POZ Community Forums
Main Forums => Living With HIV => Topic started by: northernguy on October 08, 2009, 12:19:01 am
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Latest labs still showing OK results, though the cd4% of 16 ain't great. CD4 580 vl 45k.
My doc is in no rush to put me on meds, but I'm still plagued with skin issues, which have worsened over the last month. From what I understand there is really no "cure" for the seborrheic dermatitis I've got, so the only real shot at resolving it is HAART (and that's no guarantee).
I'm interested in other folks opinions: would you push for meds now or hold out until the numbers worsen?
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Look at the numbers remembering that there is a lot of random noise. Changes are only significant if:
viral load varies 3 fold
CD4 count varies more than 30% (multiplicative)
CD4 % varies more than 3% (additive)
That said, it looks like your viral load took a significant step up in 2008 and your tcell count and percentage took a significant step down in your recent tests.
Are you mentally ready to stick with it if you start? If so, I'd give it a try. Course, I'm biased having seen how bad it gets if you don't start til you are sick.
But it certainly doesn't look urgent.
It's a difficult decision.
Best wishes
A
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If those results were mine, I would start meds. HOWEVER, the decision for you to to start is not mine, nor is it, ultimately, the docs, it is yours. Certainly you should consult with and consider his/her advice, but the decision is yours.
Are you ready to start? If so, have a discussion with the doctor, but don't frame it as "should I", frame it in the way you wish to move.
As for your seborrheic dermatitis, I had terrible case of it. It did improve, somewhat, when I start HAART, but I did not get it under control until I saw a dermatologist and he gave me a prescription for Desowen creme. I used it 2x a day for a couple of weeks and now I use it 2x a WEEK and my face is completely clear.
Good luck,
Mike
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Hey Northernguy -- I think if I were in your shoes, I'd be pushing to start.
It seems to me that the 350-500 CD4 threshold for starting is really aimed at people who are not experiencing other problems due to their HIV. You've certainly experienced more than your share of significant skin issues for someone with a relatively high CD4 count. That would certainly weigh on my psyche and overall mental state, which, in turn, and also might be contributing to the weight gain you've experienced.
I say, if you're ready, grab the bull by the horns and figure out which combo you'd like to start with. But it's up to you...
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I had a lot of skin and mouth issues (thrush/leukoplakia)before I started meds. My lowest % was 14.5, remember anything under 14% is an AIDS diagnoses. Within 2 months of starting meds my problems cleared up and have had no problems since.
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If I were you, I'd take HAART. Skin issues point to continued immune overdrive and inflammation.
Is EVERYTHING else A OK, or are there other "issues" as well?
Can you afford HAART for the long run, and stick to it?
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Thanks for the input. Keep it coming.
I'm torn. On the one hand the VL is climbing, but on the other cd4's are where they were three years ago. The supposedly stable cd4% seems to bounce around a fair amount in my case.
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Hi Northernguy / All, hope you don't mind a newbie posting here, but this is the million dollar topic for me now too. I 'm just a few months into post+ life, but starting to wrestle with this issue too. I've been having all sorts of skin problems as well, mostly rashes that come and go (good success with topicort and some other skin creams from the derm). My doc has been telling me that more and more the treatment wisdom is to start meds earlier rather than later - before CD4 reaches 350 if possible (rather than 250 as is current recommendation) - but your numbers look quite good (and have for years!). He does say better chance for skin problems to improve when on meds (after getting stabilized), but makes no promises (could be allergies, etc). Great information on this thread, thanks for starting it...and I wish you good luck with your decision. esper
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I think your body is telling you what it needs... Listen to it.. At 14%, I would get started. My skin problems reversed themselves in a months time and no more of that crap. Its a committment and you have been dancing around this for awhile. I had 5 weeks from diagnosis to getting started. You have alot of head knowledge now... Then, what is your doctor saying or recomending??
Hugs,
Eric
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Northernguy, to mirror what Mecch said my doctor told me and my partner this week "remember...HIV is a HIGHLY HIGHLY inflammatory condition". He said the inflammation, left untreated, could lead to other more significant issues down the road.
