POZ Community Forums
Main Forums => Living With HIV => Topic started by: xyahka on September 06, 2010, 02:28:51 am
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Hi i have been put in front of an issue that i am still not sure how to solve.
Since diagnosed with Hiv couple of years ago, i have been very healthy, few problems here and there. At beginning of the year my CD4 count was 510 so i was calmed, next test on May says my CD4 went down to 320. Doctor said i should start meds immediatly but i decided not to do it. It is because of a concern regarding meds supply in my country.
So i have 2 question....
I still think my cd4 can go up at least a little without meds, i know it won't last forever but i am trying to earn time without meds. Do you have any advice of what kinds of things could help? like a sort of regimen you may have follow and helped you. I am talking about earning time cause if possible i would like to start meds when i have better meds options here, or have some amount saved to face the periods of lack of meds they have here. I am giving myself 6 months of trial before deciding to take meds if things does not improve in my numbers.
2. I know meds is not a thing i can avoid for the rest of my life, i just don't feel ready right now... i actually feel it is not the moment yet. Although i might be on denial off course, so i wonder... how did you get ready when you had to start meds?. I have seen lot of people starting and having hard times, some even quit their meds regimen.... if i have to do it i would prefer to be ready... just not sure where to start.
I though that since some of you have walked that path before could share with me some of your experiences and things that helped you at the moment of starting with arv.
Thanks
J
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I think this is a question you'll have to answer yourself. You're at CD4 320. Most docs (well, many are moving there) now say meds should be started when you get below 500 but at least by 350. How often do you get your labwork? So many studies are now saying we have a better prognosis when you keep your CD4 above 500.
I know how you feel, however. I've been wondering what my next labs will say about my numbers. I recently got a mouth fungal thing and have been feeling kinda bad. That may be (probably is) the result of anxiety thinking about what my next labs will show. I usually get this way after doing my bloodwork, but this time seems different. I think I will have a hard time when it is time to start meds. I've gotten use to having this virus and not being on meds. I don't think it has totally hit home yet, because I'm not on meds. I hope I have the courage to make the decision and not look back. I do not want to fall much below 500. I try to tell myself that I've been given a 20 month reprieve so far. I thought I was going to have to start meds in December 2008. So, I'm trying to be thankful for that and get my head thinking I will probably feel so much better once I do start meds. I hope I ask myself why I didn't start meds sooner.
Living in a country where you have limited access to meds is so much different than my situation, so I'm not sure what to say. It is good to build up a supply for a rainy day, but you can only do that if your doc prescribes the meds.
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Hi, i get my labowork every 6 months (thats why i set 6 months as period to see if my cd4 improves).
If possible i would like to remain off meds yet. Eventhough i had a case of shingles (1st time in my life) about a month ago, before getting the results of my labs. Afterwards i have been ok, except for a strong flu that i have had twice... and today an eruption in my eye that has it swollen. I don't know if all this is hiv related, but for sure it makes you wonder... i guess the topic of starting meds is on the table again and i want to come to terms with this. All your experiences and ideas are valuable. Thanks
cheers,
J
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Hi Xyahka, my experience has been a very slow, if not stalled, CD4 recovery. I wish I could have begun meds sooner, with a much higher CD4 number.
Your count may increase, but it's more likely to decrease. It can be a hard decision to make, and I hope whatever you decide works for the best.
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There's no reason why your CD4 count cannot go back up. My numbers have been up and down the whole time I've been monitored - since 2001. My lowest ever recorded number was 281, but the next several sets of numbers were as follows: 460, 568, 645, 532, 715. I had shingles around the time of the 281 result, so perhaps your shingles also caused your low number.
When do you get your next blood draw and numbers? It looks like you only get labs once a year or so - you should be doing it every three or four months.
