low cd4 but also low viral load: start meds now?

[lost_boy]

Hi there, just like to say this website has been really helpful... reading all the topics makes me realise I'm not completely alone.  Felt like I got hit with a sledgehammer when I got the news... I mean, I don't feel bad, I still have all my fingers and toes... but the fact I may have wiped years off my life... I think I may still be in shock. 

Anyway: I was recently diagnosed a few weeks ago: my first cd4 count was 312, viral load 1500, which I gather is reasonably low. My second cd4 count as of last week was 347. I'm meeting my doctor to discuss starting medication as my cd4 count is less than 350. But what I don't understand is, how can my viral count be so low too? I thought it tended to be cd4 low/high viral load, and vice versa. Surely my viral load should be higher, or does this indicate I have been carrying HIV for quite some time? I ask as I am a bit upset that I will have to start medication so soon after initial diagnosis, as I thought perhaps I'd have a few years before starting treatment (obviously would rather start treatment if it's recommended!).

Should I hold off another month - has my cd4 count just "dipped" following infection..? Any thoughts appreciated!

[skeebo1969]

   Lost_boy,

   First I would like to say sorry to hear of your recent diagnosis.  I know it must be difficult dealing with both the initial news and having to start taking medicine so soon.  One of the reasons for the new guidelines is that studies have found that people can tolerate and/or have less side effects than those who start with lower Cd4's.  So that's a plus for you...

   Another plus for you is that the newer regimens are tolerated by a lot of people.

   Also...  your immune system can have an opportunity to rebound without being severely compromised, probably the biggest plus of all.....

   But you know what sucks man... is that none of this will help you get over the fears until you start.  Something else that sucks is  your numbers would definitely, under today's guidelines, dictate you starting meds.

   Ultimately the decision is yours.  In any event you should start mentally preparing yourself for what will be inevitable anyways.  In the mean time, keep reading and educating yourself.  The information you will find in the forums should help lessen some your anxiety and remember if you have any questions don't hesitate to ask.

    Welcome to the forums..   

   

[tommy246]

I think you should start now the dhhs have raised the guidelines this week from 350 cd4 to 500 cd4, as modern meds improve and become very tolerable  and evidence grows of damage caused by untreated hiv.

[lost_boy]

Thanks for the support... I have to say I am utterly freaked out and scared.  I feel like I'm broken - who is going to want me know? I'm afraid of the stigma. A lot of my dreams have been shattered - I can't just go and live and work abroad.  I just wish I knew "when" it happened.  It's so bloody unfair.  I feel like I've done everything right... I don't smoke or take drugs, I exercise, and I practiced safe sex 99% of the time.  A few times with my ex-bf we didn't, and now everythings been shafted.  It's really just made me think about my own mortality. I hate it.

I don't feel too scared about starting meds, because then I feel like I will be taking action.  But the sooner I start, doesn't that mean the disease can begin building a resistance sooner too?  How often will I have to change meds?  Is it possible that I could be on just one particular pill for the rest of my life?  

I am less worried about side effects... my brother has been on strong anti-psychotic drugs for many years, and they have truly horrible side effects.  I gather that the side effects of anti-HIV drugs are mostly confined to initial few weeks as your body adjusts. Is that right?

I also feel I'll be able to stick to taking them daily, I'm not irresponsible, or forgetful.  But do they have to be taken like clockwork, say at 8am when you get up?  What if I sleep in on a weekend, and wake up at lunchtime?  It's not going to mess things up too much, is it?

[Assurbanipal]

Welcome to the forums lostboy

If you are willing to commit to taking the drugs on a reasonable schedule, don't worry about drug resistance building up.  It does happen occasionally, but usually because someone is not adherent to their med schedule.  Occasionally if you start with a really high viral load it takes a couple of tries, but not usually.

And many people stay on a regimen for years, switching to reduce side effects or improve convenience as better drugs come out or we find out more about a particular drug. 

With the most modern drugs, really harsh side effects are generally short term and often rare.  There can be longer term side effects that build up gradually that you will need to monitor, but for a lot of people taking their meds is no more complicated than a daily multivitamin.  You just have to make sure you take it every day without fail. 

The point of sticking to a dosing time is to try to make sure you always have certain minimal levels of the drug in your blood -- how important it is to stick to the timing varies depends on how fast your body clears the drug and how much HIV you have floating around in your blood -- generally once you have undetectable levels of the virus in your blood, there is less need to worry about a strict timetable.

Sounds like you will be fine over time.
A

[ruralguy]

Welcome lostboy.  The feelings you express are very familiar to me.  I found out in the course of a physical.  I tested 18 months prior but was never sick.  I can't pin my infection on any incident.  But, I've come to understand that doesn't matter anyway.  Its gets better, really.  I found out in June and then had the usual tests in July with results very similar to yours:  low vr load and 300-350 cd4.

I decided on meds on the theory that suppressing the virus as soon as possible was preferable to just getting sicker.  I started meds in mid September and, probably because I started with a low viral ct like yours, I went undetectable very shortly.  My energy came back and life has largely returned to normal.  There are a few meds to choose from.  I'm on Atripla taken once a day when I get up (a bit unusual).  At this point I really don't notice anything so long as I take if 30+ minutes before eating breakfast.

