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Author Topic: starting to panic !  (Read 3480 times)

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Offline mike

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  • Posts: 30
starting to panic !
« on: June 19, 2006, 05:55:44 AM »

I just got my lab results back and to say i am worried by the results is an understatement.

My CD4 % is now lower than it was before i started treatment( december 2005) ( 4.9 % compared to 8 %  and a high point of 11.8 % six months ago), my CD4 count has also fallen back from a high of 177 (late january) to 98 and has been decreasing steadily for the last 6 months. i suppose the viral load is still undetectable though as it has been since january.

To make matters worse, the renal expert at the diabetic clinic i attend says that apart from creatinine steadily rising, my kidney function is at 60% which is borderline stage 1 of chronic kidney disease.i can see the effects of this on my face as i have dark rings underneath my eyes which i attribute to kidney problems as i have been sleeping fine.

On the positive side, my weight is still increasing and i am now at 68 kg which is 10 kg more than my low point last november.

I know that the drug combination i am taking is hard on the kidneys, especially the kaletra-viread combination and i know this is exacerbated by the addition of tenofovir. With hindsight, it obviously wasn't a good idea to take this combo given the current results.

I have read that kidney toxicity problems cause CD4 counts to fall drastically and assume this is the reason for my discordant lab results.

Any advice would be greatly appreciated to stop me from having panic attacks !

Offline Matty the Damned

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Re: starting to panic !
« Reply #1 on: June 19, 2006, 06:03:03 AM »
Hi Mike,

Tenofovir does have a track record for kidney problems. My kidney's are fine, but when I took it I had unusual kidney function test results. Nothing serious but just outside of the normal ranges. My advice would be to have your HIV specialist or prescriber review your regimen. It sounds as if your developing some pretty serious renal disease and tenofovir is not a good thing for you to be on.

I'm sorry to hear about the decline in your CD4 %. I know it's really hard not to panic at this time, but it's not going to help you. You need to take all of these concerns to your doctors. Does your renal specialist discuss your case with your HIV specialist? Are they one and the same?

Best wishes,

MtD

Offline Markmt

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Re: starting to panic !
« Reply #2 on: June 19, 2006, 06:18:41 AM »
Hi Mike, I do not have any advise to offer, but  Matty sums it all up. I am sure you  will be getting even more advise. Work closely with your doctor. Keep us posted,

hug,

mark
"Live to love and love to live."

Leo Buscaglia

Offline jack

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  • fomerly the loser known as Jake
Re: starting to panic !
« Reply #3 on: June 19, 2006, 07:07:26 AM »
I would be changing drugs or doctor asap.

Offline newt

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  • the one and original newt
Re: starting to panic !
« Reply #4 on: June 19, 2006, 07:25:48 AM »
Hi mike

You seem to be in a particularly vicious circle.  A proportion, say 10%, of people experience falling CD4 with falling viral load. The decrease in kidney function may not be down to the Viread, but progression of HIV-related damage to your body, despite an undetectable viral load in your blood.   Poor kidney function makes you ill, cos basically your blood is toxified and yout get dehydrated, which is not good for the immune system.... People with poor kidney function often have low CD4 counts, no-one is quite sure of the relationship between the two though

It would be prudent to either switch the Viread or have the dose monitored closely using a technique called therapeutic drug monitoring (TDM), not common in the US but free in the UK.  Since Viread is mostly cleared by the kidneys, it is possible to use a reduced dose and still achieve an effective concentration of the drug (perhaps even, 1 x week dosing...) But switching may be simpler. 

Your doc should certainly screen for diabetes. Kaletra often affects lipid and sugar metabolism, and this can lead to diabetes which contributes to poor kidney function. There may be a case for swapping the Kaletra for a kinder PI, like Reyataz.  Indeed, Reyataz may be a good choice if you drop the Viread because you can use it unboosted, without Norvir, and this drug is kinda hard on the kidneys.  Norvir is included in Kaletra, a low dose overall and normally this wouldn't be a problem, but with a reduced kidney function it is an extra stress. 


All the best

- matt
"The object is to be a well patient, not a good patient"

Offline mike

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Re: starting to panic !
« Reply #5 on: June 19, 2006, 07:57:13 AM »


Your doc should certainly screen for diabetes. Kaletra often affects lipid and sugar metabolism, and this can lead to diabetes which contributes to poor kidney function.
- matt


thanks matt but i have been diabetic since i was 10 years old, almost 30 years and counting, on 4 injections a day. i think my kidneys would be damaged to some degree without the added HiV problem.
i can deal with erratic cd4 counts but not a cd4% fall from 11.8 % to 4.9 % especially when i had 8 % and a cell count of 49 when diagnosed before starting treatment.
as in most cases, the renal specialist doesn't interact with the HiV specialist, he doesn't even have access to my HiV hospital records as they are strictly confidential despite the fact i have no problem disclosing the info. this means any info they get is via myself and that is kind of frustrating. this is the first year they have even bothered to check out my kidneys on the diabetic side of things !
i am in the UK.

