So, I have HIV and i have some questions

[Starfox]

So, I waited until I got my second bloods back to confirm if my first positive was a reality and it is I have HIV. Two weeks I think i was walking around shell shocked but Im getting over that. I have a positive attitude along with a positive status so Im simply just going to go about my life like this didnt happen and live my life to the fullest, but obviously I need to be on top of my health for life now which is fine because this is me anyway.

Before my health started to deteriorate I was really into fitness and training/gym, looking after myself but the last time i went, over two months ago which in itself was a return to the gym from a previous episode of bad health (all hiv related sure) and me and my ego made me over do it in the gym and a few days later after a small bit of muscle trauma I crashed and had such a bad downturn in health getting violently sick with having weird 'stomach/bacterial like bugs' Ive no idea what was happening but a lack of T cells and immune system responses is like leaving the gates open and it was that that made me get tested...

I have some questions. How soon do you think I should wait before I go back to training? Because i start my meds this week.

I lost allot of weight and muscle mass over the last two years because of this, being realistic can i get this back? Or am I now a salmon swimming up stream?

My doctor also wants me to do this trial along with starting my hiv meds (flashes of scary HIV past trials emerge). The trial, and ill quote from the form in front of me ''A multi-centre, prospective, randomised trial of short course alendronate therapy or placebo combined with vitamin D and calcium to prevent loss of bone mineral density in antiretroviral-naive, HIV-1 infected subjects initiating antiretroviral therapy'' What do you think? I voiced my concerns about these meds but my doctor said they use them already for people with osteoporosis and alike..

Now, ive also noticed hair loss the last few weeks with me, nothing at all obvious but if i run my hand through my hair i will take away a few each time and this is very new to me its like my hair is thinning and falling out lightly. Is this HIV or just stress? there is no male baldness in my family not until you reach late years anyway and im only 31.

I also have slight breathing issues sometimes, and slight pains in both sides of ribs which also feels like weight is being pulled off me from there..   

I guess to finish up what Id really like to know is a few months into these meds can i get back to living a full healthy life? push my body training within reason and enjoy a normal life or will i get easily sick regardless and be limited?

Thanks for any advice
Shane

[Ptrk3]

Greetings Starfox:  sorry about your diagnosis, but it's a good thing you found this forum for support and excellent information.

There is no reason to stop fitness training solely because you have the HIV.  If you don't feel up to it yet, that's another story, so start back as soon as you feel well enough.

You don't mention your CD4 count and/or viral load.  You may want to get these numbers, so you can understand precisely where you currently stand, if you don't know them already.

These days, the protocol is to start antiretroviral medication upon diagnosis:  it's good that you are starting meds as soon as practicable and that you are within the medical system.

Your hair loss is not related to HIV.  Male-pattern baldness or hair loss can start at any age, really, and 31 isn't so young that it can't start then.  Maybe, it's stress, as you suggest, but it has nothing directly to do with the HIV.

It is realistic that you will gain weight and muscle mass, once things are clarified with your HIV meds and you are eating better and back in fitness training.

As to the medical trial that the doctor suggests, that's up to you, but it sounds like your doctor has your bests interests in mind.

In summary, once in treatment, you can expect to live a full and healthy life.  As your immune system strengthens you are not any more likely than anyone else to get ill.  You will be fine.  Take your med and live your life as you normally would.

[Starfox]

Thanks for that info its very helpful. My CD4 count is 683, and I cant remember what the viral load is but I think it was high enough, i was so focused on waiting for my cd4 count i forgot other info and of course its allot to take in. I will be meeting her again Wednesday and will get more info then. Should there be anything I need to ask?

[gorka]

I am in trial for bictegravir vs Triumeq and went undetectable win 4 weeks after starting taking meds.  Not sure what I am taking at this point and my viral load was low to beging with.  But based on my Dr's feedback everyone in this study is doing really well on either drug and follow ups and meds are free

[Ptrk3]

Starfox:  Your CD4 count is very good, so you shouldn't worry about any opportunistic infections.  In fact, you likely won't even need to worry about your CD4 counts at all:  the count is that high.

Now, you'll just need to focus on getting your viral load down to undetectable, from whatever it is now.  That will happen fairly quickly, once you are on anti-retroviral meds.

Once you have an undetectable viral load, your CD4 count will probably rise more, but don't be surprised if your doctor doesn't even order a CD4 count on your next blood test (because your current count is so good).  It's your viral load that matters more now.  Your short term goal is to get  to "undetectable."

You are in good shape.  Take your meds and live a long, healthy, and fitful life!

[mecch]

Hi starfox. Interesting pseudo.  Welcome to this forum.

[leatherman]

My CD4 count is 683

I cant remember what the viral load is but I think it was high enough, i was so focused on waiting for my cd4 count i forgot other info and of course its allot to take in.