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I agree with Ann -- you should be getting lab work done more frequently in this number range. If it goes back up you can procrastinate further -- but that's also a huge issue here that needs to be addressed. You've had three years to mentally prepare yourself for the eventuality of meds, and that's more than enough time. The fact that you're not really ready mentally is troublesome, so what do you expect to do about this. While it's possible for your cd4 count to go back up the next lab take, it's also possible that it will sink further. You obviously realize that this is largely a mental issue, but what do you plan on actually doing about it?
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You've had three years to mentally prepare yourself for the eventuality of meds, and that's more than enough time. The fact that you're not really ready mentally is troublesome, so what do you expect to do about this.
I could be wrong but I get the impression that his hesitation has more to do with the uncertainty of obtaining meds in his country.
xyahka, what country are you in? Is access to the medications difficult? Have you discussed with your doctor what medications you would start with once you do start?
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I also agree with Ann. The problem with only getting labs every six months is that that isn't often enough to tell whether a low number is just an aberration or part of a trend. Also, if you're numbers are declining, it's a little dangerous not to know about it for another six months. Of course I realize that that might be beyond your control.
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I could be wrong but I get the impression that his hesitation has more to do with the uncertainty of obtaining meds in his country.
xyahka, what country are you in? Is access to the medications difficult? Have you discussed with your doctor what medications you would start with once you do start?
He's in Ecuador -- but we all know people will invent things they think might happen to avoid things. Just sayin', and you can read it between the lines in his post. He's "not ready" mentally, and my point is simply asking what he's done mentally for this since being diagnosed in early 2007.
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He's in Ecuador -- but we all know people will invent things they think might happen to avoid things. Just sayin', and you can read it between the lines in his post. He's "not ready" mentally, and my point is simply asking what he's done mentally for this since being diagnosed in early 2007.
That's a good point.
xyahka, it's definitely a good idea if you can build up a supply of extra meds just in case.
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I am talking about earning time cause if possible i would like to start meds when i have better meds options here. Thanks
J
What are the options available at the moment?
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One low result on CD4 does not a trend make, I'd want at least 2.
The question mark on drug supply is important, because once you start you don't really want forced breaks because of stock-outs etc.
A CD4 around 500 is basically normal. Below 350 is impaired.
Like I said, 2 tests please.
- matt
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That's a good point.
I also trust you, and the others here, read the new study on treatment naive patients having a form of post-traumatic stress disorder at a high rate, as regards specifically the "when" factor of going on medications? People on this forum tend to emphasize nuts-and-bolts clinical stuff which, while very important, can't be disconnected from the mental aspect. Half the time people take it as some sort of personal insult when it's brought up.
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having a form of post-traumatic stress disorder at a high rate
Good point. I most certainly have that... This forum helps...
One aspect of the test & treat is that everything goes so fast... Poz test, CD4 VL, genotype, meds selection, initiation, takes less than 8 weeks. That is too little time to recover from shock
Eric
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Hi guys thanks for the answers
When do you get your next blood draw and numbers? It looks like you only get labs once a year or so - you should be doing it every three or four months.
Next labs should be around November this year but i get the results around January next year or so. About testing every six months... well, there is no way to change that, those are the rules here if i want to get free labs, to pay for it would be too expensive.
You obviously realize that this is largely a mental issue, but what do you plan on actually doing about it?
Well it is true that meds is a topic i have been avoided to analyse deeper, since it sort of freak me out. Although now that things start to force me to face it (with my eye thing, recurrent flu, and my new test coming soon with the chance of having a lower cd4) i guess i am starting by talking about it. You know theorical info is there but i guess i try to get to know more on how complex it is the beginning of a long life regimen from those who have experienced first. I have never been interned in a hospital in my life, never really had to take much pills.... so i guess the idea is... scary.
xyahka, what country are you in? Is access to the medications difficult? Have you discussed with your doctor what medications you would start with once you do start?
