POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: guitargal on January 26, 2014, 12:06:11 pm
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who here has a low GFR? mine was 43. now 39.
i did a 24 hr urine test last October.. they say it was fine.. they may have me do another.
apparently my GFR has been as low as 42 for the past 5 years and no one was concerned and i was not informed! and they kept me on tenofovir and or reyataz..the worst !
i am upset , very upset !
i was never informed , educated about kidney function tests or given a urine test in the past..
is this the cause of my severe bone pain? from what i read it is.
thanks
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GFR MDRD Af Amer
GFR is estimated using creatinine, age, gender and race. Patient's values should be interpreted as a trend. Between 30 and 90 mL/min/1.73m2. I don't know what test they gave you but it would still be in the normal range if you scored a 39. Don't get yourself hung up on numbers it will drive you nuts.
GFR MDRD Non Af Amer same guide lines as above. Make sure you are looking at the results from the previous tests.
My Af Amer was 71 and the Non-Af Amer 59
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Hello & Welcomed :)
like RapidRod told you, don't worry to much about numbers ;)
I've had Renal insufficiency for about 16 yrs. now, my GFR is at about 40 to 60 and my current creatine level is 62
normal range is about 30 to 90 for GFR or somewhere around that
I've had to change meds every few yrs. ( due to resistance) as I've had HIV/AIDS for the last 28 yrs.
so don't worry too much about any of this, my level never really changed any at all
even with any new meds, just make sure you FLUSH, meaning, drink plenty of water
to keep your kidneys healthy ( that is what my current Renal docs tells me)
hope this helps
HUGS
DEN
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Welcome also.
I agree with what has been said and have plenty off first hand experience off events both good and bad that go against what the numbers indicate. Beginning off Dec had the best CD4 in years mid Dec hospitalized . Hey-ho
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thanks for your info..
I thought that a GFR below 60 for an extended period of time means poor kidney function.
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thanx for the pep talk..
they want me to see a nephrologist because of protein in my urine. Creatine 53.
i am upset as i kept questioning about being on tenofovir and when i got my labs for the past few years and charted my GFR my kidney function kept decreasing..no one ever did a urine test all this time.
they said nothing was wrong, kept me on tenofovir now all of a sudden a nephrologist.? !
I really am very scared.
was doing fine for 20 years.. i am 52 and my fatigue /pain started just before i turned 50.. i then went to multiple doctors in search of an answer and no one checked my urine..
oh yes they did and they checked for drugs without telling me (I am not a user, the drug screen even had PCP! WTF!)
when i thought they were looking for blood or protein or sugar..
now he says it is because of my hep c that the kidney is off and that it usually happens to black men,, i am a white woman.
i have no idea what they are talking about
Membranous nephropathy
does something like this happen all of a sudden..why did they not see warning signs.?
thanks
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perhaps you were kept on tenofovir this long because you are a LTS and may have a complicated drug resistance profile -- we aren't your doctor and are not privy to either your full medical profile or his/her decision making process. Did you ask him/her these questions?
There's not reason to be "really scared" when you haven't even gone to the specialist yet. Usually they catch these things early. I just had to go to have my liver checked out after a year of not-so-great readings and in the end the results weren't bad and I've not had to make any changes. That doesn't mean I won't in the future but there's no reason for me to put up a fuss before that time arrives.
And so what that they checked your urinalysis for drugs -- they probably checked for chlamydia and gonorrhea as well. You've been HIV+ for over two decades and surely know the demographics of the general set of patients. Doctors should do such tests, not to give morality lessons because of the results but to have a full picture of any complicating issues. I fail to understand why you take such vigorous offense to this and have made it personal.
Whether or not these should have seen warning signs of this I can't say. I have had four HIV doctors over 20 years. They did routine urine tests in the 90's, then from 2001-a few years ago I was rarely given one. Sometimes only annually. Lately my doctor conducts them every time but I think it's not due to clinical reasons but because there is a bad chlamydia outbreak in the region that I live in and the Dept. of Health may be requiring it.
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thank you miss P. i will remember to look at all aspects.. good news
i was told just a few years ago i have a lot of med choices, not much resistance..yeah!
the urine drug test in 2012 was the first urine test that was ever done in 20 years. !
