POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: postsingular on November 30, 2012, 02:01:51 pm
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Hello everybody. This is a hard post for me to write. I just read the forums for an hour, and you all inspired me, I feel ready to talk about having HIV now...
I was diagnosed HIV+ 5 years ago. I'm not taking meds yet. My numbers are fairly stable (I'll post these below). My doctor is an HIV specialist, and he basically let me decide if I was ready to start treatment. I have anxieties about starting meds, although it sounds like the latest treatments are very effective with only minor side-effects in a lot of people.
I feel fairly healthy overall, but I've had lots of minor health issues & irritations along the way. My cold sores have been numerous & painful, I'm taking lysine which helps somewhat. I had a fungal infection on one foot that required oral medication. I just battled jock itch (I'm not sure where that came from, to be honest). I had a painful lung infection in 2008, I woke up with a crushing chest pain and felt like i was dying. Etc.
So, my questions are: After becoming HIV+, did you experience a downturn in your overall health (cold sores, fungal infections, ??) After starting treatment, did these infections & things mostly disappear?
Thanks!
date / CD4 / viral load
2007/08 484 UD
2007/10 476 97
2008/01 571 189
2008/04 448 883
2008/07 492 190
2008/10 676 570
2009/01 539 3010
2009/04 597 682
2009/07 821 294
2009/10 537 1210
2010/01 509 1420
2010/04 440 2600
2010/07 505 1460
2010/10 470 902
2011/01 476 603
2011/04 484 909
2011/08 464 1960
2011/12 460 1490
2012/04 382 1270
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Before I started meds 5 months ago I was getting thrush monthly (including in my belly button randomly), had white patches all over my tongue, lumps in my neck etc etc. These have all stopped since starting meds so just start and don't be worried ok?
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Thanks, TabooPrincess! That anecdote is helpful...
If the new thinking is to start treatment immediately, then I should probably just do it. I have a blood draw next week, I'll discuss my options with the doctor.
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One piece of advice, research all the medication options available to you. Lot's of people just seem to go for the default treatment without finding out what is available for them.
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One piece of advice, research all the medication options available to you. Lot's of people just seem to go for the default treatment without finding out what is available for them.
Thank you, I will!
My (former) partner (who was HIV+ also) took a drug cocktail which needed refrigeration. That was an issue when we travelled overseas, arranging the pills next to ice packs so they stayed cool. I'd like to avoid dealing with that... Anyway, I'll definitely explore the options...
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My (former) partner (who was HIV+ also) took a drug cocktail which needed refrigeration. That was an issue when we travelled overseas, arranging the pills next to ice packs so they stayed cool. I'd like to avoid dealing with that... Anyway, I'll definitely explore the options...
That was most likely the old formulation of Norvir (http://www.aidsmeds.com/archive/Norvir_1561.shtml), when it came in gel-caps. It comes in a hard tablet form now that does not need to be in the fridge. There are some people who still take the gel-caps, but they are becoming more and more rare.
Regarding the cold sores, you do know that cold sores are herpes, yes? There is a med (acyclovir) you can take for it either when you feel an outbreak coming on, or daily as a prophylactic (preventative).
I take acyclovir as a prophylactic and I wouldn't be without it. I also started getting outbreaks more and more frequently after hiv and once I started acyclovir they're pretty much a thing of the past, unless I run out or forget to take it (particularly during times of stress).
There is also the factor that acyclovir seems to have some anti-hiv properties. You might be interested to read one of Peter Staley's blogs - Acyclovir -- One Reason Why I'm Still Alive? (http://blogs.poz.com/peter/archives/2008/09/acyclovir_one_r.html) He includes a study of the effects of acyclovir on hiv. I posted a response to that blog and included another report on the same study, from a different source.
Another factor to consider about acyclovir is that if you take it as a prophylactic, this means your body has one less virus to actively fight. So it takes some of the pressure off.
Regardless of whether or not you opt for hiv meds at this time, you should talk to your doctor about acyclovir. You can read more about herpes and acyclovir in the Herpes Lesson (http://www.aidsmeds.com/articles/Herpes_6789.shtml).
Acyclovir is tolerated well by the majority of people and there are very few side effects associated with it. For me it's been like taking nothing more than a multivitamin, and the benefit (no more outbreaks) is priceless. Speaking of priceless, acyclovir is widely available as a generic, so it won't break the bank if you take it daily.
PS - I've been taking prophylactic acyclovir for about eight or nine years, but I've only been on hiv meds since this past July. I still take the acyclovir, so I have no idea if the hiv meds have had any effect on the frequency of my herpes outbreaks.
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Thanks Ann, this is great information. I have taken retrocyclovir, my doctor made sure I kept some on handy for when I felt an outbreak coming on. It did seem to shorten the duration of the cold sores.
I had no idea there was a prophylactic medication for managing cold sores. I'll definitely ask the doctor about that. Nice to learn that it may also combat HIV!
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You're welcome, Post.
Retrocyclovir is acyclovir.
If your doctor gives you the go-ahead for prophylactic acyclovir, be sure to request that he prescribes it as a generic. It will keep your costs down and is every bit as effective as the more expensive brand name acyclovir (Zovirax).
Taking acyclovir "as needed" will definitely shorten the duration and often the intensity of outbreaks, but it won't stop them completely like taking it as a prophylactic will. If you're getting outbreaks more than once or twice a year, it's just too darn much (IMO), particularly if you're also poz.
Taking it as a prophylactic will also help prevent you from giving herpes to your partners. You can transmit oral herpes to someone when engaging in oral sex so we're not just talking about kissing mouth-to-mouth. Genital herpes is NOT fun, believe me, and no partner is going to thank you for this particular "gift".
You can transmit herpes before you are fully aware that an outbreak is imminent and also when the outbreak appears to be healed. It's not just about when you have an obvious sore.
Prophylactic acyclovir keeps herpes inactive in your spinal cord (that's where it hangs out - it travels down the nerves to the site of the outbreak on your skin/mucus membrane) - it's when it is able to travel to an outbreak site that it is a problem for your partners.
PS - the fact that herpes attacks nerve endings is why you feel a tingling and/or itching before a blister appears. It's also why herpes is so darn painful.
Also, another benefit of taking prophylactic acyclovir is that it may prevent you from getting shingles - aka herpes zoster (http://www.aidsmeds.com/articles/Shingles_6797.shtml) (same family). Acyclovir is effective against both viruses. If you've had chicken pox in the past, you'll be prone to getting shingles at some point in your life.
edited to add herpes zoster lesson linky
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I'll talk to my doctor about this. I definitely want to avoid spreading oral herpes as genital herpes. Yikes.
My appointment with the doctor is on Friday, I'll post another update afterwards.
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LOL "Yikes" indeed. Genital herpes (and anal - yes, you can get herpes on your rosebud) is definitely a pain in the nether regions. Literally and figuratively!