POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: buffaloboy on February 25, 2010, 05:02:47 pm
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Hi,
After several bouts of strep pneumonia and a falling CD4 count, I finally started HIV treatment for the first time last October. This was with Atripla and it was an unmitigated disaster as far as the central nervous system side effects were concerned and after three weeks of feeling as if I was losing my mind, I stopped. Thankfully, I returned to relative normality, within a few days of stopping the treatment and the sense of relief was huge.
Now the problem here is that I've had a number of traumatic experiences with the doctors at my clinic and I just haven't gelled with anyone. I come away feeling really upset, and I never feel as if I;m being listened to I was quite cross when my most recent doctor said he was 'surprised' to hear that I was suffering on Atripla as most patients tolerated it well. I felt as if he was saying that I'd failed the treatment rather than it failing me. And how can a doctor be 'surprised' when the component in Atripla, Sustiva, has been on the market for over a decade and the side effects well documented.
The doctor who prescribed Atripla wouldn't discuss the side effects with me, and told me to 'speak to the pharmacist' where you have to stand in line in a public area of the clinic. And I also had another experience where an emergency clinic doctor lost her temper with me, told me I was suffering with lipoatrophy (am I?), and then ordered me out of her office.
I've seen a doctor a couple of times since I stopped Atripla and he wrote down some alternative combinations on a Post-it Note, that when I came to look at it home, made no sense whatsoever. And I just don't feel comfortable going back to him to ask to go over it again as I sort of feel like the dumb kid in the class.
Anyway, today, out of desperation, I rang the clinic which diagnosed me in 2005, and asked to make an appointment with a doctor I'd met previously, but she is booked up until April. And, whilst I'm not actually ill, I feel absolutely EXHAUSTED all the time, to the point where I have difficulty keeping my eyes open at times during the day and my most recent CD4 count returned a result that is dangerously low.
So, I need to see a doctor as soon as possible - that goes without saying - but how on earth can I find one who takes my concerns seriously, and one who I feel comfortable discussing all my health issues with, without being made to feel as if I'm the archetypal 'difficult patient'?
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Hi BB,
I've been wondering whether you'd found a new medicine that you would tolerate better than the Atripla; I'm sorry to hear that things have been rough since then. I've had, and people in my family have had, very bad experiences over the years with doctors who have refused to answer questions or explain things in plain English, or who have simply failed to show basic respect to the patient as an autonomous person. I am extremely lucky to have an excellent doctor now, and I hope I never take her for granted!
It certainly seems outrageous to me that a doctor should refuse to discuss something as basic as side effects and tell you to discuss that with a pharmacist! This doctor appears to have a highly authoritarian view of the doctor's role: yours not to question why, yours but to do or die?
However I cannot judge or comment on the specific cases you describe without more details. For example, you mention the emergency clinic doctor: without knowing the context of her having lost her tempter, mentioned lipoatrophy, and ordered you out of her office, I have no idea what to think or say.
The bottom line, for me, is that if this is the case, the best you can do is take charge of your own health situation, educate yourself as best you can about all the medicines, side effects, and so forth, and make your own decision based on your reading. After all, there is no shortage of material on the internet--on these forums, for example--with information about side effects and so on. Then, you could, for example, go to the doctor and say "I have decided to take Isentress/Truvada" (or whatever). If the doctor objects, she then has to give a reason for her objection, and cannot evade a discussion. If not, you get what you want.
Clearly, this is not ideal, and you should certainly keep fighting to get a doctor who respects you, discusses things fully with you, and recognizes that decisions are made by a patient, a resonsible adult, after advice--not a ukase--from his doctor. But I hope you do not allow your health to descend into a dangerous place while you wait. Having rejected atripla, there are surely only a few other possible combinations. Surely there is no medicine--Istentress, Kaletra, or whatever--that has not been the subject of intense conversations here in these forums. Read those discussions, choose a combination that sounds good to you, decide how soon you want to start, and then appear before the doctor armed with your decision.
Good luck!!
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Depending on where you're located there are forum members who may be able to recommend someone. You can also search www.aahivm.org and www.hivma.org These sites allow you to search by location for a provider with HIV experience.
It's probably a good idea to do a resistance test and make sure you did not develop NNRTI resistance from stopping Atripla. If you did, that means you wouldn't be able to take certain NNRTIs such as Viramune, apart from Sustiva (which you don't want to take anyway). It would be good to know for sure if you developed resistance or not to some NNRTIs as far as knowing future treatment options that may be available to you.
Was a resistance test done before you started Atripla?
