POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: exeejoe on May 22, 2013, 07:45:58 pm
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Hey guys,
I tested positive in November 2012 after the last negative test sometime in 2010. I dont have my numbers right but I remember my cd4 count above 500 still.
I have one good friend who took me in for the test after we learnt my ex-girlfriend had been terribly sick. He is the only guy who knows about my status for now. Since then I have done plenty to educate myself about what all this means to me. I must say I am pretty upbeat about my chances of surviving and living positively with HIV. Thanks to this site among other things.
I am due for a visit with the doctors to take further tests, like kidney, liver and god knows what else and its going to cost me a futune I do not have, as I intend to start early on my medication but that too is a very grey area as to how I will be able to pay for it.
I live in Lesotho, a small resource strapped country in Southern Africa. I haven't gotten around to figuring out how all the HIV medical roll out government programme works because the health system is in such shambles (well maybe not) and the stigma is something I don't wanna deal with just yet.
To the point; between financing my regiment with limited financial resources or a government support programme to choose from, what are my chances of getting good quality treatment? I read on this forum that there is quality treatment and there is well.... not so quality medication out there. Frankly this is the only thing that seems to bug me much about my new reality. is there such a thing as good medication and less than good medication (generic medicines???)
I have since been ok really, just thrown myself into my work harder and smiled around wider! Only thing been feeling this strange sensation on my thigh muscles could this be the start of Peripheral neuropathy? I know I should chill and trust me I am chilled but anybody know anything about PN starting this early on?
Apologies if I started a new thread unnecessarily, still cant figure out how this works and am afraid to step on toes. Any hey, all you guys here are the best! Some nights I sit here for hours just soaking in the love! cheers.
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welcome to the club ::)
i suppose ur post was directed towards members living in ur part of the world. Sorry I cant provide much info in this regard but your health care system would be a good start for information and you know that already.
So try to chill out and use this time to internet site and others as you have been doing to really get yourself up to speed on treatment options and meds including generic meds......knowledge is power. Take control......you will need to if you want to live a long and happy life.
Perhaps a quick road trip to SA from time to time may be on the cards to access generic meds. As you know SA has been dealing with this for a looooong time and would be expected to have all the information re this. Dont think of that as much of a burden if this is what you have to do. There are many of us here who are required to travel internationally and quite far (across time zones) to access quality meds and specialist help in our attempt to fly under the radar of local authorities of where we live. Also dont get pissed off to read of others who bitch about having the hassle of travelling across their city to access care......they live in another world ::) ::)
You have made the right first step by organising a doctor session so congrats.....you are well on your way. One word of advice....just continue to be proactive in managing your own health care and with knowledge you will be in a position to have proper discussions with your doctor and know what is acceptable levels of care. This site and others have all the infomation. Its really up to you!
Good luck on your new poz journey and no PN would not be expected to be an issue.
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To the point; between financing my regiment with limited financial resources or a government support programme to choose from, what are my chances of getting good quality treatment? I read on this forum that there is quality treatment and there is well.... not so quality medication out there. Frankly this is the only thing that seems to bug me much about my new reality. is there such a thing as good medication and less than good medication (generic medicines???)
Yes indeed.
A) there is the best and the newest medicine,
B) there is standard accepted medicine that has been around quite awhile and which many people do fine on, and
C) there is not very good medicine that has disappeared from the developed world but still used in poor or developing countries.
You are going to have to bite the bullet and find out exactly how access works in your country, find out all the different ways that HIV+ people access treatment. Because, depending on the way of access, I can imagine that there might be quite a range of different medicine available.
As for generics, there ARE generics for the category B), mentioned above. For example, the pill "Atripla" used by so many people is composed of medicine that has been around quite awhile, and there are generic versions available via Indian companies.... These generics would be identical to the "name brand" drug Atripla and equally effective.
There are no generics for the newest medicine. But I would guess, there might be instances in which even the newest drugs are available in developing countries, because some of these drug companies were forced into offering radical, multi-tiered pricing... The extent this exists, I don't know.
You have to reach out to people in your location to get the exact information. When you have it, post it in here. There are some very knowledgeable members of this forum who can give you the low down on just about any drug that might be available.