Yes, i live in Ecuador. Access to free meds should not be so difficult (so they say...). The problem is that once or twice per year they have troubles with the meds supply. Then patients have to buy their meds during one or two months per year. Depending on what you take, it may cost you a lot, that's why i prefer not to start meds yet. My doctor told me last time what i was suppoused to take ... it finished in "ina" (not sure if lamivudina or something like that... i think he mentioned 2 or 3 meds but i was so shocked when he said i had to start meds that i got blocked and i don't remember the names of the pills. I'll ask him again to get more info... efavirenz is among the combo i remember cause i know it causes lypo.... when i heard it got very scared.
About the mental issue Miss Phil talks, it is not that i am against meds. It just gets me scared. When i first got diagnosed i had anxiety issues and was very closed to get medicated for it, so i decided not to read too much so i won't be scared about what could happen. Bad news about aids and hiv are everywhere. It has worked fine, so far i got more comfortable with the disease i simply wasn't expecting that after having a good cd4 (510) next test would say i had to start meds immediatly, it got me out of base.
What are the options available at the moment?
From all the arvs developped around the world they only have half of them available here and not with generic names, and you know that affect prices. If i had to choose i would prefer to start with atripla... but they don't even know what it is :). I'll ask a friend who started meds a couple of months ago (and said was having a misserable time with his combo) cause i think they recommend me same combo and let you know... perhaps your experience is better and can tell me some tricks about it.
I'll keep on trying to grab more info before my next test so i can be really ready to take the next step. Thanks everybody, your ideas and opinions are really helpful.
J
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J, efavirenz is in Atripla. And efavirenz isn't really known for lipo issues.
I would suggest you start learning about the meds (http://www.aidsmeds.com/archive/2006_Jul_1126.shtml) now - concentrating on the ones that are available to you - so you're well informed about them when you do need them. That way you can make an informed decision regarding what you take.
I didn't bother learning about the meds when I was newly diagnosed either. My doc said I probably wouldn't need them for a while (he was right, I'm still med free) so I didn't see the need for the information overload when I was just getting used to being poz. But a couple years ago I started actively learning about the meds and I have a combo all picked out for when the time comes. And it changes from time to time, as new and better meds become available.
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So yeah, you have unresolved anxiety issues both post-diagnosis related and "sword of Damocles" HIV medication related. If you have access to mental health services I would avail myself of that, but because of where you live I can't say what's what there. Sweeping things under the rug for three years, however, is not going to ever resolve the issue. At the very least you should locate a book about cognitive behavioral therapy for they layman and see it helps you on your own.
I may go against the grain here, in light of the anxiety issue, and say maybe "learning about meds" may not be helpful as long as you are confident that your HIV doctor is competent and using standard protocols. I say this because as someone who dealt with generalized anxiety for years (though it's gone now) I think reading about all of the potential side effects will be counter-productive and increase your anxiety, and that's just not helpful.
The bottom line is that you accept the reality of taking pills daily and that it's not actually that big of a deal on a practical level. Most people do not have side effects, or if they do they're only short-term for the first week/10-days and certainly not anything debilitating, more just annoying. Millions of people take these meds on a daily basis and go about their lives in a normal fashion -- that's all that matters in the end. Should you be in the small percentage that has a major side effect, you simply switch to another regimen. Try to think logically about what I just stated and hopefully that starts to decrease your anxiety issue about this particular topic.
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Ask the doctor again for the very specific names of the HAART drugs that he/she has in mind for you. Please write them down.
I think you should post the names here. Maybe members of the forum can give you some information about these specific drugs that will decrease your fear and anxiety. For example you mentioned a fear of lipo but the drug YOU associate lipo with (effavirenz) - so many people take this now all over the world without so many problems.
Second, I think you should take this list of drugs, and find out what people on HAART in Ecuador are doing to make it through the month or two they can't get their free drugs. This would help you so much to know the real situation. (Also, if you want, share this info about Ecuador here, it would be great for this forum to learn about.)
You'll need to confront your fear and anxiety to get this information. Not easy! Courage! But afterward you can make decisions about when to start -- with more information, and less anxiety.