Dr. Gallant gives his opinion on the pros and cons of each of the preferred combos for starting meds, which is a good place to start, LINK:
http://www.hopkins-aids.edu/q_a/patient/recent_questions/lost_on_choosing_medication.html?contentInstanceId=513447&siteId=7151
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This is rather concerning to me, as I distinctly recall there being caution advised when you halted the previous regimen four months ago and then stated you'd not start something until after the Christmas holidays. The caution was because you were already down to 84 cd4 with a VL ~600,000
So now it's almost March and you're still not on anything? While I'm sorry you've not found a doctor you mesh well with you're at a point where you just need to deal with whoever you get, then you can find someone else.
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Depending on where you're located there are forum members who may be able to recommend someone. You can also search www.aahivm.org and www.hivma.org These sites allow you to search by location for a provider with HIV experience.
IIRC buffaloboy is in the UK
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IIRC buffaloboy is in the UK
Ahhh, yes, now I remember. He's the guy who had the friends who were getting married.
He took Truvada for about a week in order to avoid NNRTI resistance.
Buffaloboy, this is no time to be pointing fingers at doctors no matter how badly they may have behaved. You are living in a country where you have access to these very expensive medications. I hope you are able to sort this out ASAP and start on meds.
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Sez the Philodendron:
The caution was because you were already down to 84 cd4 with a VL ~600,000
Oh man.
Buffalo, you need to ge this sorted doll.
Now the problem here is that I've had a number of traumatic experiences with the doctors at my clinic and I just haven't gelled with anyone. I come away feeling really upset, and I never feel as if I;m being listened to I was quite cross when my most recent doctor said he was 'surprised' to hear that I was suffering on Atripla as most patients tolerated it well. I felt as if he was saying that I'd failed the treatment rather than it failing me. And how can a doctor be 'surprised' when the component in Atripla, Sustiva, has been on the market for over a decade and the side effects well documented.
I think you're beyond the point where you can fuss about whether or not you and your doctor "gell". You have access to the British NHS. Take advantage of your options.
MtD
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Thanks for the responses so far.
Just to clarify, I am in London, and I did have resistance testing done and the full range of treatment options are still available to me, although I don't want to return to either Sustiva or Truvada, the latter causing skin pigmentation issues.
I don't see the point in just dealing with 'whatever you get' as that way lies a re-run of the Atripla debacle where treatment had to be terminated after a short period, and my CD4 count falling yet further.
As I made clear in my opening post I'm acutely aware of the urgency of this situation and that's not a point that needs to laboured, but without the right doctor to provide the requisite support and work with me as a team, it's very difficult to see how I can move forward.
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OK, I give up on this.
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Being Alive > Skin pigmentation issues.
Put things in perspective, deal with what you are prescribed for now (or go to any doctor willing to write you a prescription for another combo and tell them that's what you want) until you're healthy enough to get to what you really want. Really though, you need to deal with your health primarily and the social interaction between you and your doctors secondarily. If the numbers are that bad don't wait around trying to find the prince/princess charming of doctors and the perfect regimen.
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Thanks for the responses so far.
Just to clarify, I am in London, and I did have resistance testing done and the full range of treatment options are still available to me, although I don't want to return to either Sustiva or Truvada, the latter causing skin pigmentation issues.
I don't see the point in just dealing with 'whatever you get' as that way lies a re-run of the Atripla debacle where treatment had to be terminated after a short period, and my CD4 count falling yet further.
As I made clear in my opening post I'm acutely aware of the urgency of this situation and that's not a point that needs to laboured, but without the right doctor to provide the requisite support and work with me as a team, it's very difficult to see how I can move forward.
Well honey, it's your call. Personally I think you're being a touch precious about this.
Whilst I get the whole "working as a team" thing, the only thing Team Buffalo has to do is try various treatment options, not re-draft the Paris Peace Accord.
MTD
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I've seen a doctor a couple of times since I stopped Atripla and he wrote down some alternative combinations on a Post-it Note, that when I came to look at it home, made no sense whatsoever. And I just don't feel comfortable going back to him to ask to go over it again as I sort of feel like the dumb kid in the class.
Leaving aside all the interpersonal communication challenges - there seems to be some basic "care" issues to solve. You say you have seen a doctor several times since stopping Atripla. He wrote treatment options on a post-it note? What is that all about? Did you tell him that you were not ready to start HAART again? Why didn't he prescribe you a new HAART combo? And why didn't you start one? Did you say you wanted to think about it? But it sounds like months ago. And as you say, maybe you are not up to figuring this out and should just go with a doctor's recommendation.
It sounds to me like you are holding all the cards and stalling and making things difficult because you will not commit to what doctors are recommending. Is that possible? Its human, especially if your first HAART combo was disastrous. But at that point, the "CARE" issues were -
how stop Atripla?
what to replace ATripla with?
