POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: deibster on November 23, 2011, 07:58:47 pm
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Hello & a Happy Holiday Season to All,
I am relative healthy; except for one time, viral loads have been undetectable for 6 yrs & CD4s in the 650 to 800 range. I do have fatigue & major depression, being treated. I was on Viread for 3 to 4 years and my serum creatinine crept up from normal (0.5 to 1.5 for a man) to 1.7, 1.8 & 1.9. I was taken off of Viread - the presumed culprit - in June, and in 4 months my serum creatinine came down to 1.7.
My brother (an MD, internal medicine) says I have moderate renal insufficiency. I'm stressed because the diet for kidney disease is Very low protein & moderate fluids. The diet for HIV disease is plenty of protein & 8 glasses of water per day, copious fluids.
Has anyone else had any experience with kidney disease while on HIV treatment? My ID doc is staying out of the discussion for now; wants to wait for another serum creatinine level in another 8 weeks. I guess, I'll move the labs up to 6 weeks and try to see my ID doc soon after that. Any info or support would be appreciated. Hugs from Provincetown cape cod, Deiby
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Hey Deibster,
Your doctor did the right thing by taking you off of the Tenofovir.
Whether you should go on a renal-supportive diet is a real question. I think I would go with your doctor's advice and wait to see how your creatinine levels are doing.
My kidney issues involved PIs, such as Crixivan, which caused other types of kidney problems.
Keep us posted on what your doctor says.
HUGS,
Mark
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Hi,
Wish I had some advice to offer you. To date, I never had any issues with the kidneys. I was on Viread for about 5 years, as part of a 4 drug regimen. ( viramune, Epzicom, and Viread) I dropped the viread, toward the end of 2009.
Keep us updated---Ray
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Unfortunately, I do have any special advice to share since (knock on wood) I don't have any kidney problems and the diet I'm on for gastroparesis isn't one I'd recommend to anyone. :( But I did want to lend my support so please keep us posted.
Hugs & Stuff,
AA
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I was on Cixivan and then Viread for number of yrs. so I too have PI related kidney dysfunction, right now I'm currently on Travada, so my doctor has reduced that down to every other day, due to very high creatine-levels, so, after all of these yrs. of being on those PIs, I now have 57% kidney failure,
and I'm on a low-sodium-diet due to this, I drink lots of water ( about 10 to 12 glasses a day w/ a hint of lemon juice) it seems to help, right now, I'm stable
.....I'm with Mark, losing the Tenofovir is probably a good idea, so now it's a waiting game to see what your current creatine-levels will be, I also see a nephrologist ( that's a kidney doctor) to monitor my kidneys about every 6 months......at this point I really wouldn't worry too much about this right now....I hope this helps you out some & gives you some info.......Good Luck ;)
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D,
This came through in my email the other day, which I found quite informative. You may find it interesting, There are also two poz casts to view:
http://www.aidsmeds.com/articles/kidneys_12385.shtml
Ray
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Hello all,
Thank you for the info and thanks for the support gentlemen. I'm reading the articles now & will update you when I get new lab results.
Denb45, hang in there. You have been supportive to all of us, and little did we know you need the support as much as any one of us. I hope you don't mind if I say a prayer for you. Please stay well.
Hugs to all, Deiby
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@ deibster Well Thank You :-* we all need the support from each other we get here in these forums ;)
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Hi, I got new lab results. It's not terrible news but it's not great either. I found out that my serum creatinine was up to 1.97 when I was taken off of Viread this June(up to 1.5 is normal for men). It was back down to 1.72 in Sept and 1.71 now in Dec.
My ID doc says kidney damage from HIV meds is not usually permanent, so I'm being sent to a Nephrologist to find out if there is another reason for this level of creatinine. If it is going to stay at this level, I need to know if the kidney doc recommends a change in my diet to protect my kidneys from further damage. I cut down on my calcium pills because they also contain magnesium. I don't take Ibuprofin or aspirin because I have a bruising problem and actually got pneumonia one summer from bleeding into my lungs. If I have a Bad headache (i have allergy & sinus problems) I take one Tylenol with Codeine and so far I only get prescribed 40 tablets per year.