FYI, focusing on your cd4 count is a huge waste of stress and time. You have a great cd4 count and very soon might never need a cd4 count taken again.

These days once someone has been UD for 2 yrs or more, cd4 labwork is done fewer times a year (1 to 2 times) because the cd4 isn't a very good diagnostic test for someone who is UD. Matter of fact, if you reach >500 for 2 yrs running (hello, that could easily be you in a short amount of time!) , the newest CDC guideline says that you do not even need to ever test your cd4s again as long as you are UD

After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)


here's a link to some more cd4 info you should know.

6. after your cd4s are above 200, you have passed the danger zone for OIs. The cd4 number then becomes less important while have an undetectable viral load becomes incredibly important.

6. guidelines now reduce the number of cd4 testing to 1-3 times a year if the patient remains UD, while if a person is UD with cd4s >= 500, the cd4 test becomes optional and isn't worth wasting the money/resources. (Undetectable is the holy grail!)

7. the cd4 count is NOT a measure of "healthiness" (qualitative); it's simply a quantitative count at a specific point in time. People with counts in the 300 may never be ill while people above 1500 could be ill. It's just assumed that more cd4s (ie a larger immune system) should be better because their are more cells to fight infections. However, some cd4s are just more efficient (better fighters) so the fewer do more work. The catch to all this is that your immune system is based on your genetics. So blame your parents for your low or high counts.

8. There is no med to increase cd4s. All you can do is suppress the HIV (undetectable) and allow your immune system to recover to whatever it is going to recover to.

[Starfox]

Hi starfox. Interesting pseudo.  Welcome to this forum.

pseudo?

[Ptrk3]

I presume mecch means pseudonym, as in the name "Starfox."

http://www.dictionary.com/browse/pseudonym

[Starfox]

FYI, focusing on your cd4 count is a huge waste of stress and time. You have a great cd4 count and very soon might never need a cd4 count taken again.

These days once someone has been UD for 2 yrs or more, cd4 labwork is done fewer times a year (1 to 2 times) because the cd4 isn't a very good diagnostic test for someone who is UD. Matter of fact, if you reach >500 for 2 yrs running (hello, that could easily be you in a short amount of time!) , the newest CDC guideline says that you do not even need to ever test your cd4s again as long as you are UD

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)


here's a link to some more cd4 info you should know.

I never realised Viral load is the most important factor and the CD4 is not that important, ill certainly get the count on Wednesday and report back.

[Ptrk3]

CD4's are not important for you because your current count is far above 200.

CD4's (above 200) are not that important for others because once on medication, the viral load will decrease, eventually, to "undetectable."  Once undetectable, the CD4's will most likely increase.

In other words, CD4's aren't as important in terms of a medical "intervention" (i.e., taking anti-retroviral medication) because there's really nothing you can do to improve them except take anti-retroviral medication in order to attain undetectable status.  Become "undetectable" and the CD4's will take care of themselves.

[Starfox]

Do most people gain back the lost weight after going on meds? And can i gain muscle mass back too? Id just like to know how to approach training to keep fit and look well

[90szeitgeist]

I lost a lot of weight with the seroconversion. I've gained it all back. I was muscular before, I am even more muscular now. When I entered the gym again, I eased into it with very low volume, but after a month I was already pushing myself everyday.

In other words - nothing is stopping you from getting a better body.

[Starfox]

I lost a lot of weight with the seroconversion. I've gained it all back. I was muscular before, I am even more muscular now. When I entered the gym again, I eased into it with very low volume, but after a month I was already pushing myself everyday.

In other words - nothing is stopping you from getting a better body.

Thats all I needed to hear thanks

[CaveyUK]

Bottom line, there is nothing stopping you training right now.

As for weight gain....well weight gain is common when people start ART. Not 100% sure why, but part of it may be a change to the body's metabolism once it doesn't have to spend all it's energy fighting a rampant virus.

My situation is a little different. I was always fairly 'large' (think 'rugby player' large) and ate a LOT. I was always amazed that I didn't pack huge amount of weight on as things stayed static no matter how much I indulged - and I did. Then starting treatment for HIV, I saw pounds being piled on and all my shirts getting too tight. It then dawned on me that if I *hadn't* been eating like a horse pre-diagnosis, I would probably have seen a fairly dramatic weight loss, which would have probably pushed me to test a bit sooner. Now, of course, I wish that I HAD dieted pre-diagnosis and lost some weight to start with, as I look way too obese now. Hopefully gym and diet will sort that out!

[leatherman]

nothing is stopping you from getting a better body.

the $10 a month I spend for Planet Fitness and the $10 a month for my season pass to Carowinds Amusement park is the best money I spend for my health. All the exercise and walking has me at 140 lbs, which is just 10# more than I weighed in high school, and more muscular. You'd never know that I had wasted away to skin and bones (90lbs) when I was all aidsy.