Seems like a lot of basic info is missing and perhaps basic questions were not asked, or you didn't listen to the answers, or you are not clearly reporting them to us in this forum.
You have mentioned several doctors in your post, all seemingly atrocious. That kind of seems worth reconsidering.
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How can you know for sure that Truvada caused skin pigmentation issues? I've never heard of this happening. I'm not thrilled with Truvada myself but for other reasons and I'm on it for now and doing great (Isentress/Truvada).
The link I gave you from Gallant above discusses the preferred options but they all include Truvada. If you absolutely must avoid Truvada then Epzicom is the most obvious replacement. You can go on Reyataz/Norvir/Epzicom. A friend of mine is on that and he's doing great, excellent numbers and looks and feels great.
You don't absolutely have to boost Reyataz with Norvir when used with Epzicom but with your numbers I definitely would, you can consider dropping it later, after being undetectable for a while.
I've also heard that Isentress/Epzicom works well, it's being studied and I know of people on it who are doing well.
Find a doctor who will prescribe a reasonable combo for now and deal with finding a doctor who is the "right fit" later.
EDITED TO ADD:
I think Epzicom might be called Kivexa in the UK.
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So in a nutshell - we are all advising you to quit the stalling and get on HAART now.
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EDITED TO ADD:
I think Epzicom might be called Kivexa in the UK.
Yus, it is. Combination of abacavir and lamivudine. Goes well with ritonavir+atazanavir. Once daily dosing.
Doubles heart attack risk too. :)
MtD
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Doubles heart attack risk too. :)
MtD
Not necessarily, the jury is still out on that. There have been some studies that have found no connection, others that have. Even those that have I don't think we're talkin' "doubling."
Truvada f**** up the kidneys and the bones but untreated HIV is mad scary . . . .whaddaya gonna do? :)
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Not necessarily, the jury is still out on that. There have been some studies that have found no connection, others that have. Even those that have I don't think we're talkin' "doubling."
Truvada f**** up the kidneys and the bones but untreated HIV is mad scary . . . .whaddaya gonna do? :)
The jury can suck my tits. Frau Eva confirms the heart attack risk thing, so nyah. :P
MtD
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The jury can suck my tits. Frau Eva confirms the heart attack risk thing, so nyah. :P
MtD
I agree that some studies have seen a connection but some other studies found no connection, below. If there's a family history of heart attacks I'd be concerned, otherwise not so much.
Two studies presented on Monday at the Fifth International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Cape Town, South Africa, found no association between abacavir (Ziagen, also in the Kivexa combination pill) and increased risk of heart attack or stroke, and underlined the importance of confounding risk factors.
LINK:
http://www.aidsmap.com/en/news/B125FC65-35B6-4347-9394-306E6B1F09F6.asp
And here's what the esteemed Dr. Gallant has to say:
If there is a risk of heart attack with abacavir, it's extermely low in people without many cardiac risk factors.
Methinks he trumps the Frau . . . Just saying. ;)
LINK:
http://www.hopkins-aids.edu/q_a/patient/recent_questions/new_nrti_combination_.html?contentInstanceId=516612&siteId=7151
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Dr Gallant is a superannuated windbag. Just sayin'.
MtD
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Dr Gallant is a superannuated windbag. Just sayin'.
MtD
lol
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Dr. Gallant doesn't seem to fret about Truvada and kidneys.
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I kinda think that a lot of these risk factors are for people with underlying conditions already that will be exacerbated.
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Who the fuck is Dr Gallant anyway and why is his opinion always greeted with hushed fucking awe?
MtD
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Not necessarily, the jury is still out on that. There have been some studies that have found no connection, others that have. Even those that have I don't think we're talkin' "doubling."
Well... actually... we are talking about "doubling" more or less. A study at the 2008 CROI found the abacavir component of Epzicom/Kivexa increased heart attack risk by 90% and 1.9 times rounds to "double" http://www.aidsmeds.com/articles/hiv_abacavir_heart_2151_13940.shtml
But doubling a quarter percent risk is still only a half percent risk. And that pales when compared to the risks of delay in treatment for someone who is under 100 tcells. So I'm hoping you can find a better clinic pronto Buffaloboy. And if the options are limited, getting under the care of even an inconsiderate doctor would give you time and health to find a better one -- after all, you hardly want to get sick while you are still on the roster of this doc do you?
Best wishes
A
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So in a nutshell - we are all advising you to quit the stalling and get on HAART now.
As I've now pointed out twice, I'm aware that I should be on treatment but, with respect, doesn't address the actual questions I posed in my initial post.
