POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: Clara zetkin on April 22, 2013, 01:10:00 pm
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Hello,
ok – first let me say that I have been following this blog for many years (I would at least 9). Never have I written before but “know” many of you (especially long-term survivors). I always come here when I have doubts but also sometimes just to check how everyone is doing. :)
About myself: I am a “friend” of and live with a person with HIV (he also has HCV) who has had both of these conditions for many years now. He is 45+ and has had the conditions since when he was about 25. We live together. I love him.
Regarding my "friend"'s HIV condition, he has been on the same medications for 14 years: viramune + Kivexa (abacavir and lamiduvine). He was on treatment for a year before this but then stopped for another year (treatment interruption). The one year's combination included combivir, I think, and prior to that he had to stop a treatment because of anemia (o maybe it was the combivir that he had to stop as I know AZT can cause anemia...). In his 14 years treatment, he never had a problem (well, sort of – see P.S.); good CD4 and undetectable VL. His last CD4 (6 months ago) was 1200 31%. However, a test about 2 months ago showed a VL of 200 & something. The test was repeated to see if it was a blip (he had one other blip 6 to 12 months ago of about 400...) but it came back positive again: VL at 70. The doctor changed his viramune straightaway, as she said viramune can develop resistance quickly, and replaced it with Duranuvir and Indinivar.
Now, on repeating the VL a month later, it was still detectable at 490. (All other results, except the Gamma, were within normal limit. CD4 will be retaken at next visit...Rationale for not taking CD4: Doctor said she was not concerned with it being stable for a very long time). About the VL, she was puzzled as were we ???.
He is 99.9%, if not 100%, adherent; always has been and I had previously read these new drugs were quite good... So was/were very hopeful...
But maybe it would have been better to change all medications instead of the viramune only? Doctor suggested to repeat the test in about a month and taking it from there. She justified it by saying that we might end up chasing numbers otherwise and was more relax in terms of these new drug's resistance profile... I think this is wise.
But what do you guys and girls think? Do you have any suggestions? Any things that you would do or ask at the next visit? Note that he was under a very stressful period copying with losses in the family :(; although the doctor said this should not have had an impact...
Ah, one more thing, she did run a resistance test but it come out negative; no resistance was found (but maybe there was just too little virus in the blood(?))
Sorry for the long message and thank you very much to you all in advance for your advice.
Clara Zetkin (not my real name...but a good one nevertheless, me think!)
*[[Well, no problem apart from high cholesterol (which he was able to manage with statins first and then by stopping smoking and eating better...still on the high side but not v. concerning) and a quite high Gamma GT. This is worrying. But he has had this high value for a very long time (at least 10 years. It was lower for a few years but now ranges between 500 and 600). He never had a liver biopsy – he does not want to do one... [I know...it’s hard sometimes but I have learnt to accept we all have different outlooks things...]) – but has had a fibro scan a couple of years ago which showed no fibrosis. He is due for another one in 2 months. All other tests within normal limits]].
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Hello,
me again. I know this is a tricky question... :-\ but anyone willing to put his/her own two cents in?
What would you do?
Thank you.
P.S. ah one more thing, when I said problems I, of course, meant blood test reading pr not physical ones...
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Hi Clara and welcome to the forum , Im sure somebody will come along and answer your question for you . I wish I could be of more help but this area of expertize is handled much better by a few other members who hasn't seen your post yet .
Im sure they will notice and give you the answers you seek soon .
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No problem. Thank you for the welcome and for replying to me Jeff.
I will wait patiently for someone to chime in...
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Hi all,
me again...I know...and will not post anymore for at least a few weeks.. ;).... But we really value your comments and would very much appreciate your suggestions before our next meeting with the HIV consultant (in about 4 weeks time).
Anyone willing to "advise" us?
Newt? (I am asking you because you seem to have really great knowledge about these type of things. ::) But of course we appreciate comments from anyone!! :)).
Thank you and a virtual hug.
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Well as I see it, there are a ton of other medication options available to the person. Is there a reason he can't just switch to a new combo?
I have loads of friends who are long term survivors, and many of them stay on antiquated combinations until things get dicey - from lipo to crazy lipid levels and other stuff. I don't know where you are, but is there a reason why a new combination can't be tried?
Sorry, I am not Newt, but I have been on a bunch of drugs for HIV and though my current combo is doing great things for my viral load, it's not nearly as nice for my lipids and blood pressure as I would prefer. At the end of the year, some new drugs will be out and perhaps available through Medicare, and I find myself in the position to be researching new combos to deal with these issues.
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Thank you for your reply Jkinatl2! Really appreciated.
I know there are other medications out there and to tell you the truth I am not sure why the doc did not change his combination on the last visit...Maybe she did not want to make a new change to his regime too quickly also because of the things he is dealing at the moment - (loss of his mother and other losses in the family...). But if his viral load continues to raise, I think there is no really other options. And maybe it's just worth changing even if it remains the same...! I tend to think that this will be the right thing to do. I am just unsure about cross-resistance and what his options are. I suppose we have to trust the doctor on this one.
