Woosp - declining CD4, meds may not be far. Advises needed.

[komnaes]

Just got my latest result - CD4 has dropped to 257 and still a rather high VL of 75000 (see my signature line). My doctor has ordered immediately another blood test on Thursday, and should know by mid-Oct if it will bounce back. Not very optimistic all round so it seems like meds may not be far off.

Knowing my doctor will start deciding what to prescribe, what should I know at this stage other than familiar myself with all the options and their side effects?

A little bit scared though not too concern with having to start meds. Still, was hoping that it would take more than a year to get there. 

Thanks, Shaun

[fearless]

hey Shaun,

you should also consider dosing regimes ie once a day v twice a day or the various combinations and whether you need to take them with food etc.

i wake the same time each and every day so morning dosing was an easy choice. my evenings are nowhere near as regular arriving home at different times, eating, drinking, not eating etc all can vary.
the rare occassions when I do miss a dose are 99% of the time in the evening when i've gone somewhere after work on the spur of the moment and forgotten to take my pills when I arrive home.

I understand the anxiety you may feel, but once you start it will fade away pretty quickly.

Steve

[joemutt]

Awwww Shaun, I ll let others chime in re: drugs
I m on generic viramune (nevirapine) generic epivir (lamivudine) and
viread (tenofovir) I take all in one time without food (though I think maybe food is advised)
never a problem,
but maybe there are better 'starter kits' availabe now.
As Steve said; a once a day without food wd
fit an 'active lifestyle'. Set your alarm in the beginning.
You will be okay.{{hug}}

[water duck]

Dear Shaun,

I was in the same situations, awhile ago.

There was an attempted robbery at my place in april, i was attacked. subsequently I spent the next week going to the hospital on a daily basis for check-up. The stress just pile up ............
I went in for my quarterly follow-up in May, i was told that my CD4 is down to 299. She suggested that i do another draw a month later. I told myself , i cannot change the situation , therefore i must change my mentality. I must stop this stressfulness taking over my life. It is now back to 'normal' , i am momentarily out of the 'red zone'

Lately , you been through alot, try to find time to love yourself, be happy , enjoy life . And try to stop thinking about HIV. So relax and laugh , find someone you can really let go and let it all out; you see things will improve !!

WHAT WILL BE , WILL BE, let it come, don't rush it, you are not the only one who hates the idea of being on MEDs.

Good luck.

[aztecan]

Hey Shaun,

Rather than thinking of starting meds as the beginning of the end, or of some downward spiral and how much it might affect your lifestyle, I think you should look at the other side of that coin.

Think about how meds will enable you to continue living a viable, active life while taking some of the pressure and stress off of your immune system, which, up until now, has been working overtime just to keep the peace in your body.

As Steve said, consider your lifestyle, how your daily routine operates and speak with your doctor about what may be the best regimen for you.

Personally, I would opt for a once-a-day regimen to start. It would be so easy.Take your pills in the morning, then go on with your life.

But, look at all options and decide what is best for you.

Oh, and don't let the worry warts make you fret about side effects. They may or may not happen. Don't worry about them until they do.

My motto has always been, plan for the worst, hope for the best, just don't let either keep you from moving on with your life.

HUGS,

Mark

[Robert]

 hi shaun.

I agree with little steve...Mornings are a good time to take your pills.  Of course it depends on your reaction. Many people experience extreme fatigue/listlessness/ennui which could affect your job performance.  For others it's not so extreme.  I find it's this fatigue that leads to depression.  Strenuous exercise is the best answer (along with a good dose of an anti-depressant) so put aside some time during the day for this.  

As for regimes.  I like mine.  It's relatively easy on the body and soul:  reyataz, norvir, truvada.  

Good luck.  It's not easy.  Too bad you have to start so soon but you're right.  Your numbers aren't so hot and the trend is not good.  Three times in a row below 20% is not good news.

robert

[jennynyc7]

I love my combo, it is Viramune (2 pills at once) and one Truvada. I take it at about 9:30 pm every night without regards to food. The first couple of weeks it made me a little loopy and I felt I needed to go lay down about an hour after taking it but that has gone away. I know everyone reacts differently but I have had no side effects whatsoever. I do hope your #'s go up though. Good luck!

