POZ Community Forums
Main Forums => Living With HIV => Topic started by: odyssey on July 19, 2011, 07:56:09 pm
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So I went in for my latest results yesterday and my viral load has shot up from maybe 35,000 to around 200,000. I was doing pretty well off meds, controlling my viral load for over a year and keeping my CD4 up. Now, although my CD4 is still up, it looks like I'm losing viral load control.
The thing is, if any of you remember, when I was on meds (see my signature line), I had HORRIBLE side effects (severe depression, intense joint pain, insomnia, catatonic, psychotic, etc.).
I'm terrified of going back to where I was then. I had to drop out of school and I was unable to function. Frankly, I don't think that is any sort of life I'd choose for myself. What if all the meds do that to me? I'm so afraid of dying but I'm also afraid of living my life like I did for that five months!
Anyone?
odyssey
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Hey sweet boy,
Yikes, yeah you need to get that VL under control again.
Cant you try a different regimin? Prob not Atripla but maybe some of the others?
-Will
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Hi Odyssey,
Can you talk over Isentress/Truvada with your doctor?
Twice a day dosing, but the side effects are minor.
I hope Inchling and Miss P will weigh in as they've had good experiences, and for longer, with I/T.
Em
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I was doing pretty well off meds, controlling my viral load for over a year and keeping my CD4 up.
yikes. sorry to hear your numbers are not very good. However, you didn't do anything to control your viral load nor keep your cd4s up. Really there's very few ways, with very limited effect, to do anything to change your cd4s. basically they go up when the HIV isn't killing them off. And there is no way to control HIV short of antiretrovirals. By being off meds, you were not "controlling" anything, you were simply doing nothing against the HIV.
Sorry to be so blunt; but that's the science of treating HIV.
What if all the meds do that to me? I'm so afraid of dying but I'm also afraid of living my life like I did for that five months!
the "drugs" page of AM lists 54 meds. there are plenty of options for you to try to find the right ones. Since you didn't already do it, you really need to talk to your doctor about finding the right combo for you. It took me nearly 15 years of meds to find the right combo to keep the HIV in check with no major side effects (and that's only happened in the last few years). You'll just have to resign yourself to going through a period of testing meds to find the right combo.
Many people with HIV have to live their lives being sick - but that's a lot better than being dead. I lived like that for a decade and a half until I finally got onto the meds that are doing me right. Stopping meds and postponing finding the right combo really isn't the way to go, because it drags out the time before you find the right stuff. By not immediately switching, after trying for a time and after deciding your combo wasn't good for you, you're actually making the process take longer than neccesary.
once again, I'm sorry for being so blunt; but stopping treatment against HIV is not the way to treat HIV. That kind of action leads to possible resistance and relapse into illness. I hope you talk to the doctor soon and start the process of finding a regimen that'll work for you, so that you can get a handle on this before HIV/AIDS gets a firmer handle on you. :-*
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It looks like you didn't get along with either the Reyataz/norvir or the Truvada or both. The good news is there are plenty of regimens that use neither. You could do an Isentress/epzicom or a Rilpivirine/epzicom or many other myriad of options. It sounds like you are completely freaked out about it. Don't let the anxiety about what could happen cripple you into inaction or expecting the worse. You are going to be okay and you will find a reginen that works for you. Even if it takes a few tries.
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I have the impression, from your other posts, that you may be on a number of drugs. I wonder if you had an interaction between the HAART and the other drugs? Some of the symptoms you list (e.g. intense joint pain) sound like potentially overdosing effects and Norvir often boosts a lot of drugs.
Perhaps I'm confusing your situation with somebody else's but if you were on multiple drugs it might be helpful if you posted them -- and perhaps a cross posting in treatment and side effects with a reference to this post?
And then going forward you might want to see if you can access a specialist in drug interactions to work with your doctor. There are lots of different combinations, but it might take some help to sort through the most likely ones for you.
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leatherman- I didn't mean controlling so much as my body was somehow managing to keep the virus relatively in check aka the virus wasn't running rampant as its beginning to do now.
I feel like I can't afford to take years to find the right combo. I'm in the middle of college and I've already taken eight years to get to the point of having two years left until I graduate due to my mental health issues and HIV thus far.
Okay, so for all you brilliant scientists or people who might know things, here is a list of meds I take. Given, the meds I was taking when I was on Truvada/Reyetaz/Norvir weren't exactly the same.
Zoloft, Buspar, Xanax XR, Topamax, Seroquel, Risperdal, Lamictal, testosterone cypionate, Qvar, pravastatin, Zyrtec, Zantac, multivitamin, fish oil, flax seed oil, green tea, garlic oil, selenium, Vitamin D, and on an as needed basis: Xopenex, Vicodin, Fiorecet, Xanax, and Flexeril
Yep, that's my medicine chest!