Now if I could only get all those damned slow-ass teenagers the hell outta my way, I'd have a much better time getting from coaster to coaster at the park. LOL At least there's no one in front of me on the treadmill. LOL

[Starfox]

Bottom line, there is nothing stopping you training right now.

Well there is actually because last time i went to the gym i got really run down a couple of days later and then very sick and it lasted 6 weeks so im pretty fearful of that I need to build my immune system back up before I go back into training imo

[CaveyUK]

Well there is actually because last time i went to the gym i got really run down a couple of days later and then very sick and it lasted 6 weeks so im pretty fearful of that I need to build my immune system back up before I go back into training imo

Your immune system doesn't need to be 'built up'. It's currently well within 'normal' range.

Look, no-one can guarantee that you won't go to the gym and pick up some bug that is doing the rounds - which is likely what happened previously. But if you want to re-start training, I don't think there is anything stopping you. Certainly not HIV anyway.

[CaveyUK]

I never realised Viral load is the most important factor and the CD4 is not that important, ill certainly get the count on Wednesday and report back.

Just to avoid confusion here....

At Diagnosis, knowing the CD4 count is the most critical factor, as this will determine the level of damage to the immune system as well as provide a clinical baseline. Under 200 and it's in the 'danger zone' where opportunistic infections can appear, and as a result additional preventative medication is provided.

Knowing the Viral Load at this point is important for certain clinical decisions around medication regimen, but doesn't really provide a great deal of information to the patient - aside from knowing the starting point (baseline).

Following commencement of treatment, The Viral Load is the most important factor, as this should be reducing rapidly. The reduction in VL *should* see an increase in CD4 count which is reassuring however really only important from the perspective of monitoring any count < 200 and determining if preventative medication needs to continue. This will be the case until the CD4 count is > 200 (or more likely 250 to be on the safe side).

Once UD status is reached, and CD4 count is safely out of the danger zone, only the Viral Load has any clinical importance as this needs to stay undetectable. Once the virus is fully suppressed - the meds are doing their job and additional monitoring of CD4 is largely unnecessary (although is still often performed). This is because once in normal range the only way the CD4 will reduce as a direct result of HIV is in the case of treatment failure, which will be identified through the Viral Load count anyway. Remember - the medications do not directly affect CD4 cells, just the virus.

So at present, your CD4 count is very good indeed and can pretty much be disregarded from this point on. Your VL count isn't *that* important right now, but once you have been on meds for a while that is what you need to focus on because you want it to get to undetectable status pretty quickly - and stay there.

[Starfox]

Your immune system doesn't need to be 'built up'. It's currently well within 'normal' range.

Look, no-one can guarantee that you won't go to the gym and pick up some bug that is doing the rounds - which is likely what happened previously. But if you want to re-start training, I don't think there is anything stopping you. Certainly not HIV anyway.

When you train, and especially tear muscles your body needs to repair that damage and use allot of resources and i overdid it. Now because my body was busy fighting off this nasty virus and trying to repair my body from training some bug took that opportunity and knocked me down and for 6 weeks. This is what Im saying. If i let the meds do its job and in a few weeks Ill be good to go back to proper training again.

[Starfox]

Just to avoid confusion here....

At Diagnosis, knowing the CD4 count is the most critical factor, as this will determine the level of damage to the immune system as well as provide a clinical baseline. Under 200 and it's in the 'danger zone' where opportunistic infections can appear, and as a result additional preventative medication is provided.

Knowing the Viral Load at this point is important for certain clinical decisions around medication regimen, but doesn't really provide a great deal of information to the patient - aside from knowing the starting point (baseline).

Following commencement of treatment, The Viral Load is the most important factor, as this should be reducing rapidly. The reduction in VL *should* see an increase in CD4 count which is reassuring however really only important from the perspective of monitoring any count < 200 and determining if preventative medication needs to continue. This will be the case until the CD4 count is > 200 (or more likely 250 to be on the safe side).

Once UD status is reached, and CD4 count is safely out of the danger zone, only the Viral Load has any clinical importance as this needs to stay undetectable. Once the virus is fully suppressed - the meds are doing their job and additional monitoring of CD4 is largely unnecessary (although is still often performed). This is because once in normal range the only way the CD4 will reduce as a direct result of HIV is in the case of treatment failure, which will be identified through the Viral Load count anyway. Remember - the medications do not directly affect CD4 cells, just the virus.

So at present, your CD4 count is very good indeed and can pretty much be disregarded from this point on. Your VL count isn't *that* important right now, but once you have been on meds for a while that is what you need to focus on because you want it to get to undetectable status pretty quickly - and stay there.

Really great info this has really explained allot for me. Thanks CaveyUK

[Starfox]

So I went back in today expecting to be given my meds but I wont start them just yet, another 2-3 weeks because of a delay apparently waiting on the resistance test but i got all the info I needs, just look at my crazy high viral load count...