[David_CA]

Hi Shaun,

I started meds about 9 months after diagnosis with numbers somewhat comparable to yours (my viral load and CD4's were  both a bit higher).  I ended up in the hospital with PCP with those numbers, too.  In my mind, I kind of wanted to start meds.  I didn't want them as meds, but for what the would do for me - help keep me healthy.  I guess being apprehensive is normal, but I didn't really experience that emotion.  Four liters of oxygen / minute (in the hospital) pretty much makes everything seem ok!   

I read somewhere that some people are helped by 'practicing' taking meds before they have to start.  They took their vitamins or something at a regimented time for a while to become accustomed to the routine.  At any rate, you know that there are any number of us here on just about every combo of ARV's that you'll get all the feedback, experiences, etc you'll ever want.  Take care and try not to stress over the numbers; they'll improve once you do start meds.

David

[Eyesing]

Hey Shaun, I don't really have anything intelligent to add about medications, but just wanted to wish you the best whatever happens!  You seem like a real nice guy, and I think you should just try to stay positive and think about how lucky we all are that there ARE these medications to take now... things could be much much worse.

By the way I know how you feel... I tested pos just a few weeks ago and my VL is already over 100,000, and I know I was just infected in early 2008 (based on my last neg test).  I cried for a minute when I found out my numbers... and sure I hope they come down when I go for my second test next week... but in the end, I'm just glad that I know there is a big poster full of medications on my doctor's wall that can keep us going for many many years yet.

[dixieman]

Well I just want to say... you already have the virus... so when I became poz... way back when there were no options other than AZT... which I did not want to take but, I tried everything before I became a guinea pig... who knows how many toxic drugs I took and placebos? the trials that I was involved in some of the meds were 20 to thirty pills... until I was put on the merc study... I probally would not be here today... the drug worked wonders (crixivan) gave me my lhealth and life back.... was it fun? NO... but, you do what you have to do... You have soooo many options now... so do not look as if meds are the worst scenerio there is... I know of many people who would have given their right arm for the chance to just be able to prolong their life... who are not with us today!

[mecch]

Komnaes

combis and side effects:  experience of recently infected and going on meds:

I went on meds within three months of seroconversion. Sustiva + Truvada before I go to bed.  This is same treatment as Atripla.  Sustiva is advised on empty stomach to prevent CNS problems - bad dreams or other side effects. My ID first advised a small snack. After two weeks and NO side effects, he said I can therefore take it no matter what is in, or is not in, my stomach.

My doc assured me before I went on meds that side effects would be minimum.  Well he was right.  In fact there are newer combis where the side effects match placebo!  (Unfortunately, not first line treatment in my country -- ask in yours!)

Timing:  if your combi includes sustiva - my ID advised night dosing. I concur after one experience taking in day and feeling trippy.

Someone on this forum said that if you believe in the treatement, better chance it works, and garanteed to be more supportable.  He is SO RIGHT.  Moral: believe in treatment generally, but adjust your specific treatment if its not optimal?

Anyway, no matter your individual reaction -- you still get the pretty much universal benefits! 

1)  The meds will radically reduce the virus -- as you know the prognosis for a pretty much normal life for people in your shoes is quite good. Also any icky feeling today attributed to virus will be resolved.

2) You'll probably go to undetectable -- and that will give you more peace of mind in your sex life -- as well as your partner's (or partners' wink wink) peace of mind. 

2a)  (In my country being undetectable changes A LOT - legally and ethically.)

3)  1+2 can relieve a lot of stress, some of which you may not be aware of. Reduced stress = health benefits.   (6 weeks into my treatment I feel more and more my normal self, virally enhanced with now a different life course, but i just feel in control. Control feels pretty good.)

Good luck

[blondbeauty]

The sooner you start meds the sooner your immune system will be able to relax and start to recover to fight other infections instead of being exhausted by HIV.

[aliveinla]

People all made very sound advices. Good luck Shaun. But just in case you are not totally ready to take meds, I agree to Water Duck, try to relax and get another test? I myself had a really low CD4 count once (you knew that) and I went into panic, but it came back up later. I am due for another blood test very soon, so I am a little scared myself, I know I am not ready to take meds yet.

Edit to add: i think us Asians have lower CD4 count to begin with...

[komnaes]

Thanks guys for all the advises..