I was really ill with extreme fatigue bone and muscle pain..could hardly care for myself..and they didn't know what was going on.. so i peed in the cup and i thought they were looking for a reason why i was sick. they never checked for blood protein sugar chlamyidia , nothing..
so after they didn't know i switched doctors and that one said i was totally healthy. just slight elevated liver enzymes.
finally in the fall of 2013 i had a real urinalysis done. and a follow up last month.
just shocked that i have reduced kidney function and never knew it.
i got my lab records for the past 5 years and all have shown reduced GFR and it was never mentioned to me. steady decline . never in the normal range…
now i am off Tenofovir and making sure i get good fluids and see what the specialist says. I wonder if they do a sonogram or mri or something..
thanks for the support. !
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Gal, I've been following your posts but I didn't realise until yesterday that you are also dealing with hep C*. Many of the problems you are experiencing can be caused by untreated hep C, particularly the fatigue and joint/muscle pain.
I know because I've been there. I was successfully treated for hcv in 2002/03, but I remember all too well how ill I always felt while still coinfected. I had to take several naps each day and I also had to use a walking stick because my hip joints were so painful. My finger and toe joints and back were bad as well, and I used to ache all over on a daily basis. In addition, brainfog was also a serious problem for me.
Have you looked into treating your hcv? If not, why not? It's not the easiest treatment due to side effects, but if you achieve a cure (called a sustained response in medical parlance) it's well worth the (temporary) pain and discomfort. Also, there have been big improvements in the past two years where treating hcv is concerned, with a much better success rate and a shorter treatment duration.
About your doctors - I can tell you through first-hand experience that many doctors and other health care professionals can be extremely judgemental when they find out you have hcv and this all too often can result in them not delivering the best care they can. I lost count of the times I was treated like dirt once a doctor found out I had hcv (and it still happens occasionally today). So, I have to wonder if some of the (what appears to be) negligence on the part of your doctors has stemmed from bad attitudes towards people with hcv.
You may want to check out our sister website that deals with hepatitis - http://www.hepmag.com/ HepMag has all the up-to-date hep C treatment news.
The HepMag website also has a forum - http://forums.hepmag.com/
You will have to register for an account at those forums, as your account here will not work there. Their forums aren't as busy as ours are, but there are some very knowledgeable and helpful people who post there.
*As I said, I've been following this thread but haven't responded up to now because it's in the LTS forum and I'm not an LTS, although I've been poz since 1997, diagnosed in 2001 (was hcv poz from 1984 to 2003, diagnosed in 1999). However, being a forum admin has its perks so I do occasionally post here when I think it's important enough. ;)
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thanks, Miss P ,
just last month i discussed the new treatments with the big city docs.
i was waiting for the new meds, out now , that have like a 95% success rate for my type 1a
so i am trying to decide if i should do it now with interferon,
thinking by the end of the year, more new meds and the treatment will be interferon free.
odd how the MD is trying to tell me my kidney issue is because of the HEP C.
i have lived a very healthy lifestyle for 25 years and my HEP C is not so bad (the new fibrosure test was ok and other liver function tests good)
so i need to figure out if i should do this treatment now with interferon , only 12 weeks ! or wait and what is up with my kidneys. (woke with back pain today, new.. freaking me out wish they would do some imaging and see what is going on with my kidneys.)
of course i just started hiv meds that do not play well with the HEP C treatment.! ugh.. got to get this straightened out.
thanks. glad i started connecting here. i used to just read some of the posts and not write.
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thanks, Miss P ,
:o ~shock horror~ :o I'm not Miss P! Not even close! I'm MUCH more fabulous! Better looking too, I might add. ;D
I think it would probably be best to get your kidneys sorted out first. That may happen sooner than later and you'd still have the option to try the newer treatments that still include interferon. After all, the treatment doesn't last forever and while it might make you feel worse for a while, you'll most likely feel much better in the long run. I know I certainly did. Also, I don't think the new interferon-free treatment is not without its own side effects. It may be better to deal with a treatment that is better known, but that's just my own opinion. Better the devil you know and all that.
I'm really glad you started connecting here too, and I'm also glad that you're getting better medical care now. Make sure you also check out the community over at HepMag. :)
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Thanks Ann!
Hopefully I can get that kidney consult soon. I still do not have an appointment with nephrology! and really do not want to wait any longer to get started with their assessment. urgh...
It may be that my kidney issue is the hep c and i need to find out if they think i should go ahead w/ treatment for that now rather than later.
Also being off Stribild now may slow down any damage..i was told the cobicistat in that is what may harm the kidneys.. hummmmm..