VL      - 180,000+
CD4    - 686
CD4% - 23%
CD8    - 1636
CD8% - 55%
H/S Ratio - 0.42





And the HIV meds I am about to start are called Stribild x1 per day.

So, The VL is alarming but ill be starting meds within a month and things will get better. Any info on this would be great. Don't feel you need to be sensitive about it because im completely ok and in a good place

One question though, why is the current life expectancy for someone diagnosed with HIV in Ireland as of now -13 if that persons gets to 'Zero' (<40 VL per MM). What damage could the virus do? Or is it a case of the meds side effects?

Thanks guys

[Ptrk3]

Your CD4's are in great shape, so another couple of weeks without meds is fine (until recently, the protocol for someone with your CD4 count would be not to even start meds!), so don't worry about that. 

Once you start with Stribild, your VL will plummet and will be undetectable within a few weeks or a month or two, so don't worry about that, either.

As for life expectancy, those studies are done in the aggregate and mean nothing about any particularly individual.  Those studies include deaths from all sources, including being hit by a bus or choking to death on a chicken wing--so, don't worry about that either.  Besides, your CD4's at the time of diagnosis, put you on the near normal "life expectation" under any circumstances.

Just take your meds when you start and you will live a long and healthy life!

[Jim Allen]

With numbers like that 2-3 weeks delay to do correct resistance testing is not going to make any difference. You will be grand

One question though, why is the current life expectancy for someone diagnosed with HIV in Ireland as of now -13 if that persons gets to 'Zero' (<40 VL per MM). What damage could the virus do? Or is it a case of the meds side effects?

Thanks guys

- 13 years ... how did you get that number?
Wait -13 years its sounds so familiar I heard that number before.

http://www.aidsmap.com/Life-expectancy-in-HIV-positive-people-in-the-US-still-lags-13-years-behind-HIV-negative-people/page/3040314/

My own personal view on this, or how i digest this 1 study is taking factors into account they could only find found a 5 year difference, and they did not factor in all the risks and reasons, they looked at 1996-97 and 2011. 

I don't live in the past and things change, this is 2016 and you are taking today meds not yesterdays. Now i can reduce my risks and who is to say i could be hit by a bus in the morning or perhaps not.  So overall its very interesting but something to read and than move on.   

http://www.aidsmap.com/START-study-shows-that-people-starting-HIV-treatment-earlier-have-better-quality-of-life/page/3041727/

Life Expectancy for Young People With HIV Is Nearly Normal https://www.poz.com/article/life-expectancy-24972-2090

Just take your meds when you start and you will live a long and healthy life!

 

Jim

[paintedroom]

Hey Starfox,
I had similar questions regarding resistance training 3 weeks ago when i started meds(CD4 50).The Doctor said without reservation to get on with it and enjoy.It has no bearing on CD4.
I too had lost a lot of weight but for different reasons..i think.I was in a physical job where every day was a 10 hour day.It was bloody murder.Toward the end i was falling asleep without a problem at both breaks and feeling pretty diabolical.I lost about 2 stone(28lbs) ..i was 13st 2lbs(6ft 2") and looking sick and haunted.Since then,i dropped all vices and got back on a diet i had been on years before(5 meals per day + supplementation) and am now 15 st 5 lbs..which is pretty quick and reassuring.Some of it may be muscle memory as years ago i was as high as 256lbs and on a  20 eggs a day kinda thing(In the fitness industry for many years).
In short,try not to overtrain..rest days are important for hypertrophy.You can train balls to the wall as long as you have a rest day between.The body never lies..listen to it.
It doesn`t hurt to supplement but check with your Doctor first.That`s more important than you think.For me,a whey protein isolate,a multi vit and selenium are all good with the Doc.

Best of luck,P.

[CaveyUK]

So I went back in today expecting to be given my meds but I wont start them just yet, another 2-3 weeks because of a delay apparently waiting on the resistance test but i got all the info I needs, just look at my crazy high viral load count...

VL      - 180,000+
CD4    - 686
CD4% - 23%
CD8    - 1636
CD8% - 55%
H/S Ratio - 0.42

Not particularly crazy high. Some people have had VL's registering in the millions.

The other numbers you quoted are not really relevant to you here, so don't waste too much time trying to read anything into any of them. Even the CD4 is not really that important given it is so high. So focus on the VL only from this point on.

And the HIV meds I am about to start are called Stribild x1 per day.

Good, modern drug. Just make sure you adhere to any food requirements, as it does need food to boost up to the correct levels.

So, The VL is alarming but ill be starting meds within a month and things will get better. Any info on this would be great. Don't feel you need to be sensitive about it because im completely ok and in a good place

As said, the VL is pretty standard, not alarming. You will be amazed by the speed in which the meds reduce it too.