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I though that since some of you have walked that path before could share with me some of your experiences and things that helped you at the moment of starting with arv.
Thanks
J
Now to respond to this part -
When to start - I guess I decided this was not my decision - the specialist told me it was time to start a few months after I seroconverted.
I had two major fears - 1) would HAART work - cause I felt like shit, and needed drugs so fast was I some sort of doomed case, etc etc. In other words, this was a fear of death, and also a fear of long horrible illness.
and
2) assuming HAART worked, could I be sure to get it forever - and therefore not die.
So I guess you have the same fear 2) -- access to treatment.
I didn't have so much fear of side effects - this seemed a smaller potential problem then death or painful illness.
I conquered fear 1) - would it work? - by trusting the doctors who said yes, it would work for me, and then obviously by going on it and feeling so much better so quickly!
I met fear 2) by ignoring my American insecurity about access to health care and talking to all my Swiss friends and the doctor and being assured that as long as I stayed a resident of Switzerland, my medical care access was NOT at risk. Period. Unthinkable. Would take a major event to change that.
So since you have fear 2) - access to treatment - you have GOT to find out what other people in your situation in Ecuador are doing when the supply cuts off.
This info will help you in two ways 1) reduce fear and anxiety - which is rotten for your health and spirit and 2) give you strategies to get what you need if and when the time comes that there is a gap in your coverage.
Finally, since you asked for personal experience, I did not feel that starting HAART was doom and gloom. Thankful and grateful that it exists and believe me, I am among the MANY people who go on HAART and report that their health and spirits improve immensely. Beats death anyday and beats feeling sick and on the decline, and anxious anxious anxious.
I just got my labs today on the phone from the doctor and he said everything in my body is functioning just peachy. I drink, smoke a bit, party, eat well, etc etc etc. Isn't this wonderful?
You have got to get over a doomy feeling about HAART. And you've got to get the info about how people deal with the supply gaps.
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Hi!
J, efavirenz is in Atripla. And efavirenz isn't really known for lipo issues.
I would suggest you start learning about the meds (http://www.aidsmeds.com/archive/2006_Jul_1126.shtml) now - concentrating on the ones that are available to you - so you're well informed about them when you do need them. That way you can make an informed decision regarding what you take.
Ann thanks for correcting, it is clear i know almost nothing about meds. I have heard lot of good things about atripla (low to non side effects, it gets you undetectable quickly and you take it once per day) but i haven't gone deeply on how it is made off. By other hand i read somewhere that efavirenz produced lypo... i need to solve my lack of knowledge for sure. I really like your advice i will definitely start learning more about this... i had said myself i would do it.... i hadn't find the time.... and now the time has found me.
So yeah, you have unresolved anxiety issues both post-diagnosis related and "sword of Damocles" HIV medication related. If you have access to mental health services I would avail myself of that, but because of where you live I can't say what's what there. Sweeping things under the rug for three years, however, is not going to ever resolve the issue. At the very least you should locate a book about cognitive behavioral therapy for they layman and see it helps you on your own.
Philly thanks for your advice, lets say that psychological help here is not free as meds are. In one hand you are right... i need to face anxiety, it has covered so many parts of my life since diagnosed (i tremble when i have read an email if i think it brings bad news.... ). Although, i think i can overcome it... with time. It was by luck i scaped of being medicated for anxiety... i put an effort on that cause i don't want to feel i need help to command my life. That applies for handleling anxiety and perhaps it also affects why i don't want meds yet... anyway, since i am going in that direction i will start to face really sooner better than later. thanks.
Ask the doctor again for the very specific names of the HAART drugs that he/she has in mind for you. Please write them down.
Tomorrow I'll get it and write it here and all the info and experience you can share with me about it will be highly appreciated.
Second, I think you should take this list of drugs, and find out what people on HAART in Ecuador are doing to make it through the month or two they can't get their free drugs. This would help you so much to know the real situation. (Also, if you want, share this info about Ecuador here, it would be great for this forum to learn about.)