It's (always) good to know new drugs are coming out and hope that once this happens you find a combo that works for you and that does not cause you too many side effects.
Thank you again and take care.
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Hello
I am unclear in my mind why exactly your doc changed the combination in the first place. A viral load of around 400 followed by 70 is not a rising viral load.
Up to 50% of blips are down to lab errors. Find out if there are new machines at the lab, or new people doing the tests. Ask the doc if many others have had a similar experience.
Daranuvir and Indinivar is not a useful combination. Indinavir is an old drug no lon ger used, really. Darunavir is given with a small dose of Norvir as a booster, which makes the darunavir last in the body a long time. I am hoping you really meant Norvir not Indinavir...
How the gut absorbs drugs can affect drug levels, so any GI problems need sorting.
The doc can measure drug levels with a test call TDM (therapeutic drug monitoring) and if necessary up the dose of the darunavir (or change meds if none at all is measured, occasionally people's bodies just won't accept a particular drug).
Food is important with darunavir too, you mus take the meds with some.
Using darunavir 600mg 2 x day rather than 800 mg 1 x day dose is probably a good idea.
Swapping the Kivexa for Truvada might help. It would be common to consider making this swap.
Adding Isentress (raltegravir) might help too (will help rather than might, I would bet).
I am inclined to believe the resistance test results. A viral load around 500 is enough virus for an informative test.
Since resistance emerges slowly on darunavir you have time to check this out. Many months.
There is a phenomenon where people with suppressed virus get a series of blips and then everything settles down. Something of a mystery. It doesn't seem to affect long-term outcomes or generate resistance.
Hope this helps
- matt
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Matt, this is very helpful! I cannot thank you enough.
About the change, I think the doctor was concerned about Viramune as she mentioned that resistance to it can develop quickly and she said “considering that he stayed quite a long time on that regime"...I think she thought this was a prudent strategy.
Anyway, I’ll certainly ask her to do a TDM test if the viral load is still detectable at the next visit, as well as mentioning the possibility of using Daranuvir 2 x day and of swapping Kivexa for Truvada!
I also ask about the possibility of adding Isentress.
(He does take Daranuvir with food but perhaps not as strictly as he should (sometimes after half an hour)...GI problems, yes...but not that much. However, I suppose we are all different and the problems he is having might be enough for him...the TDM test should tell us that).
The doc mentioned that she was seeing an increase in blips lately and that the people at the lab test wanted to count viral load under 20 (where undetectable = <20) but they refused. But she did not say anything about new machines or people. I’ll ask this too.
We’ll let you (all) know how things progress.
Thanks all and take care,
Clara
P.S. yes Norvir not Indinavir (not sure where I got that from... ???).
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to count viral load under 20
hmmmm....
Strictly speaking 20 or under is undetectable.
UK uses under 50. There is good reason, since there is evidence that under 50 on viral load indicates the virus is fully supressed and doing nothing. So, in which case, what is the point of counting lower?
One of the tests that measures down to 20 is flaky and when it was used in the UK docs were counting 200 or less as undetectable, and seeing lots of blips in the low hundreds...
The manufacturers have corrected the error, but there's nowt to say labs didn't buy/aren't still using an older version.
If the doc is seeing lots of blips in patients with a long record of being stable with suppressed virus, I, personally, would suspect the lab, especially if adherence has been, as you indicate, nigh on perfect.
- matt
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Yes, here at this hospital (UK based) they use the under 50 mark.
I suppose we'll have to ask her again about the alleged increase in blips to make sure we understood it correctly. It could have been just a reassuring thing on her part (i.e., there are others in your situation; don't worry).
Anyhow, this is interesting and, as always, v. useful.
Muchas gracias! :)
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Hello everyone,
I just wanted to update you about my “friend’s situation. The msg is for those who have helped me and those who might be interested and/or might have similar problems.
At his last visit (last week), his viral load was still detectable at 200; so less than last time (400) but not enough to make a real difference, the doctor said. Also, because she was still unsure about what to do next, and also because I thought they were very valid!, I mentioned Matt’s suggestions to her. Ok, at first she was a little taken aback but then come to the view that to change Kivexa for Truvada was worth giving it a try; although she wasn’t too keen in changing the Darunavir dosing and in adding Raltegravir to the mix as yet. These, she said, are all possible options but maybe in a later time. He has started the Truvada today.
What she said she would do is the TDM test (and this is also the reason why I did not want to press on the twice a day Darunavir for now...as I thought the test will tell us whether is absorbing the drugs anyway). And she also mentioned the possibility of doing a further resistance test later on – a test that she says check for minimal resistance and you do not need to have lot of virus in the blood.
Now, I have one more question about Truvada. Reading here from some of you who say they are not having nice CD4 results, I am a little concerned about it. But should I be? Or is it just that, as for every drugs, they work for some, whist for others they do not?
Ah, one more thing, his CD4 was not taken...I know!! I think it is about time and thought they were going to check it this time (that was what the doctor said last time; it has been 6 months from his last count..). But the doctor stressed again that she is not concerned about that. In any case, I will make sure it’s taken next time.