One question though, why is the current life expectancy for someone diagnosed with HIV in Ireland as of now -13 if that persons gets to 'Zero' (<40 VL per MM). What damage could the virus do? Or is it a case of the meds side effects?

Big lesson - ignore studies about life expectancy. They will take into account populations who have other conditions, have spent years on older, more 'problematic' drugs, they will include deaths that are not directly HIV related, they will include deaths resulting from non-adherence to treatment.

No-one can predict when anyone will die. Stay healthy and reduce the risk of other problems and there is no reason you won't live a pretty much normal lifespan. An obese, heavy smoking, drug taking alcoholic who contracts HIV and then gets on treatment and starts living a healthy lifestyle will actually likely live longer than they would have done before and longer than many who are HIV negative but who have less healthy lifestyles. There really isn't a formula or study that is specific enough to you as an individual to be informative.

The side effect profile of modern HIV meds is really good these days. Even where long term side effects appear, these can be picked up early through monitoring and drug switches or treatment will stop them becoming a major problem. So again, put this out of your mind. The biggest side-effect of HIV medication is life itself

Before it sounds like I am sugar-coating everything, I acknowledge that chronic inflammation can become an issue in later life for HIV+ folks in terms of risk for things like cardiovascular or mental problems appearing slightly sooner than the general population, but these are risks rather than being nailed-on to happen and are things that again can be monitored and treated with research underway to see how this problem can be tackled long term happening right now.

[Starfox]

In short,try not to overtrain..rest days are important for hypertrophy.You can train balls to the wall as long as you have a rest day between.The body never lies..listen to

Deffo, I need more rest in my life regardless of HIV or not, I am a very motivated person, high drive on all things life but i need to pace myself from now on

- 13 years ... how did you get that number?
Wait -13 years its sounds so familiar I heard that number before.

 

Jim

You know now that i think of it, HIV was first discovered in 1983 so -13 is pretty much just a guestimate..

There is allot of things I am looking forward, do the relentless nights sweats completely go away?

Funny enough I am actually more cautious about the Bone density trial and meds I am starting next wednesday. Its a trial at the end of the day we know how they can go

[Starfox]

How many of you have any serious problems with your bones because of prolonged medication treatment?

[Starfox]

Before it sounds like I am sugar-coating everything, I acknowledge that chronic inflammation can become an issue in later life for HIV+ folks in terms of risk for things like cardiovascular or mental problems appearing slightly sooner than the general population, but these are risks rather than being nailed-on to happen and are things that again can be monitored and treated with research underway to see how this problem can be tackled long term happening right now.

Since my guess of the initial acute infection time frame of 2 years ago I have actually had some really serious inflammation of the gut. In The summer of 2014 because of inflammation of the gut i lost 1.5 stones in a 3 week period, it was scary and tbh i thought id cancer, wouldn't you? and on and off i had bad inflammation, especially when any opportunistic infections have hit me.  My mother is celiac and has had horrendous gut (leaky gut) problems for years so even without HIV there was a high chance i would to, I should really expect a high chance of inflammation problems for the future unfortunately.

As for mental problems, can you elaborate? Do you just mean from the stress of the stigma and the burden of living with it or is it something neurological?

[Jim Allen]

There is allot of things I am looking forward, do the relentless nights sweats completely go away?

Yes.. well depends on the cause. Did you mention/report this to the doc during your visit?

Funny enough I am actually more cautious about the Bone density trial and meds I am starting next wednesday. Its a trial at the end of the day we know how they can go

? Would that be this one?

http://www.irishosteoporosis.ie/images/uploads/UCD%20School%20of%20Medicine%20UPBEAT%206pg%20DL%20PRINT.pdf

[Starfox]

Yes.. well depends on the cause. Did you mention/report this to the doc during your visit?

I Did, I am in the Mater Jim. She, Tara told me its because my body is simply working in overload to try and get rid of the virus, i do have a count of 180k 

Would that be this one?


http://www.irishosteoporosis.ie/images/uploads/UCD%20School%20of%20Medicine%20UPBEAT%206pg%20DL%20PRINT.pdf

I think so yup, I was also told there is no other trial like it so it has to be it.

[Jim Allen]

I Did, I am in the Mater Jim. She, Tara told me its because my body is simply working in overload to try and get rid of the virus, i do have a count of 180k 

Indeed, well the night sweats should drop away I would agree with her.

I think so yup, I was also told there is no other trial like it so it has to be it.

Well I could not confirm that, but the link i gave was the only study i had heard of in Ireland on the topic. I think a lot of things do factor in including lifestyle choices and when it comes to meds certain older meds and of course before anyone mentions it I might as well yes that includes Truvada. The newer version of Truvada (descovy) https://www.poz.com/drug/descovy does not have the same level of concern so that's good.