This i know. When they are first prescribed meds.... and receive them... they don't drink them during around 2 or 3 months so they make a reserve. It is only after that time they start with the regimen.... off course that leaves them with a reserve to face the first cut in their supply... maybe the second.... and for the third... well... i had once while talking with an "activist" (and they activate almost nothing here) to face the situation of watching him receiving tons of phone calls of people asking him where to get meds, asking him if there was someone with reserve who could sell them, if he knew any cheap pharmacy where to get them.... if he had some he could please give them as gift cause some could not pay for them. Sorry... it got me emotional and it was the day i decided i just don't want to take meds yet.... don't want to be like this :-[.
Believe me if i could choose to avoid them... i would definitely do it. Sometimes it becomes like a bad joke here... but well... i guess i'll have to face it and try to deal with this in a different way....
J
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Thanks for clarifying the strategy. People in many countries do the same thing - get a reserve.
Building a reserve of a few months before you start to take the HAART seems like a good idea. If you don't need it right away, of course. Also, it is sometimes possible to get each month's medicine a few days in advance, shorter than 30 days - and after awhile the reserve builds up.
Also, some people with a bit of cash can afford to buy generic Atripla which is produced in India. Its not free, but still a fraction of the cost of Atripla in some countries.
You seem so anxious about a lot of things. You know, anti anxiety medicine is not "losing control" of your life or mind - just like taking HAART is not losing control. You might want to reconsider some mental health medicine - if it is available - to get your anxiety down to where you can take actions for your present and future - rather than being frozen.
Since you are so afraid of a cutoff in medicine supply - maybe you need to plan way ahead now to get a big reserve. How much would make you feel calmer? 6 months reserve? Maybe there is a way to get it - maybe if your blood work does not improve much, but does not decline much - you can start filling the prescription for HAART, and get ready to start taking it 6 months later.
Finally, although you say you are anxious and we can read that you are, in another sense, you are NOT in denial because here you are talking about the challenge. Some people stay in denial about their health until they are very very sick. So it seems to me you have a chance to avoid that.
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Depending on what you take, it may cost you a lot, that's why i prefer not to start meds yet. My doctor told me last time what i was suppoused to take ... it finished in "ina" (not sure if lamivudina or something like that... i think he mentioned 2 or 3 meds but i was so shocked when he said i had to start meds that i got blocked and i don't remember the names of the pills. I'll ask him again to get more info... efavirenz is among the combo i remember cause i know it causes lypo.... when i heard it got very scared.
Most probably, if efavirenz was in the combo, its NRTI backbone would either be: Truvada (tenofovir + emtricitabina) or Epzicom a.k.a. Kivexa (abacavir + lamivudina).
Either way, efavirenz is not commonly linked to lipo, and though truvada seems to be the most commonly used NRTI backbone, Epzicom is not worse if you don't have any baseline heart related risks and you are HLA-B*5701-negative.
Un abrazo y suerte! :)
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I think people should step back a bit and look at the reality of Juan's situation. It's easy to dole out advice to others from the vantage point of covered healthcare. Many people in his country don't have the luxury of building up a reserve. Hell, he's worried that he might not be able to get the meds he needs once he starts treatment. He lives in Ecuador and has to deal with the reality of his situation, not a European or American reality. Starting meds increases everyone's anxiety level even in the best of situations. Throw in the tremendous burden of economic anxiety and it's no wonder Juan's a nervous wreck . Anyone would be.
Juan's a bright guy, he needs to be proactive and informed about the reality of his situation. Once he has then folks can dispense their arm chair psychology.
Good luck to you Juan.
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Hi, the combo they will suggest me is Duovir (lamivudina+zidovudina) every 12h and efavirenz every 24h. How does it sound for you?
Ah... i have to mention that due to "technology concerns" (or rather say lack of technology or budget) they don't do genotype/resistance tests to anyone here. So it is like going to war blindfolded... they just give it a try to see if it works and if not then try some other combo... and so on and so on. It is all matter of "luck" here.
