that my kidney function has improved nearly an astonishing 50% in 4 months on the relatively high dose Altace, Avapro and high dose fish oil. Just wait and see I guess. I have all the confidence in the world with my neph's, I'm just so thankful they found (and appropriately treated) my Ig A early on, and also referred me on to Mayo for the research. Thanks again. P.S. How was it that you decided to start this web site? You seem unbelievably knowledgable in Ig A medically, emotionally and spiritually. It's just so great to be able to talk to folks who have " been there, done that " through out our process, although I know we all come from a little bit different perspectives. Take good care, and thanks so much, truely from the heart. Bonnie Pierre L wrote:Hi Bonnie. I was told to never let anybody prescribe an ACE inhibitor to me again, and nobody every did. There has been some suggestion that another sub-class of ACE inhibitor might be OK, but, angioedema is a life-threatening thing, so, it's not worth the risk. Since then (1995, as I recall), I've been on angiotensin II receptor blockers though, ie. Avapro. No problem with those (they are also capable of angioedema, but to a much lesser extent than ACE inhibitors). I have no idea why they would start on a low dose of lisinopril. Maybe it's just part of the protocol for their trial, for some reason. It hasn't been my experience that BP skyrockets when you stop drugs like Altace and Avapro. There is no rebound effect from stopping these drugs, unlike beta blockers, alpha blockers, clonidine, some calcium channel blockers, etc. Your BP should just gently go back to where it would be without drugs, but no more. Even then, the dose of lisinopril should help prevent that. You might even notice you have apparently improved kidney function (both Altace and Avapro will usually impact to some extent on serum creatinine, even though it's still beneficial in the long run). Good luck with that. Pierre Re: starting medication :-( > Pierre, just out of curiousity, after the angioedema with Altace, were you able to take any other ACE I's? Total bummer about the Altace though. Angioedema is scary stuff. I have to go off Altace and Avapro tomorrow and start Lisinopril. Way lower dose of Lisinopril, so I'm hoping my B/P doesn't sky rocket. I've heard it's a 4:1 ratio from Lisinopril to Altace (40 mg of Lisinopril = 10 of Altace) and I'm maxed out on Altace (20 mg/day) so I'm a little bit confused why they are starting quite so low on the Lisinopril at 17.5 mg/day, especially since I have to go off the Avapro too. Any thoughts, other than just hoping I tolerate the drug OK? I go back to Mayo in 2 weeks so no biggie, and I am very comfortable calling them if my B/P sky rockets. Just hate to give up the Altace though, cause I've had nothing but good success, and very minimal side effects. But if the research on Cellcept works, I'll be soooooo glad to help others who have Ig A and hopefully other folks will be > able to have this as an option for treatment. Bonnie > 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 June 21, 2004 Report Share Posted June 21, 2004 Hmm. I have IGAN, my sister has fibromyalgia. Remember the article that said that Autoimmune diseases run in families -- it's not clear that everyone gets the same disease, but that different members of the same family may get one of many diseases? I realize that IGAN is still not proven to be autoimmune, but when you see stuff like this, you wonder... Walt _____ From: Pierre L Sent: Saturday, June 19, 2004 8:42 AM To: iga-nephropathy Subject: Re: starting medication :-( I don't know that IgAN itself would cause arm or leg pain. With more advanced chronic renal insufficiency later on, some people might be prone to cramps in the feet or lower legs. I've never heard of it in the arms though. I personally have never heard of any association between IgAN and fibromyalgia. Could be just a coincidence that you have both, who knows? Pierre RE: starting medication :-( > Hi Pierre, > > Thanks for sharing all your knowledge. I have a questions earlier I posted a > question with regard to arm and leg pain. Someone else mentioned that have > that as well. Everyone I talk to (meaning doc's) have said it could be water > retention or FibroMialgia (sp)could this be associated with IGA? The best > way I can explain the pain is that it is very slow moving cramping. > > > > Dawn McReynolds > 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 June 21, 2004 Report Share Posted June 21, 2004 In a message dated 6/21/2004 1:39:39 PM Pacific Daylight Time, wcrosby@... writes: > I have IGAN, my sister has fibromyalgia. Does make you wonder Walt. My sister has IgAN too, although a very very very mild form that has not progressed at all in 30 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Ooops - just caught a typo... I intended to say maternal grandmother. We'll have to wait a bit before Madonna starts belting out " material grandmother " . Cy Re: starting medication :-( > > > > In a message dated 6/21/2004 1:39:39 PM Pacific Daylight Time, > > wcrosby@... writes: > > > > > I have IGAN, my sister has fibromyalgia. > > > > Does make you wonder Walt. My sister has IgAN too, although a very very > very > > mild form that has not progressed at all in 30 years. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Ooops - just caught a typo... I intended to say maternal grandmother. We'll have to wait a bit before Madonna starts belting out " material grandmother " . Cy Re: starting medication :-( > > > > In a message dated 6/21/2004 1:39:39 PM Pacific Daylight Time, > > wcrosby@... writes: > > > > > I have IGAN, my sister has fibromyalgia. > > > > Does make you wonder Walt. My sister has IgAN too, although a very very > very > > mild form that has not progressed at all in 30 years. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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