Jim

http://www.hivplusmag.com/treatment/2016/4/06/fda-approves-new-safer-hiv-drug-called-descovy

https://aidsinfo.nih.gov/education-materials/fact-sheets/22/62/hiv-and-osteoporosis

http://www.aidsmap.com/Bone-density-recovers-quickly-after-stopping-PrEP/page/3038620/

[Starfox]

Well I could not confirm that, but the link i gave was the only study i had heard of in Ireland on the topic. I think a lot of things do factor in including lifestyle choices and when it comes to meds certain older meds and of course before anyone mentions it I might as well yes that includes Truvada. The newer version of Truvada (descovy) https://www.poz.com/drug/descovy does not have the same level of concern so that's good.

I was under the impression that Truvada was one of the best available hiv meds. Did it have a concerning past?

[Jim Allen]

Its grand, even better than that.

However an improved version has been released that reduces certain issues such as bone density concerns.

Jim

(EDIT  )

[zach]

hey starfox

relax man, nothing about your numbers is alarming. your viral load isn't really even all that high. add another zero to that number, then maybe you'd get a raised eyebrow from this crowd.

13 years? thats total bullshit. you'll live to be an old man, or maybe you'll die crossing the street next week. but with modern meds, your lifespan will not be affected by HIV.

bone density... is just not something you need to worry about. you aren't facing bone density issues, they aren't applicable to you being newly diagnosed and going on modern meds.

night sweats, yeah, they go away, your doctor gave you an excellent answer on that.

stribild? are you in the USA or another developed country? if so, ask your doctor why they didn't recommend genvoya. it is replacing stribild, it includes the newer formulation of Truvada that Jim is talking about. NO, truvada does NOT have a concerning past. the roll out and transition to genvoya is ongoing, it may not be available in your area yet, that is totally ok. i only moved over to genvoya in the past month.

this part is a reality check, please don't take it the wrong way, it is well intentioned. you're scared, all this is new and unknown, i understand that. but listen, you're thinking about the wrong things because you don't know what to think about and your mind is leaping to worst case scenarios and contingencies for what if/then what. stop worrying about your life span and bone density. your fears are born of ignorance.

focus on the moment, where you at each step of this process.

just breathe, you're doing fine.

[Starfox]

hey starfox

bone density... is just not something you need to worry about. you aren't facing bone density issues, they aren't applicable to you being newly diagnosed and going on modern meds.

My doctor said that within the first few weeks/months I will likely lose 7% bone density because of the HIV meds.. so its this fact or is this a sales pitch to get me to sign up to the trial she is helping spear head?

stribild? are you in the USA or another developed country? if so, ask your doctor why they didn't recommend genvoya. it is replacing stribild, it includes the newer formulation of Truvada that Jim is talking about. NO, truvada does NOT have a concerning past. the roll out and transition to genvoya is ongoing, it may not be available in your area yet, that is totally ok. i only moved over to genvoya in the past month.

I am like Jim based in Dublin, Ireland. I will mention it to my doctor but I am sure it will be available soon.

I also am doing pretty well considering but I am just trying to educate myself and I am nearly there with regards to that. The thing is now that i have HIV everything from a sniffle to a cough to a sneeze will be blamed on the HIV lol.. ill just learn to ignore it and get on with things

[paintedroom]

Hey again,

I`m also from Dublin and am on Genvoya as of 3 weeks ago.I was prescribed it from "The guide" in James`s hospital,the dedicated Hiv treatment clinic.They are fantastic in there.Can`t say enough about them.

P.

[Jim Allen]

My doctor said that within the first few weeks/months I will likely lose 7% bone density because of the HIV meds.. so its this fact or is this a sales pitch to get me to sign up to the trial she is helping spear head?

7% ... really

Look there are a number of factors when it comes to bone density loss and the causes and things you can do to improve the situation.  Now as example the medication your starting on contains Truvada, the more modern version of this med is being rolled out and it has less of a problem when it come to bone density. Once the newer med is rolled out you can switch.

So all in all no big deal, start taking the meds, switch when a newer version comes out. Ask for it if it concerns you, and in the meantime don't worry too much. 

Jim

EDIT - Spelling sorry.

[Jim Allen]

I am like Jim based in Dublin, Ireland. I will mention it to my doctor but I am sure it will be available soon.

I had expected at this stage for it to have been already.

I`m also from Dublin and am on Genvoya as of 3 weeks ago.I was prescribed it from "The guide" in James`s hospital,the dedicated Hiv treatment clinic.They are fantastic in there.Can`t say enough about them.

P.

And there is the conformation.
Not that I would personally ever set foot in St. James's Hospital again, once was enough for one lifetime.