Offline Matty the Damned

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Re: starting to panic !
« Reply #6 on: June 19, 2006, 08:04:27 AM »
thanks matt but i have been diabetic since i was 10 years old, almost 30 years and counting, on 4 injections a day. i think my kidneys would be damaged to some degree without the added HiV problem.
i can deal with erratic cd4 counts but not a cd4% fall from 11.8 % to 4.9 % especially when i had 8 % and a cell count of 49 when diagnosed before starting treatment.
as in most cases, the renal specialist doesn't interact with the HiV specialist, he doesn't even have access to my HiV hospital records as they are strictly confidential despite the fact i have no problem disclosing the info. this means any info they get is via myself and that is kind of frustrating. this is the first year they have even bothered to check out my kidneys on the diabetic side of things !
i am in the UK.

Mike,

I'm in Australia and here HIV records are guarded with a similar ferocity. I have severe epilepsy (unrelated to HIV) and am under the management of a neurologist. When I was diagnosed with HIV, I gave written permission for my HIV specialist, GP and neurologist to share whatever information they needed to with each other. Given the potential for anti-HIV drugs to interact with my epilepsy medicines this has proven to be quite important.

Is it possible for you to make similar arrangements in the UK? Given the seriousness of your health problems, I would think that your various doctors working together is imperative for your well-being.

Fondly,

MtD

Offline newt

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  • the one and original newt
Re: starting to panic !
« Reply #7 on: June 19, 2006, 10:23:28 AM »
Methinks a bit of bum-kicking of doctors is on order..

At my UK clinic glucose and kidney function tests are routine for all people on treatment.

The dose adjustments for Viread by creatine clearance are in the prescribing information insert in the box.

Really, some kind of discussion you'd think between the two docs would be in order under the circumstances.

You might ask your doc about the merits (or not) of IL-2 to boost your CD4 count. An IL-2 report: IL-2 effectively increases CD4 count in people with low CD4 nadir and another one: PREDICTORS OF CURRENT CD4+ T-CELL RESPONSE AMONG PATIENTS RECEIVING SUBCUTANEOUS RECOMBINANT INTERLEUKIN-2 (RIL-2) IN ESPRIT (EVALUATION OF SUBCUTANEOUS PROLEUKIN® IN A RANDOMIZED INTERNATIONAL TRIAL)

Bum-kick....


- matt
"The object is to be a well patient, not a good patient"

Offline aztecan

  • Member
  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
Re: starting to panic !
« Reply #8 on: June 19, 2006, 11:20:45 AM »
As Matt said, time to kick your collection of docs in their collective butts. Even those without your history of diabetes should be monitored regularly for blood glucose levels because many of the meds can cause renal problems.

The problem of getting doctors to share information seems to be common. Sometimes it is like pulling teeth to get one doc to talk to another, even with written releases in place.

The problems you are having are a perfect example of why this is just plain stupid. I hope you can arrange for your various physicians to communicate with each other, as Matty suggested. That sounds like something that needs to happen.

Hang in there.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline mike

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  • Posts: 30
Re: starting to panic !
« Reply #9 on: June 19, 2006, 02:27:06 PM »
thanks for all the support guys, i appreciate that
- my HiV doc has been talking about switching me from kaletra to nevaripine for 4 months now because of the side effects but hasn't got round to it yet.
- doctors not communicating is very frustrating, where i live, the regional hospital has a system where the HiV department has a totally separate admin function and even uses a separate computer database meaning neither of the doctors can even access my lab results from the other side.

i understand the confidentiality but it is maddening when you don't want it yourself and have to write everything down as the doc speaks to you to pass to the other one.

i've only been diagnosed HiV positive for 7 months so have been slightly in awe of what the doctors tell me and passive in my response to them but i think you are right, the time has come to kick some butt and demand some changes before my kidneys and immune system pack up together and go on permanent vacation.

Offline allanq

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  • Posts: 689
  • still life with pills
Re: starting to panic !
« Reply #10 on: June 19, 2006, 03:11:21 PM »
Mike,
Several months ago, my lab tests showed a sudden jump in the creatine level. For years they had been around 1.3 or 1.4 (1.4 is the upper range of normal for my lab). Then they suddenly jumped to 2.1. Two subsequent tests came in at 2.2, so it wasn't just a lab anomaly. It was very strange, since I had been on the same regimen for over 2.5 years.