I'm not trying to tell you to start or not, or which meds to choose.  I just wanted to share that I went thru a devastating emotional period after my diagnosis in June and now, in December, things have turned around.  I feel fine and i certainly don't think "hiv" every moment like I first did.  You'll be alright.  The drugs are not that bad and real progress in being made on new fronts. 

Stay in touch on these boards.  You will get help and support of all sorts when you need it.  Just ask.  Keep us posted on how your are doing.  Dave

[lost_boy]

Thanks for being so reassuring.  I've been reading a lot of the stories on the forums, and I feel a lot less scared. I'm still wandering around with "HIV, HIV" going through my head...

I think I'm fortunate in that I've always been a reasonably cheerful person, and do have caring friends and a stable life.  I think I'm in the best place I could be really to deal with this.  I'm just telling myself that it's not the end of the world, I'm still "me".  I feel terrible for those in more traumatic circumstances. 

I'm meeting the doctor on Thursday, and I expect he will try to encourage me to begin medication. I think given the fact (as tommy246 said, and I have read elsewhere) that they recommend starting treatment sooner with cd4 between 350-500, I should get started.  I want to feel like I'm doing something... I suspect the doctor will be expecting a hard sell, maybe I'll surprise him and say I want to start immediately!  I should be ok if I start meds in January rather than the Christmas period, right? 

Thanks skeebo and Assurbanipal, I appreciate it.  Also ruralguy, I'm glad you shared your story, I'm very, very reassured that you had similar figures!  I also checked your old posts, that stuff from Joel Gallant's book is also encouraging.  I especially found this bit interesting:
"    * If it didn't come with so much emotional, social, and historical baggage, people would react to the diagnosis the way they might if they learned they had diabetes or arthritis.....treatment for HIV is now easier and more effective than treatment for either of those diseases."
That's very true, food for thought. My doctor said something similiar after I was diagnosed.  Treatment for HIV being better than for diabetes, etc.  I think I'm beginning to believe her!  Still, I know there will be ups and downs ahead.  Look forward to talking with you all.

[bmancanfly]

Sorry to hear about your diagnosis.

With a viral load of only 1500 there is not any urgency for you to make a decision unless you are ready to.  The consensus now is to start earlier, rather than later, but with such a low viral load you have some time to come to terms with your diagnosis before making a decision.

I'd wait a month or two (after your last blood draw) get a third set of labs and make a decision with more info. 

[Assurbanipal]

When you talk with the doctor even if you are ready to start, there is not a huge rush.  And before you start, make sure you get a test to see if you have resistance to any of the current drugs.

Good luck, you will be fine
A

[lost_boy]

I'm going to see the doctor tomorrow, so will let you know how it goes. Right now I'm thinking I'll probably start meds in Jan or Feb, after Christmas hols when I won't have much of a routine.

Told a friend about my diagnosis, someone I trust loads and tell everything to.  He was supportive, though he admitted he had no idea really about HIV! But he made me laugh even though I was crying, so that's good.  I'll have someone to speak to if I'm feeling blue.  That'll do for now, I'll see later if I feel the need to let anybody else know in particular.

I also spoke to my ex-boyfriend on the phone.  We went out for six months, Dec 08 - May 09. Had to let him know... such a relief, he has had a recent test and is all clear.  That's a weight off my shoulders.  But that probably means I caught HIV in the last half a year... not so long.  I don't want to think I had it while I was with my bf, but I suspect he'd have caught it as we had unprotected sex. But there was no reason to think I had it at that point.  I was actually supposed to meet him on the evening I was diagnosed, talk about getting back together... but that day I kind of wasn't in the mood!  But hope will meet up after xmas hols.

When I phoned, he was really good & understanding. Turns out his housemate is HIV+ (didn't know that!) and also works for an HIV charity. So spoke to him on the phone, and it was really useful.  First time I could speak about it without crying, actually! He mentioned not to rush into starting treatment, and maybe spend a few months just getting my head round it.  He was saying that he's had (several) long term-ish relationships in the years since he was diagnosed, and he found it easier just to be upfront from the first date.  He also told me not to spook myself with things on the net.  So guys: don't spook me!!  

[Nashvegas]

If I were you, I think I'd wait before starting meds.  After all, your second labs showed a CD4 count that was higher than your initial labs, and who's to say that your next labs won't show an even higher number.  Maybe even above 500 (unlikely, but possible).  It sounds like you probably have been diagnosed shortly after infection, so it's entirely possible that your t-cells took a big hit and are rebounding on their own.  That being said, I might get another blood draw in a month or six weeks, rather than waiting for the full three months. 

Keep us posted.  ;-)

[lost_boy]

Haha, Nashvegas, that's funny because that's exactly what I am doing Will be having a third blood test in middle of January.  Will see if CD4 continues to show upward trend, or not.  My doctor suggests that if it still less than 375, it may be an idea to start treatment.  He also said it's likely I'd be on two pills a day, to see how I take to the medication, before moving onto the one pill that combines them.  He also noted that I don't appear to have any immediate resistances.  So it's all fairly positive, really, as these things go. As I have said before, I'm a lot less scared now the initial shock has passed.  Went out for drinks last night, ended up at a karaoke bar, that was carnage.  Have a taekwondo competition on Sunday. Otherwise gonna have a chilled weekend. Hope you're all good!