He also said the CDC will be changing the treatment guidelines in the very near future (Nov. maybe) to say CD4 counts between 350 and 500 would change from "consider treatment" to "strongly consider or strongly suggest treatment". The pendulum, as many have told me, is swinging toward treating earlier. This is obviously mostly due to the availability of effective drugs with manageable side effects. Given the new guidelines you may want to think again about possibly starting even though you are still now in the "consider" range.
BTW, the other half took his second dose of Atripla last night and has had 0 side effects thus far. He woke up today and said in a joking way "I was ripped off...no wild dreams....no nothing!". He is now very happy he started treatment "early" and has no regrets.
Best,
Steve
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I think your body is telling you what it needs... Listen to it.. At 14%, I would get started. My skin problems reversed themselves in a months time and no more of that crap. Its a committment and you have been dancing around this for awhile. I had 5 weeks from diagnosis to getting started. You have alot of head knowledge now... Then, what is your doctor saying or recomending??
Hugs,
Eric
My docs a strong believer in cd4 count as the call to start, taking into account the viral load. He's also wary of the fact there still aren't really long-term studies of the effects of currently used meds on the body.
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CD4 count is generally fine for starting treatment, but a CD% of aroun 12-13% should equate a count of 200, and a cd4% around your level equate to about the count treatment is recommended in current guidelines. This said, CD4 count is more predictive of risk of opportunistic infections, it seems. All this said, I reckon, makes it your (difficult) call
With CD4 counts and treatment there's nothin to believe in, it's what the studies says, and what you make of it.
- matt
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It is definitely an individual decision, but as I have posted before, I started with CD4 of 511 and Vl of 47,500 on Atripla and I have absolutely no regrets. 100% adherent BTW.
I had side effects for only the first week. After that it has been a breeze.
My feeling was, why wait? I would have to start in another year or two, and as others have said the imflamation created by the virus is becoming more of a concern.
Plus I feel I am in control now. I'm not sitting waiting.
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while your CD4 count is in the good range I would go ahead and push to start HAART. I reason is why let the VL be that high? Get you VL down to under 50 copies and your CD4/CD8 % will get better. There is no reason to wait for all hell to break loose before starting meds.
good luck
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I'm in a similar situation. Labs are similar with a bit lower vl. I don't have the skin probs but other issues such as apthous ulcers (often too many to count) and fatigue. My md mentioned therapy as well as an option without any guarantee it will help the above (of course.)
For whatever it's worth, it is a tough decision for me also. At this time, I am choosing to not start meds. That is not to say I have any confidence that my decision is right or wrong. It's just my decision at this time. If clinical protocols change as one of our fellow members indicated, my decision will be much easier.
I know I probably wasn't much help but maybe knowing others are at a very similar place is helpful...hope it is.
AR
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There is a growing number of studies that say the higher the CD4 the less chance of you developing infections and cancers. I wasn't even diagnosed until 138. . My wife wasn't diagnosed till < 20 with a viral load of 500,000. Trust me, You never want to get close to being there. The meds arn't as bad as fighting to live. A lot of plans will not pay for meds till you get to 350 or below. When I started 2 years ago that threashold was 200 but they found out 200 was too low and too late. If you have a way to pay for meds at a CD4 above 500, I would go for it. The chances you take for opportuninistic infections are too high otherwise. I've been through the cancer bit. My wife has been through the pneumonia and other infections. It also harder to get your immunity back once it has been decimated. Once your viral load starts going up, it can go up rapidly. I have seen a 100,000 jump in my wife in one month. 2 cents worth for free. Been there.
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I was asked to post this by others that read your posts. Find an HIV experienced doctor.
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i've never had a viral load over 9k but yet my cd4% have gone as low as 12%. my t-cells were around 300 - 400 at the time. it seems like each one of our bodies acts differently with the hiv so i can't understand why your doctor would only want to take your t-cell count into consideration. for me, getting thrush, a horrendous sinus infection and then a few bouts of MRSA all in 9 months time was enough for me to decide to go on meds. while it is valid to worry about long term side effects from the meds, you don't want your immune system to be so worn down that it will be harder to get healthy once you start taking them.