J
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zidovudine and lamivudine together are marketed as Combivir (http://www.aidsmeds.com/archive/Combivir_1083.shtml) in the US. Follow the links within Combivir to read the separate entries on both of those drugs. There is a lipo risk with zidovudine and both a lipo and peripheral neuropathy risk with lamivudine. There are similar issues with almost all NRTI class medication however, so it's just a risk and not a given, and I've known plenty of people that have taken these medications with no issue. However, because there's much less risk of these two side effects with Truvada that's why it's currently the cornerstone for every CDC "preferred treatment" guideline regimen.
While most likely the combo med Truvada isn't available in Ecuador, I would ask your physician if the component drugs of tenofovir and emtriva are available, and if so I would combine those with efavirenz, as that would be the same as starting with Atripla.
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Is it possible for you to get a list of all the available drugs that you would have to choose from?
Shouldn't they have generic Atripla (Viraday) in Ecuador? If not, Miss P makes a good suggestion.
I would avoid zidovudine (aka retrovir, AZT). Epzicom (aka kivexa) is a very good alternative in my opinion.
Are you able to get a list of all the meds that would be available to choose from?
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I would ask your physician if the component drugs of tenofovir and emtriva are available, and if so I would combine those with efavirenz, as that would be the same as starting with Atripla.
Well Philly i am not sure i can "customize" my options here, nor being able to decide what i want to take. Although I'll play my cards.
Is it possible for you to get a list of all the available drugs that you would have to choose from?
I can ask to those who are related with this about that list... but i don't think they'll let me choose what i want to take. Give me one or two days and i will try to get the list.
J
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According to the 2007 guidelines at the webpage of the Ministry of Public Health of Ecuador, these are the currently available meds:
NRTI's: AZT, 3TC, D4T, DDI and also ABC, TDF and FTC
NNRTI's: EFV, NVP
PI's: NFV, SQV(/R), ATV(/R)
AZT + 3TC + EFV is the preferred combo for treatment naive patients.
Alternative combos are: DDI + 3TC + EFV, D4T + 3TC + EFV and ABC + 3TC + EFV.
It seems the guidelines also contemplate the possibility of using TDF + FTC + either a PI or a NNRTI, and also D4T+ 3TC + NVP.
Given that possibilities, I would try to find out how strongly are that guidelines enforced, and try to convince your doctor to put you in one of the following combos:
Either (FTC + TDF) or (ABC + 3TC) + either EFV or ATV/R
Bottom line is we don't know exactly what degree of choice (if at all) you'll have in deciding your combo, but all of the combos I told you above are fairly well tolerated and effective, so try to make your point to your doctor and hope for the best!
The wording of the guidelines makes me believe the one you could get more easily is ABC + 3TC + EFV. If you finally don't have access to the other ones I told you, chances are this combo may be quite good for you if you tolerate well efavirenz, don't have hypersensitivity to ABC, and don't have any heart related risk.
Anyway, suerte y al toro! ;)
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J, you want to stay away from the D drugs if you possibly can. Videx & Videx EC (didanosine, ddI) and Zerit (stavudine, d4T) are both strongly linked to peripheral neuropathy and lipo and are rarely used in developed nations these days because of this fact. Most of our LTS here who suffer with PN and lipo were on these drugs back in the early days.
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As mentioned by others but I want to stress again: abacavir is an excellent drug but it does require a test to make sure that a person is not allergic to it. Since there are cost cutting measures in Ecuador I hope they don't ignore the abacavir sensitivity test in order to save money!
I have a friend on it (as part of Epzicom, Kivexa) and he is doing great, no side effects, undetectable and over 1000 CD4s. He's on Reyataz/Norvir/Epzicom (although Reyataz does not have to be boosted when used with Epzicom).
AZT (retrovir/zidovudine) is probably not as bad as the ones that Ann mentions but I would avoid it for the same reasons that Ann says.