Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hey Thom, Boy do I understand tough getting up in the mornings! The fatigue can really be hard to deal with. I always sleep in on Saturday mornings because with church on Sundays, that is my only day to just sleep until I naturally wake up. Have you had your hematocrit checked? When I was anemic before I started Epo a couple of years ago it was much worse. The Epo really does help. On the sore feet, are you having swelling (edema)? Is so, that would be related to spilling protein. I have that off and on, but it doesn't cause my feet to be sore per se. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi Rotgi, I have never heard anything about laying on your left side in relationship to renal disease. I do remember that when I was pregnant with my two girls, but that is the only time any doctor has mentioned it to me. My creatinine clearance is 32, and I can tell you that for me, my fatigue level has remained pretty consistent since I was around a creatinine clearance was higher. The only time my fatigue was worse was when I was anemic, but that was corrected with Epogen. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Dear Thom, I was actually relieved to find out other people with IgAN had fatigue and it wasn't just some kind of character flaw on my part! It explains a lot. Ever since I was a child I have needed a lot more sleep than everyone else. I HATE waking up in the morning. I always still very so tired when I get up. Once I'm up I'm ok, but then I might get tired again later sooner than I should. An interesting thing was when I had just been diagnosed about a year earlier, I was in Japan as an exchange student. I had gotten the flu and was in bed for a week with severe hematuria, fevers, etc. So when I felt better I went to a Japanese nephrologist. They urged me to lay on my left side and stay horizontal as much as possible during my life. Does anyone know about this kind of suggestion? I know when you are pregnant they say laying on your left side increases blood flow to the baby. So luckily I do lie down a lot when I am watching TV. Today for example, was my first day off of work. I worked for three days from about 9 - 8 and was pretty tired last night. So then I slept until 11:30 am today. About 12 hours. I really feel that I needed every hour. Now I feel sort of still tired like I just want to " veg out " today. My question is for everybody is -- is the fatigue people get only with advanced disease? My creatinine clearance is 67 and even when it was over 100 and normal I still had to sleep a lot. Does anyone know about the laying on the left side thing and staying horizontal? Rotghi > > > Date: 2003/06/12 Thu PM 12:40:02 EDT > To: <iga-nephropathy > > Subject: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 That is very interesting Rotgi. I was just changed from Lisinopril to Cozaar this week, so I will see shortly what if any change I get from it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Thom, What you describe below is just about a mirror image of my experience with fatigue. My doctor has told me that people with increased BP almost always feel worse after starting BP meds, but that they are a necessary evil if you want to try to stop/slow down further damage to the kidneys. Like you, my numbers have been stable for a good while now, but the fatigue is gradually getting worse. I forgot to take my BP meds all day Monday of this week, which means I hadn't had any of them since about 9pm Sunday night. I awoke Tuesday morning feeling energetic and mentally sharp for the first time since I started BP treatment back in Feb '02. In my case, and my doctor backs this up, the BP meds are the main cause of my fatigue. I was virtually symptom-free until treatment began, other than occasional blood in the urine, which was evident as far back as 7 years prior to diagnosis. Fatigue Pierre I was wondering if you or anyone else experiences increased fatigue , especially in the morning. I am normally an early riser and over the last few years , since diagnosis, I have a lot more trouble getting up in the morning. I wake up at the usual time but I'm dragging my but all day. Some mornings I just can't get up early. The other thing is I recently started getting sore feet, at work I've even taken my shoes off for a little while just so they wouldn't hurt as much. I have done well fighting and ignoring some of the effects of IGA but the last 6 months seems to have been a little tougher, my numbers have not changed all that much either. Can anyone relate to this?? Thom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Thanks , it's good to know I'm not just imagining this. This also explaines why I actually feel better at first when I forget to take my BP meds. Thanks again Thom Fatigue Pierre I was wondering if you or anyone else experiences increased fatigue , especially in the morning. I am normally an early riser and over the last few years , since diagnosis, I have a lot more trouble getting up in the morning. I wake up at the usual time but I'm dragging my but all day. Some mornings I just can't get up early. The other thing is I recently started getting sore feet, at work I've even taken my shoes off for a little while just so they wouldn't hurt as much. I have done well fighting and ignoring some of the effects of IGA but the last 6 months seems to have been a little tougher, my numbers have not changed all that much either. Can anyone relate to this?? Thom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 I don't take fish oil, but I have heard it might be best to take it at night to avoid the fishy burps that can go with it in the daytime. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Dear , What BP meds are you on? Rotghi > > > Date: 2003/06/12 Thu PM 03:47:48 EDT > To: " 'iga-nephropathy ' " <iga-nephropathy > > Subject: RE: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Rotghi, Monopril 10mg 2/day Norvasc 5mg 1/day Lasix 40mg 2/day Was also taking Clonidine .2mg 3/day, but it made me very sleepy all the time, so with my doctor's blessing, I quit taking it. RE: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Dear , I'm not aware of those medications making people tired, but I'll look into it. I'm surprised about the Norvasc though. Not the best Ca channel blocker for protein reduction. Rotghi > > > Date: 2003/06/12 Thu PM 06:24:53 EDT > To: " 'iga-nephropathy ' " <iga-nephropathy > > Subject: RE: RE: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 > Good luck. Not sure how long it takes to tell. Ask your nephrologist about doing the lisinopril plus cozaar. Maybe 1/2 doses of each? Just a thought. By the way everybody -- I just went to the health food store and got gluten free, dairy free food and fish oil pills. Little scared to take the fish oil though. Any suggestions on how to take it so you don't smell like fish or taste the fish oil? Help!!!! Rotghi > From: W4JC@... > Date: 2003/06/12 Thu PM 06:25:14 EDT > To: iga-nephropathy > Subject: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Great idea!! Wish me luck! Rotghi > > From: W4JC@... > Date: 2003/06/12 Thu PM 09:41:40 EDT > To: iga-nephropathy > Subject: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi Rotghi, scarfs down the fishoil four at a time without tell-tale fish odors or fishy burps. Hopefully, you'll be lucky too. The only problem is when he was goofing around, stuck pins in a capsule and the fish oil leaked out onto his sweat jacket. In terms of pervasive odors, cat pee doesn't hold a candle to fish oil for smells that are hard to remove from clothing! Cy Cy Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Also if you keep the fish oil capsules in the refrigerator, they are supposed to dissolve lower in the G.I. tract  hence, less aftertaste. Good luck. Betsy > >> > Good luck. Not sure how long it takes to tell. Ask your nephrologist >> about doing the lisinopril plus cozaar. Maybe 1/2 doses of each? Just a >> thought. > > By the way everybody -- I just went to the health food store and got gluten > free, dairy free food and fish oil pills. Little scared to take the fish oil > though. Any suggestions on how to take it so you don't smell like fish or > taste the fish oil? Help!!!! > > Rotghi > >> > From: W4JC@... >> > Date: 2003/06/12 Thu PM 06:25:14 EDT >> > To: iga-nephropathy >> > Subject: Re: Fatigue >> > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Thanks Cy!! I wonder if soaking the coat in vinegar might help. I know that it helped with getting terrible cigarrete smoke smell out of a great fabric tote that I bought from a thrift shop. Nothing else worked. Take care, Rotghi > > > Date: 2003/06/12 Thu PM 10:33:48 EDT > To: <iga-nephropathy > > Subject: Re: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Makes sense!! Thanks I'll try it! How much am I supposed to take? Should I start with a lower dose and go up? Rotghi > > Date: 2003/06/12 Thu PM 10:42:03 EDT > To: <iga-nephropathy > > Subject: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Good morning , The reason my Nephrologist took me off the ACE is because my potassium was running so high, and ACE inhibitors can contribute to increased potassium. Mine has gotten critically high twice to the point that they wanted me to go to the emergency room to get it down. He is hoping the ARB will still give me the renal protective measure with hopefully less an impact on my potassium level. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Thanks , I hope it works too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 I take my fish pills before I eat so I am less likely to have fish burps. It hasn't bothered me at all. Nadia Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Atenolol can definitely make you tired. Rotghi > > > Date: 2003/06/13 Fri AM 06:09:49 EDT > To: iga-nephropathy > Subject: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 > Dear , I think your nephrologist if progressive. He's practicing according to the new studies I've seen -- ACE and ARB together. Rotghi > > Date: 2003/06/13 Fri AM 09:34:22 EDT > To: iga-nephropathy > Subject: Re: Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Hi Connie, I know our serum creatinine runs about the same, but I was wondering about your creatinine clearance. Mine is down to 32, but I think I have more problems than you are having in terms of potassium, anemia and more recently, I have started having problems with my BP rising. I used to always be 110/70 or so, and now even with Lisinopril it has been 135/90. I did stop Lisinopril 3 weeks ago to see if it will help lower my potassium, and started on Cozaar to see if that helps, but I was just wondering why I seem to have so many more complications of compromised renal function than you do since we are pretty much the same serum creatinine. Perhaps your creatinine clearance is higher than mine is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Both these classes of drugs work on the same blood pressure regulating system, and when used together, they block it more completely. It's debatable as to whether this provides more benefit than simply increasing the dose of one to the maximum. There can be blood pressure issues involved, as well as side effects. Many people can't take an ACE inhibitor due to the cough, but they can tolerate an ARB. Pierre Re: Re: Fatigue > > > Dear , > > I think your nephrologist if progressive. He's practicing according to the new studies I've seen -- ACE and ARB together. > > Rotghi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Rotghi and Thom, I just had to laugh when you said that you were glad that others had fatigue also and that it wasn't a character flaw on your part! Very funny. I definitely understand about needing the 12 hours sleep. I try to sleep in on Saturdays because I'm always so busy that normally it is the only day that I don't have to plan anything early. But I do however feel somewhat guilty that I can waste an entire day by sleeping late and maybe even taking a nap in the afternoon. I never feel rested when I wake up even if I have gotten in a good 8-10 hours sleep! My levels are not low enough for EPO so I just plug along and sleep or rest when I can. Connie Co-Moderator, USA Fatigue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Rotghi, The way my doctor explained it, I probably had slightly high BP for several years (getting worse over those years) prior to diagnosis and treatment. Now that my BP is fairly normal with medication, it is actually quite low in relation to the past. He told me that the body will adjust to upward changes in BP very easily when the changes are gradual over many years, but bringing it back down suddenly with medication is a much tougher adjustment, and that some people never adjust, they just feel tired and cold a lot of the time. I am now chilly a lot of the time, and the strength literally drains out of my arms if I'm working on something overhead, such as screwing in a light bulb or hanging a plant; I've had my wife check, and the warmth will drain out of my hands and forearms, as if the blood no longer has enough pressure to get up above my head. I had none of these symptoms until starting BP meds. RE: RE: Fatigue > > Quote Link to comment Share on other sites More sharing options...
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