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I was asked to post this by others that read your posts. Find an HIV experienced doctor.
My doc is very experienced in treating HIV. Having been on the frontlines for quite a while, I think he's leery of some of the side effects of the HIV meds, especially given that we may be taking them now for decades.
I forgot to add that thankfully med cost and insurance issues aren't a factor as the universal healthcare system in British Columbia covers all of that.
Edited to add: adherence shouldn't be an issue either, I've been on blood pressure and acid reflux meds for years, with no problems.
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Hi, there are other considerations. There are alot of people at my ASO in the 50 to 70 year old range. The newest research says that starting HART earlier, around CD4 500, has the best chance for a long life. I know that this seems a long way off to most of you, but it does come around. I'm knew to the site, but I've been Poz for 16 years & wish that I started treatment Earlier than I did. Hugs, deibster
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northernguy, there are many treatment options now that minimize the side effects. I have seen with my own eyes that people react very different with different regimens. My wife is on her third and the best one yet! ;) My doctor offered to change mine today if I wanted(declined) due to a drug interaction problem ( new med I am trying to add to the pile of meds I already take) and because I am having trouble swallowing the large pill because of my throat surgery. Some times it takes a long time for your body to adjust to the meds.; sometimes not. My wife's latest less than a week, Mine almost a year, but the meds are VERY doable. Don't let the virus win or get a good grasp on you. The " control" ( no drug) group in the long term studies are dead. There is always the option of changing to a better med as they come available. It is your job to stay alive to have that opportunity. Kudos to universal healthcare!!!! U.S.A. needs to get with the program.
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Well, because of my oral hairy leukoplakia diagnosis my doc and I had a long talk about it today. He still thinks I can hold off, but asked if I felt psychologically ready to start. I think I'll go in for an early set of labs in Nov., two months after the last ones. The most commonly used first line treatment here is apparently Viramune + Truvada.
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I'm on Viramune + Truvada and love the combo. A word of warning though -- a small but significant percentage of people on this combo end up with a rash in the first couple of weeks, which often resolves, but forces some people to go off the meds. I don't know if you're more likely to experience that rash because of the skin issues you've dealt with, but it's something to be aware of. But this combo has literally been without any negative side effects for me, and I'm really glad I'm on it.
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If you have access to the meds and can adhere to the regimen - S T A R T. You will not regret it.
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Northernguy -
I'm interested in hearing more about whether you've started treatment and if it has had any effect on your skin condition. I've been dealing with what has alternately been called Eosinophilic Folliculitis or Grover's Disease for three years. In either case it is an unsightly and intensely itchy rash that covers my back, chest and shoulders. Among the myriad treatments I've had, oral prednisone is the ONLY one that has brought any relief. After looking for bacteria, parasites, fungus (five biopsies) there is still no definitive diagnosis.
As a result, my ID doctor and I decided yesterday that it was probably time to start HAART as soon as my resistance profile test comes back. I've been delaying this decision as long as I can since my liver is damaged from years of heavy drinking and an unfortunate encounter with fulminate Hep B nearly 10 years ago. Having almost a year of sobriety under my belt, though, my liver function numbers are finally rock solid and will hopefully not go too out of whack if I start treatment.
I can't find any literature that advises differently since it clearly appears that I'm dealing with inflammation and immune response issues. An additional plus of starting on Truvada is that it will mitigate any Hep B reactivation that could be caused by a longer course of prednisone. Still, I'm bummed to have to start meds with numbers that are otherwise stellar.
So - what has your experience been... any luck?
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Northernguy -
I'm interested in hearing more about whether you've started treatment and if it has had any effect on your skin condition. ...
So - what has your experience been... any luck?
I'm going to bump my labs up to every 2 months instead of 3. Next ones are in a couple or weeks, we'll see what the results are.
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Go read the johns hopkins hiv guide website its fantastic you can put your question to the respected dr gallant he will answer in three days or read the questions already asked in the starting treatment thread, it will make your decision easy. Also remember 14 % =200cd4 even though most docs use the cd4 as the main guide,my numbers are the same as yours i start atripla tonight and am happy to do so as in august i was in hospital for 3 weeks with pnuemonia with your numbers.