I can't take Atripla because it has a high rate of psychiatric side effects. I checked out Isentress, which my doc is leaning towards, and sadly it seems to have depression as a side effect too. A lot of them seem too have that or anxiety or even things like hallucinations or paranoia if you actually read the prescribing info on the company's website.
I'm thinking of asking my doc to recheck me soon so I will know not to go back to school if I would end up having to leave in the middle of the semester anyway. I can't afford to owe the college 6000 dollars because I lose my financial aid eligibility due to withdrawing mid-semester but not being eligible for a refund!
odyssey
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Wow, thats a lot of medications. Being you are in college I am assuming you are a young guy. Why on earth are you taking so many medications? How did you decide it was the HIV meds causing your side effects and not one of the 20 other pills you are taking?
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That is a very long list and looks to me like it would merit a discussion with a pharmacologist specialist of some type as you consider adding to it -- particularly drugs that are know to boost many other drugs. Can you ask your doctor or medical plan to work jointly with a specialist in the drug interactions -- most of the really large pharmacy benefit managers will have people with doctorates in the pharmacology who might be helpful.
As far as your specific concerns about Isentress -- the full prescribing info (http://www.isentress.com/raltegravir/isentress/consumer/prescribing_information/index.jsp) says that depression was pretty rare (under 2%) which is consistent with its better reputation compared with sustiva.
A
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Wow, thats a lot of medications. Being you are in college I am assuming you are a young guy. Why on earth are you taking so many medications? How did you decide it was the HIV meds causing your side effects and not one of the 20 other pills you are taking?
That definately exceeds my degree in internet medicine to offer any suggestions other than, good luck, I hope it gets better.
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Do not go without meds especially if you're being shown all the hallmarks of a declining immune system. There are a lot of options, but going without meds really isn't one of them. This is the time where you discuss all of your options with your doctor to find some way to attempt to balance your life and the meds. If you were having intense side effects perhaps Therapeutic Drug Monitoring might help to minimize the dosage and side effects along with it.
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35k to 200k jump on viral load on 1 test is not big enough to be significant. The test has a wide error of margin, about 1.0 log10 and the difference between your two viral load results is 0.8 log10
- matt
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I am not a Dr
When I was on Buspar I did not do very well on it at all used to get heavy pressure on my head.
I am not a big fan of reading side effect info as I would end up not taking anything but if you read through the possible side effects of Buspar "Rarely, patients taking buspirone may develop movement disorders such as shakiness (tremors), muscle stiffness, mask-like facial expression, jerky walking movements, or a condition known as tardive dyskinesia."
Also says Dizziness, drowsiness, headache, nausea, nervousness, lightheadedness, restlessness, blurred vision, tiredness, and trouble sleeping may occur.
My Doctors will only prescribe limited supply of lorazepam as it is VERY addictive and has withdrawal which is bad for SOME people.
I do not read the side effect labels as any will become evident with tests or noticing odd things e.g a big rash all over my body for 2 days and Night terrors when taking Sustiva. Since like you I have had anxiety for years it becomes hard to know what is working and what is not. Buspar has been around for many years perhaps their is some new combo to try ?
Wish you all the best.
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- You may need to recheck you lab again. Yes, there might be error in lab as newt indicated above.
-You are on too many meds. Almost twenty five meds. There might possibily be meds interactions which you don't know. So, in cosultation with your doc. you need to reduce them to four or five and only focus on the once which are very importance. Back in year 2009 I manged to reduce my meds size from 13 to that of two now, Atripla and fish oil.
Hope you will be okay and be able to control your VL.
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How long did you give the meds a chance? I was very ill for 6 months but just stuck it out cause I know the only other option is death. How many combos have you tried? I really hope you can get on a combo and stick it out. Were you put on anti depressants? I have been on them since starting meds and it took my depression right away. I wish you all the luck my friend. Must be so frustrating and scary for your future.
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By the looks of it you only tried one combo. Some people take yrs to get it right. I started on Truvada and viramune. Terrible side effects but I stuck it out. I don't mean to be blunt but if you don't keep on trying every combo you won't be around much longer to even try. I just feel either you have gave up way to quick or you need a new doctor. I know a friend that tried 12 combos till he got it right and is now in great health. PLEASE keep on trying.
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leatherman- I didn't mean controlling so much as my body was somehow managing to keep the virus relatively in check aka the virus wasn't running rampant as its beginning to do now.
I feel like I can't afford to take years to find the right combo. I'm in the middle of college and I've already taken eight years to get to the point of having two years left until I graduate due to my mental health issues and HIV thus far.