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Hi Joe, welcome to the forums.
Are you in touch with any ASOs (Aids Service Organisations) in your country? You can find what's available where you live by using the world-wide database at aidsmap.com.
http://www.aidsmap.com/e-atlas
There were results for ten agencies (and their contact details) listed when I entered Lesotho in the fourth box down (on the page I linked you to above), leaving all the other boxes as they are.
Good luck. I hope you can get some answers soon - and I wish I could be of more help.
Ann
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Hello
Treatment access now in Lesotho is good. Drugs are good but old (ie they work) and standard of care modern. Expect queues as per any African public heath system.
Red Cross has centres in Sebapala (Quthing district), Mapholaneng (Mokhotlong district), Mafeteng (Thanbana Morena district), Kena (Maseru rural district) and Thaba-Tseka (Thaba-Tseka district). Good starting points. Walk up referral. Will need to do a point of care HIV test.
There are other treatment programmes too, esp. for mothers/mothers-to-be.
Note for adults 1st line therapy is nevirapine-3TC-AZT. There's nowt wrong with this in terms of efficacy but it's not the best thing to be on AZT. Second line is d4T which is worse. Tenofovir is available and likely to be common in a year or two. Private/NGO providers might be using it now.
Good luck.
- matt
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Thanks all you guys. Matt, lovely to here from someone who knows my homeland (and available options) more than I do!
"Note for adults 1st line therapy is nevirapine-3TC-AZT. There's nowt wrong with this in terms of efficacy but it's not the best thing to be on AZT. Second line is d4T which is worse."
Now this is the kind of thing I dont wanna be ladled with now!
Ann thank you so much, I am checking out the places returned by my search on http://www.aidsmap.com/e-atlas and I have followed your informed and kind posts with great admiration. You are such a sweetheart!
friskyguy, you are too kind. Thanks for the warm words of welcome. you guys are just great. And to you 400+ guys that read this thread, I know you care too! ;)
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Hey mecch, I didnt leave you out on my gratitude list by design, ;) what you are listing is exactly what I needed to hear. You see, I am good doing B "standard accepted medicine that has been around quite awhile and which many people do fine on" but I dont wanna find myself in C now! "there is not very good medicine that has disappeared from the developed world but still used in poor or developing countries."
Will certainly do post what I come across.
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Joe, you're more than welcome! And thank you for your kind words.
That's what this place is all about - helping each other as best we can and offering moral support. I see you're already offering support to other members and thank you for that. The give-and-take keeps this place going.
As regarding starting treatment, in the UK many doctors still don't want to treat people with CD4s above 500. The current guidelines state treating between 350 and 500, and many doctors interpret that as waiting until you're consistently in the mid-300 range before starting treatment.
I believe the UK guidelines are soon going to change and be more reflective of the US guidelines (start immediately after diagnosis), but please keep in mind these are guidelines in countries where drugs like AZT and d4T are no longer (or very rarely) used.
I went for eleven years after diagnosis before I went on meds (with hindsight, I know when I acquired my infection - '97 - so it was fifteen years after infection). It took me pestering my doctor for a couple years about starting, because my numbers were good.
After years of being in the 500-(low)700 range, I'd started being in the high 300, low 400 range but because I kept popping back up over 500 occasionally, he was still reluctant to let me start.
He's an hiv pharmacologist and his thing has always been - "We can't say for certain what long term effects even some of these newer drugs may have. Your numbers are good, wait until you really need to start".
Thing was, I did feel good for years, but beginning around 2010 or so my body started letting me know that it was time for meds, despite the fact that I "looked good on paper" regarding my quarterly lab results. "Looking good on paper" was why it took so long to convince my doctor it was time for me to start.
I finally started meds almost a year ago (July 2012) and while I wished I'd started a year or two earlier, I do not for a minute regret not going on meds back in 2001 (after diagnosis).
The reason I do not regret starting at diagnosis is because at that time, the standard first-line treatment in the UK was Combivir plus efavirenz. Combivir is AZT and 3TC in one pill together. Efavirenz is a very good drug and is similar to nevirapine. Nevirapine is also very effective, but it has fewer side-effects than efavirenz for most people.