Merry Christmas and a Happy Chanukah to all.
Best Wishes that we all have a Healthy New Year!
Hugs, Deiby
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I always read with interest topics about kidney disease, especially since I'm also diabetic and also on Truvada. I'm going to be interested in what the nephrologist says to you, and also to see if this is really temporary. Look forward to the ongoing saga!
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Hi,
I also had my kidney function tank after being started on Viread. Unfortunately, mine led to complete renal failure, dialysis, and then lucky for me a kidney transplant. My advice is to do exactly what the doctors tell you to do regarding diet and fluids. Don't miss, skip, forget a single medication dose because if your HIV does anything hinky it will absolutely affect the kidneys. Also, pay close attention to your blood pressure. Even a tiny bump up should be watched. They didn't watch mine, and I'm certain it helped push my kidneys over the edge because it stayed moderately elevated for a year.
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Hello all,
I finally saw the nephrologist today. My creatinine is still elevated, 1.7 after being off of Viread for seven months. The doc says that does not require any changes to my meds or diet. The biggest thing is to keep track of my blood pressure (bordering on high when on prescription stimulants), my cholesterol/triglycerides (I'm on pravastatin & Fenofibrate), and Not to smoke. I've never smoked on a regular basis & cut out grass because of my hay fever. If anything, I eat my grass to avoid inhaling the pollen, smoke.
So that's good news for me. I don't have to see the nephrologist for 6 months. She said the very low protein diet for kidney disease is old data & they don't believe that that helps anymore, besides leading to malnutrition in active people. Thanks for all of the support. Hugs, Deiby :D
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Hey Deiby sounds like good news, I see my nephrologist tomorrow, hope it's good news ::)
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Hi all, first post! I seroconverted in 87 and was Dx. with HIV and AIDS on Feb 22, 2001. In 2005, a couple years after starting Kaletra and Viread/Truvada, I was Dx. with cancer of the kidney. After an operation to remove 1/2 of my left kidney(and test my pain tolerance), my Dr still can't say if it was HIV related. I believe it was, but who knows? Badgerdog
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Hello everyone,
I began being monitored by a nephrologist for glomerulonephritis in 2007. My kidney function has been slowly deteriorating ever since. I was told at the time that they didn't know the cause and that antiretrovirals could not be the cause (although I have had most of the protease inhibitors over the years). I have monitoring and lab work-ups every 6-9 months. The dietary advice I was given was to minimize protein intake and reduce or remove sodium intake. I do my best but don't spend a lot of time worrying about it.
I was told that kidney disease is progressive (kidneys cannot regenerate and they cannot clear scar tissue that builds up from inflammation) and that "some day" I would need dialysis and a possible transplant, if a donor match was available. There seems to be no set rate of progression, so right from the start no one could tell me if the need for dialysis would take 5 years, 10 years or ...? Who knows. I take a drug called Avapro (sounds like a dog food, doesn't it? It's also called Irbesartan)
As kidney disease is progressive and irreversible, I'm choosing to not worry about it, let it take its course, and get on with life ... more or less. I live with extreme fatigue and spend a lot of time resting, and in between do whatever I feel like doing. Lots of friends think I could manage a part-time job. I don't look like I'm ill and I try not to make a big deal of it, so they mostly just don't understand. I tend to stay to myself a lot now. Good thing I like reading, music, and other quiet pursuits.
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Pyxye,
I know from extreme fatigue; I had it before I started hiv meds. If your blood pressure is normal, I would suggest that you see a doc for prescription stimulants. I'm on Concerta (time-released Rytalin) 36 mg., which is generic now & not too expensive.
Are you a client at a local ASO, AIDS services organization? They can help you finding doctors. You may need a psychiatrist to get the stimulant RX. You are Too Young to be a fatigued recluse. I hope you get involved in some hobbies, the library, outside of the house. :)
Hugs from Provincetown, Deiby