My doctor told me to discontinue the Viread. The creatinine level started going down. Then a kidney doctor told me to stop taking Tricor (for high triglycerides) and my creatine has gone back down to 1.4--not as low as I'd like, but a lot better than 2.2.

I'm not sure what drug you can substitute for the Viread. I've heard of people switching from Viread to Ziagen when they can't take Viread. (In my case, I just dropped the Viread, since I'm on three other drugs.)

Can you get copies of your lab reports when you visit each doctor? Then you can make an extra copy for your other doctors. The lack of communication between doctors sounds frustrating and counter-productive.

You mentioned the dark rings under your eyes being related to kidney problems. I haven't heard of this. Do you know anything more about this connection?

Good luck to you.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline newt

  • Member
  • Posts: 3,885
  • the one and original newt
Re: starting to panic !
« Reply #11 on: June 19, 2006, 07:52:26 PM »
UK people should know about the i-Base treatment phoneline ("Putting you in control of your HIV treatment with the most up to date information explained in non- technical language") - free, confidential and staffed by HIV-positive people whose advocates kick doctors in provincial hospitals into shape, or give you good tips on how to do it yourself.

- matt
« Last Edit: June 20, 2006, 11:09:24 AM by newt »
"The object is to be a well patient, not a good patient"

Offline mike

  • Member
  • Posts: 30
Re: starting to panic !
« Reply #12 on: June 20, 2006, 04:13:45 AM »
allanq : dark rings under the eyes is a common sign of kidney problems / toxicity but of course other problems may lead to dark rings under the eyes also, it's almost like an old wives´tale but as far as i know it is true (baggy dark patches under the eyes). I don't know what the various bio chem readings mean really as like most things, we use different measuring standards on different continents, my creatine for example has increased from 104 to 122 and now 130 but that doesn't seem to be the same measuring system that you use. They also told me that my urea levels had jumped but when i asked what that was, they just said "something your kidneys produces" oh well, back to internet.

newt: thanks for that excellent link, despite trawling the net for almost a year on HiV stuff, i hadn't come across that so will definitely check it out.
« Last Edit: June 20, 2006, 04:15:54 AM by mike »

Offline allanq

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  • Posts: 689
  • still life with pills
Re: starting to panic !
« Reply #13 on: June 20, 2006, 04:02:04 PM »
Mike,
I checked a UK website on kidney diseases and found that a creatine level of 130 micromol/litre in the UK is the same as a result of 1.5 mg/dl in the US. By US standards, this means that your creatinine level is just a little above normal. As I mentioned, before I stopped the Viread and Tricor, my level was 2.3, which would be equivalent to a UK reading of 197.

Here's the website: http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/kidneytests.html#Anchor-Creatinine-23240

I hope this helps.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline mike

  • Member
  • Posts: 30
Re: starting to panic !
« Reply #14 on: June 21, 2006, 03:31:07 AM »
that's a great help allanq, thanks, you guys absolutley amaze me with your support and assistance  ;D

Offline mike

  • Member
  • Posts: 30
Re: starting to panic !
« Reply #15 on: July 08, 2006, 07:11:26 PM »
UPDATE:

sorry to bump this old topic but i wanted to let you guys who have been helping me know what is going on

- i saw my hospital doctor ( a new one ) and he said he would not sanction use of IL-2 as it was still too "experimental"

- he switched me from tenofivir to kivexa ( abacavir-lamivudine) but said they could not do the sensitivity test as it is too expensive ! kept me on kaletra though

- strangest thing was my latest lab results they did last week,

- my CD4 count after falling from 177 to 98 over 6 months has suddenly gone back up to 174

- my percentage has risen back up to 13 % after falling from 12 % to 4.9 % last time

I'm beginning to think they made a mistake with the penultimate tests, i don't see how my % can go from 12 to 4.9 and then back up to 13 inside a month !

I started the abacavir today so fingers crossed !

Offline Matty the Damned

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  • Ninja Please
Re: starting to panic !
« Reply #16 on: July 08, 2006, 07:46:45 PM »
Mike,

Thanks for the update!

MtD

Offline newt

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  • the one and original newt
Re: starting to panic !
« Reply #17 on: July 08, 2006, 07:59:55 PM »
Okay, good, screwed lab result I reckon, bummer of time to have it.

Good luck with the Kivexa, only a fraction of people get a bad reaction, the definging feature is fever, not rash.  Any flu/cold-like symptom call the clinic.  Otherwise it's a damn goodie (as goodie nukes go), relatively side-effect free drug n a bit stronger than tenofovir/Viread too.

"Too expensive" ha! Next year I hope the abacavir sensitivity test will be standard of care in the UK, at least on paper

- matt
"The object is to be a well patient, not a good patient"

 


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