Jim

[CaveyUK]

Since my guess of the initial acute infection time frame of 2 years ago I have actually had some really serious inflammation of the gut. In The summer of 2014 because of inflammation of the gut i lost 1.5 stones in a 3 week period, it was scary and tbh i thought id cancer, wouldn't you? and on and off i had bad inflammation, especially when any opportunistic infections have hit me.  My mother is celiac and has had horrendous gut (leaky gut) problems for years so even without HIV there was a high chance i would to, I should really expect a high chance of inflammation problems for the future unfortunately.

Sorry, when I talk about long term inflammation I don't mean the acute stuff you are talking about, which is common in the general population. What I am talking about is chronic low-level inflammation, principally measured in inflammatory blood markers, which are thought to be the reason for some age-related disorders to happen sooner in people who are HIV positive. I stress that this doesn't mean you will get problems, just that if you were predisposed to getting some issues in late life, you may get them a few years earlier. It's nothing for you to worry about because research in this area is ongoing so before you get to this point there is likely to be significant advances. I only mention it because it's the one thing that HIV treatment can't - at the moment - sort.

As for mental problems, can you elaborate? Do you just mean from the stress of the stigma and the burden of living with it or is it something neurological?

I mean Dementia

Same caveats as above. It's nothing for you to concern yourself with. In fact, I rather wish I'd not mentioned it as it is really just something where advances are still to be made and I didn't intend to provide additional anxiety so apologies.

[CaveyUK]

My doctor said that within the first few weeks/months I will likely lose 7% bone density because of the HIV meds.. 

Congratulations, you still have 93% bone density!

Seriously, the bone density issues with certain drugs are transient, mild (if there is bone loss at all) and cause zero problems in most people. It only becomes something to monitor in over 50's who will be routinely monitored for bone density problems and if any exist may be switched to a different regimen.

Before freaking out about bone density, it's worth remembering that other things can cause bone density loss too in general population - including dietary factors (not enough fruit/veg/dairy, too much salt), excessive Alcohol consumption, Vitamin D deficiency, Smoking, Low Testosterone, Aging, Overactive parathyroid gland, Gastric bypass, Steroid use, lack of exercise...the list goes on.

[Jim Allen]

I had expected at this stage for it to have been already.

And there is the conformation.
Not that I would personally ever set foot in St. James's Hospital again, once was enough for one lifetime.

Jim

Sorry I should clarify on that one for anyone reading this. St. James's Hospital is fine. I had a bad experience spread over 3 months with them back in 2011 not so much HIV related.

I am sure the GUM services are fine and first class and if you are seeing St. James's Hospital for HIV care please keep going.

For me I go to the Mater on Friday mornings and I have it easy compared to most.
I go down in the mornings at 8 am get a latte and newspaper, register at 8:20 (The unit opens at 8:30) get seen to by the doc before 9:30 (Spend less than 5 mins with them) and have my bloods done by the nurses before 10 am and collect my medication and I am out the door by 10:30 am this all with time in between for a 2nd coffee.

Jim

[leatherman]

My doctor said that within the first few weeks/months I will likely lose 7% bone density because of the HIV meds..

did your doctor say "likely" or "possibly"? In 24 yrs of meds, I've never had a doctor tell me I was "likely" to have any side effect because there's simple no way to predict that kind of thing.

Many people, up to 85% or more, NEVER have any bone density issues on Truvada.

for example, I've taken truvada for nearly a decade with ZERO side effects.

[Starfox]

did your doctor say "likely" or "possibly"? In 24 yrs of meds, I've never had a doctor tell me I was "likely" to have any side effect because there's simple no way to predict that kind of thing.

Many people, up to 85% or more, NEVER have any bone density issues on Truvada.

for example, I've taken truvada for nearly a decade with ZERO side effects.

Im on Stribild, I know Truvada is in it though

[zach]

Im on Stribild, I know Truvada is in it though

Truvada is the backbone of many modern meds. We understand that you're on Stribild.

In itself Truvada is a combination of two drugs; emtricitabine and tenofovir disoproxil fumarate (or now tenofovir alafenamide)

On top of the two meds I just mentioned, Stribild adds elvitegravir and cobicistat. So Stribild is actually four meds combined into one pill.

What you're not hearing, and didn't respond to in Leather's post... is your doctor's claim that you will likely lose 7% bone density... I think to a man everyone here is reacting to that with skepticism. We've all (many of us at least) taken Truvada in one form or another for years, along with the occasional bone scans, with no ill effects.

That's a bullshit claim. Either you misunderstood, or your doctor was imprecise, or just plain fear mongering. Regardless, let it go, and move on with your treatment with confidence.

If you want to be involved in the study, more power to you, that's a good thing. But don't wrap that decision up in any fear/anxiety/apprehension about that statement.

Yes, you'll still get colds and sniffles. You're a human being. Getting sick is normal and usually has nothing to do with HIV.

I told another new poster this same thing earlier today, and I'll repeat it to you. Your labwork was good news, take it that way and don't look for the bad in it.