I guess I was a bit spooked by my last visit - my doctor suddenly seemed very concern and kept telling me that my body was an open field for all sort of IOs now that my CD4 has dropped. He also said that it was a definitive declining trend. Also recovering from a flu and still coughing a bit lately, I also began to sweat at night again like when I was first diagnosed. For like two months at the time I kept waking up at night in cold sweat and feeling my body heating up.. that's one aspect of my illness that really spooks me, the sweat.

The more I think about the more it seems meds are inevitable (of course they are, just didn't think it would be so soon). But then I wasn't doing much to reduce my stress at work and family.. the one saving grace is that I trust this doctor - Dr. Li is the leading doctor in the field (not just in Hong Kong, but also in Asia and very reputable internationally) and I have known him now for many years.

The clinic will take my blood tomorrow and in 2 weeks I should have another full report. The initial thinking is that if it drops below 200 (yes, a first AIDS diagnosis) they will immediately put me on meds.. if it keeps at around the same level or even goes up (which doesn't seem very likely, all signs considered) they will give it one more test.

.. will see how it goes.. thanks again for your kindness and advises.. I will keep them in mind when I talk to my doc next.

Hugs, Shaun

[auspoz]

Good luck Komnaes.

Do keep us posted with how you go. Whatever the resolution, it sounds like you are being taken care of.

Best

Auspoz

[Assurbanipal]

Hi

I just wanted to wish you well.  From your posts I really think you've got it pretty straight in your head already -- I'd just suggest that you:
1) Try for a combo whose potential side effects don't play to your existing weak spots (e.g. if you have a tendency toward high cholesterol, maybe not use Kaletra in the first combo)
2) But remember that side effects don't even hit lots / most
3) Most of the comboo dosing requirements are pretty simple -- even with your busy schedule you can probably manage most-- but simpler is better
4) Don't obsess too much over getting the perfect first combo -- the important thing is to start early enough to avoid a serious OI.  After all, if the first combo is hard to take, you can change it and the side effects of a modern combo will usually vanish over time; but a serious OI can leave permanent damage.

Hoping you do well
A

[mecch]

 I also began to sweat at night again like when I was first diagnosed. For like two months at the time I kept waking up at night in cold sweat and feeling my body heating up.. that's one aspect of my illness that really spooks me, the sweat.
...
The initial thinking is that if it drops below 200 (yes, a first AIDS diagnosis) they will immediately put me on meds..

Sweats are spooky as is fatique when otherwise you have no complaints.  (Treatment nipped that immediately in my case - viral loads plummet fast.)

I dont know for your country, but in most countries an "AIDS diagnosis" requires certain opportunistic infections, combined with certain numbers.  In your case, if you lived in my country, and your numbers dropped but you had NO infections you wouldnt be "diagnosed" with AIDS.  

Maybe thats the way they do things in your country for some reason.  

Also - in many countries treatment is seriously considered when CD4 drops below 350, as part of overall decline.

Your doctor knows whats best for you and whats acceptable in your country. If it is not going to freak you out, you can look at the USA protocal -- on the following link, in the PDF, page 12.  Treatment considered less than 350 - in relation to other factors.

http://aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=7&ClassID=1

Hmm, its normal to be hesitant about meds. Its normal to disappointed if you thought you personally would have years before meds.  

However were I in your shoes I'd be asking different questions, asking why my doctors weren't treating me already...   In my country, they want to AVOID infections and low numbers, and AID diagnosis, and maintain health before this happens.

[komnaes]

We have had some discussions about guidelines. Not sure if they have changed it in the UK but in my country (i.e. well, Hong Kong is not exactly one) it's still 250. I go with the theory that it's ok to not rush to taking meds if it's above 250 unless my doctor tells me otherwise after considering other signs/vitals, and to some extent it also depends on how the patient, that's me, feels if it hasn't dropped constantly down the 250 mark. But then we do spot a declining trend so it seems there's no reason to expect my CD4 to bounce back significantly.

All the friends I have met through support groups here that have to start meds very soon after diagnosis are doing well. So in a way it's assuring, though I know how they react to the meds has nothing to do with how I will do. Just hope for the best, and prepared for the worst, as my ever-wise friend Mark has said.