All the very best to you all,
Clara
ps. Apart from the long term survivors, can I comment on other forums? Thanks.
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Hi Clara and thanks for the Update , you are a rare and true friend .
As a caregiver you are allowed to post in this forum and off topic , off topic is an HIV free zone when it comes to discussion .
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Thank you for your quick reply Jeff. You always make me feel welcome here. ;)
I might post in the off topic then sometimes...some interesting topics there too.
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Thank you for your quick reply Jeff. You always make me feel welcome here. ;)
I might post in the off topic then sometimes...some interesting topics there too.
:)
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Hi Clara.
I merged your new thread with your original thread - for the simple fact that I had to go back and read it again to know what you were updating us about. Having the whole story in one place will make it easier for people to reply.
Your partner's CD4 (at last count) was more than respectable. The most important number while on meds is the VL - provided the CD4s are above 200, and his were 1000 above that mark. That's why the doctor isn't concerned about his CD4s.
Don't get me wrong - I totally understand wanting to know. It would drive me bonkers if my doctor wasn't regularly checking my CD4s. Some doctors don't seem to understand how important knowing those numbers can be to our emotional well-being.
I hope things work out well concerning his VL, TDM and his meds. Good luck and please do keep us posted.
Ann
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Hello Ann! and thank you. I appreciate you taking the time to do this for me and reply (while reassuring me).
As for keeping you posted, I most definitely will.
As I said before, I think this is an excellent forum! [been reading it for a very long time...] (also, I believe, in part thanks to the work that administrators and moderators put in ;)).
Ciao,
Clara
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Hello Ann! and thank you. I appreciate you taking the time to do this for me and reply (while reassuring me).
As for keeping you posted, I most definitely will.
As I said before, I think this is an excellent forum! [been reading it for a very long time...] (also, I believe, in part thanks to the work that administrators and moderators put in ;)).
Ciao,
Clara
Hi Clara!
Sorry for a very delayed welcome. :-[
Your posts have been so kind and considerate.
You seem to be so well informed and learning in depth for someone you care deeply about.
Nice that you joined us. :)
m.
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Ok - edit to my previous post where I talked about Truvada.
What I should have said is:
Now, reading here from some of you about not having nice CD4 results on Truvada, I was a little concerned about it. But I also read here and elsewhere of others having very good results on it...! So, I suppose, the concern comes with the uncertainty or unknownness of change more than having thing else...(although as the doctor said, he always has the possibility to go back to Kivexa ;)).
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Hello Mitch! no worries :D and thank you. I feel welcome. :)
C.
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You're welcome, Clara, and thank you for your kind words.
Regarding Truvada, most people have an excellent response to it. There's no reason to suspect that your partner won't.
Ann
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:) Thank you Ann.
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Hi Clara,
I have been on truvada since I started meds(2006) and its the only drug I haven't had to switch one that I have tolerated very well with a cd4 count of 900, 45%.my numbers have climbed slowly but the percentage has climbed steadily. I hope that helps.
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Hi Jessy,
yes - it's reassuring. Thanks!
Also, a further update (I was waiting for his complete blood panel results due tomorrow...but given that I am here...):
Results of the TMD test were ok. He was over 500 (670). Doctor said this was good for a not very experienced patient like him (a very experienced patient need to be over 1000; a naive over 50...He did the test 24h after taking his medications). She nevertheless suggested that perhaps "my" (well Matt's idea :))) to up the darunavir to twice a day could be an option.
Well, we’ll see how his blood test - a complete blood panel – goes and take it from there. (She also did a urine test to check his kidneys as he is on Truvada).
By the way it’s been 12 months since his last CD4 count not 6 months. He has been over or around 1000 for a few years and the VL is not high...Still, we of course are a little concerned...
Ok - speak again very soon. Thank you for reading and again to all who have replied, even if just to welcome me.
Clara
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Dear all,
later than said :P but here I am.
Unfortunately, I do not have my 'friend's full blood panel results (nor the results of his urine test) as his doctor was on holiday and I had to call to get his VL’s and CD4’s levels. I assume there are no major issues, as they usually call if there are and a new month prescription has been issued.
Anyway, I am happy to report that, although his VL was still detectable at 100 something, his CD4 was still over 1000. So his CD4 does not appear to have changed or in any case not to have changed much...
We’ll see what happens at the next visit in a month time and whether it is worth upping his darunavir dose to twice a day as Matt has suggested.
For now, I wish you all a good weekend.
Thanks for reading.
Speak soon,
Clara
ps. I cannot but help reaffirm what a great forum this is....!
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I personaly wouldn't worry if viral load stays under 200. 200 used to be "undetectable" a few years back. Short term, if consistent, it will not hurt. Some fok never achieve an undetectable viral load. CD4 count is so very good. There will be new drugs soon that may be worth trying if viral load rises, say, over 500. - matt
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Thank you Matt. That is appreciated and reassuring.
Clara