Okay, so for all you brilliant scientists or people who might know things, here is a list of meds I take. Given, the meds I was taking when I was on Truvada/Reyetaz/Norvir weren't exactly the same.
Zoloft, Buspar, Xanax XR, Topamax, Seroquel, Risperdal, Lamictal, testosterone cypionate, Qvar, pravastatin, Zyrtec, Zantac, multivitamin, fish oil, flax seed oil, green tea, garlic oil, selenium, Vitamin D, and on an as needed basis: Xopenex, Vicodin, Fiorecet, Xanax, and Flexeril
Yep, that's my medicine chest!
I can't take Atripla because it has a high rate of psychiatric side effects. I checked out Isentress, which my doc is leaning towards, and sadly it seems to have depression as a side effect too. A lot of them seem too have that or anxiety or even things like hallucinations or paranoia if you actually read the prescribing info on the company's website.
I'm thinking of asking my doc to recheck me soon so I will know not to go back to school if I would end up having to leave in the middle of the semester anyway. I can't afford to owe the college 6000 dollars because I lose my financial aid eligibility due to withdrawing mid-semester but not being eligible for a refund!
odyssey
You sound like your getting defensive against us that are trying to help. My Lord you are on way to many drugs and I can almost guarantee your having bad interactions. Did you tell your Doc everything your on? My doc would flip his lid. You need to figure this out. You say you don't have time cause of college and stuff. What good is college if your going to be sick and quite possibly to sick to even function. Your health should always come first. Not school or anything else. The changes I made in my life were crazy. I basically started a new life to be at my best. You need to take this more seriously.
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Wow, thats a lot of medications. Being you are in college I am assuming you are a young guy. Why on earth are you taking so many medications? How did you decide it was the HIV meds causing your side effects and not one of the 20 other pills you are taking?
Thats exactly how I feel. I can almost bet my life your having terrible interactions. I have NEVER heard of anyone on so many unnessary things. I doubt your being honest with your doctor. Its your choice. Its time to really think this vthrough. And I am very informed. Been poz 12 yrs. I was on a few drugs that caused me such horrible interactions. One being vicodin and oxys. And your not even on an anti depressant. Probably the most important thing. Sorry but you just have me so frustrated.
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Actually, I am on an antidepressant (Zoloft). Also, I take Lamictal to help boost its effects. The other psych meds (buspar, Xanax, seroquel) all are to manage the severe anxiety I have due to my autism.
Wait.... I don't need to justify my meds to everybody! As a fact, my doctor knows every single med I take and is fully supportive in order to keep both my mental and physical health in balance.
Also, I know it was the HIV meds that caused my symptoms and not my other meds because when I started meds I had been on my other meds for quite awhile with no problem. Soon after starting HAART I had the issues. Within a week of stopping HAART five+ months later I was feeling better.
I'm kind of disappointed this thread which I started because I am headed toward meds and need support has turned into a criticism of me (accusing me of being dishonest with my doctor), and assuming the meds I do take are not needed.
odyssey
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I think what people are trying to say is maybe you need a second opinion since you are on so many anti Anxiety drugs.
I am not a DR but taking Zoloft, xanax ,Buspar, and seroquel is quite a mix.
I am surprised your Doctor did not recommend another combo ?
I see a regular DR for everyday stuff and An ID Doctor for the HIV I do not know if you could do that ?
I am on Effexor and ativan in an emergencywhat is clear is you need to sort your meds out ending up in the Hospital is not going to help. I would be scared as here they keep having outbreaks of C.difficle the hospital is like a breeding ground for germs.
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I apologize for asking you to share your list of meds -- I thought you might get helpful suggestions rather than the rather rude posts you have received. Some of these posters seem to have forgotten this is a support forum.
I guess it boils down to the fact that you have more complex medical issues than most of us with HIV. The standard recommendation for people with HIV is to find a doctor who treats a lot of HIV patients. In your case it is probably important to find doctors who have treated a lot of people with complex medical issues who also have HIV, or to ask your current doctor to find a doctor to consult with should you decide it is time to restart the drugs.
Its also important to be an informed patient yourself. So in the interim, you might want to do some research on the potential interactions of your current medications with potential first line treatments. This site used to have a great interaction checker (Check My Meds) but it has been down for months and instead sends you to a somewhat less user friendly site at the University of Liverpool (The Liverpool site doesn't recognize trade names) Still you might want to input your current list of drugs and see what might be most tolerable.
Good luck (and apologies)
A
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Odyssey, the website Assurbanipal refers to is this one: http://www.hiv-druginteractions.org/