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Buffalo,
The problem is that I do not understand why you feel you need a doctor before you can make a decision. What information, about the meds or their side effects, could a doctor possibly give you that you could not just as easily find online? Why not just get all the information you need about the various imperfect choices, choose one, and march over to the doctor armed with your decision?
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Who the fuck is Dr Gallant anyway and why is his opinion always greeted with hushed fucking awe?
MtD
He's someone who, because of his extensive knowledge and experience treating HIV, is routinely consulted by other prominent and experienced HIV doctors when they have a difficult case.
This is his bio:
Joel Gallant, MD, MPH is Professor of Medicine and Epidemiology in the Division of Infectious Diseases at the Johns Hopkins University School of Medicine in Baltimore, Maryland and Associate Director of the Johns Hopkins AIDS Service. Dr. Gallant is an infectious disease specialist with expertise in HIV infection and AIDS. He studied medicine at the University of California, San Francisco, completed his internal medicine training at Yale-New Haven Hospital, and his infectious disease fellowship at Johns Hopkins Hospital, where he now cares for hundreds of HIV-positive patients and conducts clinical trials on new treatments for HIV infection. Dr. Gallant, who received the HIV Clinical Education Award from the HIV Medical Association in 2006, is internationally recognized for his ability to communicate new research developments and treatment strategies to both professional and lay audiences. He is also the coauthor, with John G. Bartlett, of Medical Management of HIV Infection, and he conducts web-based question-and-answer forums for clinicians and patients on the Hopkins HIV Guide.
Dr. Gallant doesn't seem to fret about Truvada and kidneys.
Gallant on Truvada: we've always known that it can sometimes cause kidney problems, but it usually doesn't, and when it does, you can easily identify the problem and switch drugs.
LINK:
http://www.hopkins-aids.edu/q_a/patient/recent_questions/new_nrti_combination_.html?contentInstanceId=516612&siteId=7151
Buffaloboy: Not exactly sure what you're asking for in your post. If what you want is a recommendation for a doctor in London, it would be better to start a new thread with a title to that effect such as "Need HIV Doc In London."
Here is a previous thread that discussed HIV care in London:
http://forums.poz.com/index.php?topic=12763.0
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Gallant on Truvada: we've always known that it can sometimes cause kidney problems, but it usually doesn't, and when it does, you can easily identify the problem and switch drugs.
You do realize that was my point, don't you?
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You do realize that was my point, don't you?
I know but I just love quoting him. He's dreamy. ;)
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He's someone who, because of his extensive knowledge and experience treating HIV, is routinely consulted by other prominent and experienced HIV doctors when they have a difficult case.
Oy. My first question was clearly a rhetorical flourish. Of course I know who he is. It's the second one that this doesn't answer.
MtD
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Dude, I dont wanna sound judgemental whatsoever but based on what I read it seems like u complaining alot such as u dont wanna stand in line, u dont wanna ask too many questions cause u feel like dumb kid.
Dude, snap out of it! U racing against time, there's no time to find a "compatible" doctor here. Now, go back to the hospital and find whoever doctor u can get. Tell him ur story and ask him as many questions as possible.
Dont worry about sounding like a dumb kid, the more u know the more u learn!!
Waiting in line isnt as bad as once u diagnosed with AIDS, dude. You have to sacrifice in order to gain something. Do it for your health-sake!!
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Buffalo -
You do not need to "gell" with a doctor to start treatment. You're finding ways around starting treatment by displacing something about your own ambivalence or fear - onto disrespectful doctors or poor doctor-patient relationships. I'm sure you could make an appointment at the nearest gay health clinic and either be seen and prescribed drugs or be referred to a specialist or however it works in London, and be on HAART within a few weeks.
You are never gonna get all your questions answered to a satisfactory degree, for yourself. This is just the kind of character you have. You have a right to your character it makes you you but dont let it become harmful to your health.
I teach and I have a few students like you every year. Lots of anxiety and questions and fear of the unknown or resistance against the teacher-student relationship and it all adds up to nothing in the end cause the teacher just has to be patient - to a point - and invite the student to jump into his/her learning without everything being known and perfect. And then the student has to have the autonomy and willingness to learn. And work with me even if we don't get along - learning take place, the teacher is just a facilitator. Your doctor is just a facilitator for your health.
Occasionally a student fails to jump and trust himself and me, and learns nothing, its pretty sad but not the end of the world.
But if you don't deal with getting yourself on treatment, that's it, you die. That won't be the doctor's fault, or because you are a difficult patient. It will just be fear of moving forward and growing.
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Any update/progress on locating a doctor?