I wanted (like you) to go on meds as soon as possible after diagnosis, but I'm so glad my doctor talked me out of that. If I knew then what I know now about drugs like AZT and efavirenz, I don't think I would have felt the same way.
Again, I absolutely do not regret going on meds right after diagnosis, but I do wish I'd started a year or two earlier than I did.
The reason I'm telling you all this is because if you find your only current combo option is one that includes AZT, and your CD4 stays above 350, I would recommend that you wait until Truvada is readily available to you. Newt says this should happen within a year or so, and Newt is someone who would know.
Provided your CD4s are good (350-400 or more), in my opinion it would be better to wait for Truvada than to start now with anything including AZT. Remember, this is just my opinion. Do your own research too and think about it.
And as with anything, be sure to also discuss this with your doctor.
I'm happy to hear you found the e-atlas at aidsmeds.com useful. Here are some more links you might find helpful:
Treatments (http://www.aidsmeds.com/list.shtml) - has links to information on all hiv meds in use today, including some that are still in the clinical trials stage. Many of the meds have more than one name. The Brand name is always capitalised, and the generic name is always in lower case, unless it is at the beginning of a sentence. Your doctors will be more likely to refer to the meds by their generic names, except in the case of pills that are a combination of two or more meds, like Truvada.
Lessons (http://www.aidsmeds.com/articles/Introduction_4702.shtml) - does what it says on the tin. Information about most aspects of living with hiv. Check out the menu on the right-hand side of the main Lessons page.
Check in as often as you can and let us know how you're doing. :)
Ann
edited for clarity
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Ann,
Firstly, let me just say a huge thanks. I've not replied to your posts before but I read them almost daily. There are some wonderful people on these forums and your messages (new and old) have made a massive difference to my own 'journey' (gah, that sounds so twee!). Anyway, I can't believe people tell you and your comrades this enough: you're making a huge difference to people, even when you'd don't know it.
Now, with the prolegomena done, to my point. Like you, I'm also in the UK as you may be able to tell by my handle, and I was really concerned about getting the treatment I wanted. You say that in the UK some doctors are unwilling to start treatment until people's CD4 count is regularly around mid 300s. This was exactly my concern.
Before going to my second and third meetings with my doc, I went through the clinical guidelines (which are a massive drag to read, but I persisted. This was before Atripla technicolor dreamoscope!). Tey can be found here:
http://www.bhiva.org/documents/Guidelines/Treatment/2012/hiv1029_2.pdf
My CD4s were just above the mid 400s and I anticipated a struggle (having heard such horrible things about "our NHS" as labour politicians are wont to call it). The clinical guidelines are quite clear that the patient must be heard as part of the decision process. There are multiple reason to start the meds before the 350 threshold is reached and most importantly the cohort studies indicate that it's probably wise to do so.
I was awe-struck by the attitudes all of my doctors (and I had three circling over my shaking self!). They couldn't have been more supportive. They gave me options to join ongoing studies, talked about current research and the nurse practitioners were some of the kindest people I've met in hospital (even helped me conquer my fear of needles - what I wimp I am!!!). And a month in I'm doing great, all my numbers under control and hopefully with a rising cd4 count too (we'll find out in a month or so).
So for anyone going through any nonsense with their doctor, best arm yourself with the clinical guidelines if you want to start medication sooner rather than later. Where there's a will, there's a way.
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Hey Ann, great stuff that you say there. And yes, I have been toying with the idea of waiting as well. I will go in and discuss this matter with my doctors (soon as I can scrape a few hundred rand together hahahahha!) the Treatment and Lessons links you graciously suggested what do you think I have been doing since October last year? :) Been reading Ann, been arming and empowering myself all this time. Yeah thanks, my decision to wait is an informed one in all respects. Cant thank you guys enough.
London, you will find this strange, but this is true, immediately after responding to your wonderful post I come check on my thread if there is anything new, bang, I find you posted here as well. Thanks mate, you inspire me with your poz attitude. Its the way to go, given the amount of good things happening around HIV nowardays, guys just ought to chill! Maybe me an Ann should take you up on that shared pint soon!