[Robert]

Shaun...

you're certainly right about this:

We have had some discussions about guidelines. Not sure if they have changed it in the UK but in my country (i.e. well, Hong Kong is not exactly one...)

The day I know just exactly what Hong Kong really is, is the day I can tell the difference between 'nukes' and 'non-nukes'.

robert

[water duck]

aliveinla

Edit to add: i think us Asians have lower CD4 count to begin with...

i do not  think science support that, a body is a body. my first count was in the 900+
quarterly , as i went in , i lost about 50 to 100 , i was in denial !! when i accepted 
my status , it became constant.

I also began to sweat at night again like when I was first diagnosed

guess you should not worry about that, it is stressed related. you must not forgot we sweat about 3 l a night, i was quite shocked when told that.
Shuan, you talk about numbers of cd4, when i looked at your % , you are quite constant.
numbers go up and down, look , don't get worked up , wait and see , meanwhile, i guess you just need to relax.

Good luck.

[komnaes]

Some new friends I have met who also got diagnosed around the same time had very low CD4 to start with and all went on meds within 6 months. So in a way I feel lucky already. At the end I know this virus is all mind and mind alone.. what a bugger...

I think it's like 5.58am in the morning by which I know I am two minutes from having to get up and face the toughest examination of my life. Yes, I have read all about the meds before and what'd I be preparing for, still it's causing some anxiety (can I deal with the side-effects, etc)...

Thanks Water Duck on the tip on night sweating.. it's just me anyway but definitely I feel something not very right with my body. It's a vicious circle I know so I am doing a bit more exercises now and make sure I do some yoga positions before going to bed.. but like this morning it felt very spooky to wake up with a cold layer of sweat covering my body.

Hugs, you guys are wonderful! Shaun

[water duck]

it's just me anyway but definitely I feel something not very right with my body

NO , it is not just you, we all need to go through this stage, still could remembered my two sleepless nights before my appointment, you heard the expression : break out in cold sweat ??
I am sure many here can share similiar experiences.

If you have so much nervous energies piled up, why not run afew rounds in the park , take a warm shower and go to bed ??  SOON, dear Shuan, you going to come back and announce the good news that Dr Li is not recommending  meds for the moment 

Never mind about what happened to your friends, and yes , this virus is yours and yours alone to due with. Over-information can kills, if all these informations cause you distress, maybe , you should keep away from these for the moment.

Meanwhile, put on your seat belt, sit back , this ride with this virus is going to be a long one, might as well get comfortable 

[Iggy]

Shaun,

You already gotten most of the advice and thoughts that I would have provided, so I will just echo:

Starting meds (and this is from one who just started in June/July) is more worrisome psychologically prior to that first pill then it is within a matter of weeks afterwards.

You may or you may not have side effects.  I did about week 4-5 (I think...I already forgot) for about 1-2 weeks that mainly revolved around digestion issues.  They have since passed and outside of actually taking my meds, I don't think much about them at all.

Good luck.

[aliveinla]

Shaun, tomorrow try to get your blood drawn as late as you can, also don't stress too much over it. I heard CD4 goes up the later of the day, so I always go around noon, because I have to fast, I go when I am starved. Good luck.

One silver lining you have: I think meds, even health care, in Hong Kong is almost free. Now I am really worried I might lose my job thus losing my insurance now that the economy is so bad.

[komnaes]

Thanks guys,

Hey Alive, just came back from the Clinic. No choice though as the appointment was in the morning. Oh well, I guess it depends on how low it drops, if it's indeed dropping. I may ask for another test before starting meds if it remains stable or between the 200-250 mark.

Yes, no complaint about the health care here. They're doing a great job for out-patient clinical care, but the public hospitals are horrible if we need to, er, check in for some real problems. I have additional health insurance that should have given me an option to use better private hospitals, but now it's more or less gone as even if I have a problem that is not related to HIV, I still want the specialist care which means I have to check in the government hospital where the HIV Clinic is located.

BTW when I was there this morning the lobby was packed with crying babies and their parents - lots of Hong Kong parents with kids in China are taking them here to check kidney stone during the Golden Week. China has directly or indirectly overwhelming the health care system here. A friend of mind, who has a 1 1/2 baby girl in Shenzhen, was calling me and everyone she knows in panic as she couldn't find any milk powder.. sad..

Hugs, Shaun