Please Starfox, don't go down the road of fear about HIV treatment.

[Starfox]

Truvada is the backbone of many modern meds. We understand that you're on Stribild.

In itself Truvada is a combination of two drugs; emtricitabine and tenofovir disoproxil fumarate (or now tenofovir alafenamide)

On top of the two meds I just mentioned, Stribild adds elvitegravir and cobicistat. So Stribild is actually four meds combined into one pill.

What you're not hearing, and didn't respond to in Leather's post... is your doctor's claim that you will likely lose 7% bone density... I think to a man everyone here is reacting to that with skepticism. We've all (many of us at least) taken Truvada in one form or another for years, along with the occasional bone scans, with no ill effects.

That's a bullshit claim. Either you misunderstood, or your doctor was imprecise, or just plain fear mongering. Regardless, let it go, and move on with your treatment with confidence.

If you want to be involved in the study, more power to you, that's a good thing. But don't wrap that decision up in any fear/anxiety/apprehension about that statement.

Yes, you'll still get colds and sniffles. You're a human being. Getting sick is normal and usually has nothing to do with HIV.

I told another new poster this same thing earlier today, and I'll repeat it to you. Your labwork was good news, take it that way and don't look for the bad in it.

Please Starfox, don't go down the road of fear about HIV treatment.

Zach, I think you are the one that needs to chill a bit here. I am not freaking out nor I am over worrying about all of this I am simply educating myself and I can only do that by asking all these questions and thats why I am here

I suggested already in my previous posts that my doctor who is one of the people spear heading this trial could just be telling me this about the bone density so i will sign myself up to it.

What I have learned already is that the meds have little side effects if any and that I can live a normal healthy life. Thats all I need to know. So thank you for your info.

[zach]

fair enough, that works too

[leatherman]

I think you are the one that needs to chill a bit here.

the problem here is that we get a lot of denialists (whether it's the cause of HIV or misinformation about the meds), a lot of fearful people, and quite frankly a lot of under-educated people - all who come here and spout off some crazy nonsense. Because this site has always been evidence-based, we're often quick to react, and sometime with overkill, to pounce on anything that is incorrect/false information.

it is most certainly incorrect to say that someone "will likely lose" 7% bone density because of the HIV meds. That is simply factually untrue. While bone density is certainly a problem with Truvada TDF (and a much much less problem with the reformulated version of Truvada TAF), a patient is statistically "much more likely" to have NO side effects at all from either version of Truvada.

Zach's concern, while you yourself might not be concerned, was about the openness of these forums. All sorts of people just read that a doctor stated that it's likely for a patient to have a 7% bone density loss when starting meds - and that is not only scary; but it's NOT true. That's why I asked you to re-examine the language your doctor used, because there is a huge difference between "likely" and "possibly". In the minds of those newly diagnosed, especially with little HIV knowledge, that difference can sometimes be what stops them from accepting, or delaying, proper medical treatment.

To be honest, this advice/logic applies to ALL side effects. No doctor can predict the likelihood of any side effect beyond the usual 3-7% of possibility as defined by the studies on the med presented in the package insert.

[Starfox]

the problem here is that we get a lot of denialists (whether it's the cause of HIV or misinformation about the meds), a lot of fearful people, and quite frankly a lot of under-educated people - all who come here and spout off some crazy nonsense. Because this site has always been evidence-based, we're often quick to react, and sometime with overkill, to pounce on anything that is incorrect/false information.

it is most certainly incorrect to say that someone "will likely lose" 7% bone density because of the HIV meds. That is simply factually untrue. While bone density is certainly a problem with Truvada TDF (and a much much less problem with the reformulated version of Truvada TAF), a patient is statistically "much more likely" to have NO side effects at all from either version of Truvada.

Zach's concern, while you yourself might not be concerned, was about the openness of these forums. All sorts of people just read that a doctor stated that it's likely for a patient to have a 7% bone density loss when starting meds - and that is not only scary; but it's NOT true. That's why I asked you to re-examine the language your doctor used, because there is a huge difference between "likely" and "possibly". In the minds of those newly diagnosed, especially with little HIV knowledge, that difference can sometimes be what stops them from accepting, or delaying, proper medical treatment.

To be honest, this advice/logic applies to ALL side effects. No doctor can predict the likelihood of any side effect beyond the usual 3-7% of possibility as defined by the studies on the med presented in the package insert.

I get you and i hear you thanks. So with all that in mind, given the fact that its unlikely my bone density would be affected, in your personal opinion would i be best to avoid a new medication, a trial medication?

[leatherman]

in your personal opinion would i be best to avoid a new medication, a trial medication?

what is the new medication? If this is Truvada TAF then, of course! Why risk the chance of the problems Truvada TDF.

I would check into what this trial is all about, what the med is (is it an HIV med? if not why take a med for something that may not be a problem), and what side effects this drug might have.