POZ Community Forums
Main Forums => Living With HIV => Topic started by: Iggy on June 15, 2008, 05:59:13 pm
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After a few postponements due to financial issues, tomorrow is the doctor's appointment where I expect to receive my first prescription for HIV meds (most likely Atripla as I have no known resistances according to my last genotype.)
Physically I feel fine, but since my last results in March ( http://forums.poz.com/index.php?topic=19748.0 ) were Cd4: 300; VL: 96,000; %: 13 - I don't kid myself that I have had a miraculous bounce back in numbers.
Jeromy made a good suggestion that I inquire with the doc to see if there are any current clinical trials that I may be eligible for as it would ease the cost issue with the meds and doc appointments being free for a while, so I may in fact not be starting meds tomorrow after all, but Charlotte seems not to be a high priority area in many of the listings that I looked up so I'm not certain we will luck out with that option.
Anyway, I was diagnosed in Sept of 2002 though confident my conversion was May, 2002 so I either made it six years or made it just short of six years of needing meds.
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Iggy that sounds like a good idea as long as you live close to the clinic.
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Instead of looking at the turn to meds as a "failure," I hope that you find comfort in exploring clinical trials.
Yeah, it doesn't look like much is open in the Charlotte area for meds:
http://www.clinicaltrials.gov/ct2/results?term=hiv+charlotte&recr=Open (http://www.clinicaltrials.gov/ct2/results?term=hiv+charlotte&recr=Open)
Still, it's worth nagging the study coordinators of what meds trials there are for treatment-naive folks. Researchers LOVE getting their needles into untreated pozzies and doping them up with randomized pills.
Best,
David
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You may want to expand your clinical trial search to Wake-Forest in Winston-Salem, Duke and UNC-Chapel Hill. I live in Greensboro and participated in a trial at Duke before I was insured. It wasn't too bad because I only had to go once a month for bloodwork.
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As David points out, I hope you're not viewing your need for meds as this as some kind of personal failure on your part. HIV is a tough virus. So look at meds at the next logical step, and something that has a high likelihood of being of great benefit to you.
Hugs,
Henry
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6 years ( or almost) is pretty good~ I only made it 2 1/2!
I hope you can find one of those trials, but if you can't, I hope you have as easy and successful time with Atipla as I have thus far.
All my best,
Paul
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Hi Iggy.
I'm sorry you just might have to start the meds tomorrow if only because financially it sounds like it might be a stretch. I like the idea of widening your search. I hope it works out OK.
robert
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Jeromy made a good suggestion that I inquire with the doc to see if there are any current clinical trials that I may be eligible for as it would ease the cost issue with the meds and doc appointments being free for a while, so I may in fact not be starting meds tomorrow after all, but Charlotte seems not to be a high priority area in many of the listings that I looked up so I'm not certain we will luck out with that option.
May have missed it, but not getting why you wouldn't just qualify for ADAP in the first place.
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Hey Iggy,
You are on Jeromy's insurance as his partner, right? If I read the other thread correctly, your copays will be in the neighborhood of $80 a month.
Now hon, I don't want to put too fine a point on this, but with numbers like yours, I would make getting on those meds a priority.
Everything else will be for naught if your health goes down the crapper.
Are you enrolled in an ASO in Charlotte? Do they have insurance assistance? We have a program here that will pay your copays for you, providing you can find a pharmacy willing to work with the ASO.
Perhaps there is a similar program where you live?
The bottom line here isn't whether it is convenient to get your meds started now, but that your numbers indicate you should start now to prevent any further loss of vitality and immune system memory.
Hope something works out for you soon.
HUGS,
Mark
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::agrees with Mark, as I generally do::
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I waited 5 years and I have to say that I did feel like I had failed the day my doctor told me to start on meds.
Nonsense a month later I had a boost of energy that I can not describe to you, I was having a lot of skin issues and those are gone as well.
Every day whem I take my pills I think and pray that they will get into my body and do me good, corny but it helps.
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The bottom line is at least we have meds to start...
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I can understand you feel bummed, but think of it as taking an active role in your health. I am not on meds yet, but know that it is coming so I try not to put a negaitve spin on it.
Hope everything works out - you know it will :)
Pete
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Thank you all for your supportive comments. I appreciate them very much.
I realized after reading some of the comments that I might have accidentally given the wrong impression that I am depressed about starting meds or even feeling challenged, and rereading my subject line and theme of "make it" I can understand where that came from. I'm honestly pretty cool about the whole thing and have been aware for a while that this was coming and I feel pretty prepared as well as optimistic about my future.
Mark - I particularly appreciate your advice and I agree with what you are saying in principle. the fact that I'm hardheaded (which is especially enabled by feeling generally well) leads me to take what you said to heart and see what my doc says following tonight's appointment. To answer your question about the local ASO - frankly, they are having a lot of issues and it seems that the going conventional wisdom is that they are going to shut down. Charlotte is in bad shape as far as HIV/AIDS services and even the local non service advocacy group has had their Director leave without a replacement.
Anyway, I trust myself, Jeromy and my doc right now, and if he thinks there is a chance of me getting into a trial quickly and that it is worth it, then I will go for it, of course if he just slaps me upside the head and yells at me for even waiting this long and now contemplating a further delay then I will take his advice there as well.
Thanks again all.
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Iggy -- your attitude is sounding great. Fingers crossed that your new numbers will be better than the last (although those weren't that bad). And good news that you can take Atripla.
Please read our lesson on Tips & Tricks on taking Sustiva so that you are fully prepared for starting that drug:
http://www.aidsmeds.com/articles/SustivaTips_7550.shtml
And thanks for the update!
Peter
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Charlotte is in bad shape as far as HIV/AIDS services and even the local non service advocacy group has had their Director leave without a replacement.
Thanks for that ;) Now when my Mom tries to talk me into moving back to Charlotte, I'll have some more ammo about why it's easier to just stay here. LOL I've often thought (especially thru my recent difficult times) that moving back home and possibly getting screwed with obtaining my meds or health care wouldn't be the best thing to do. But you know how moms can be? LOL I've listened to her asking me to come home for nearly 20 yrs, I'm sure I can manage to stave her off a bit longer. LOL
I'm honestly pretty cool about the whole thing and have been aware for a while that this was coming and I feel pretty prepared as well as optimistic about my future.
Good to hear! But you've always seemed to me to be handling this reasonably. ;D
So many people only find out in a hospital with an OI and immediately have to go on meds and hope they don't die. Knowing for so long has given you the time to become knowledgable enough to know just when to start the meds. It's just another step in the medical care you've already been giving yourself knowing you have this underlying disease. (I could mention the shingles you had not long ago; but saying that would probably make quite a few of us "itchy" just thinking about it. LOL)
And let me tell you from my personal experience (a couple of times) that starting meds when you're not already horribly ill or at death's door, it's a heckuva lot easier to put up with any side effects you might have. ;) It's also a lot less scary to "wait for the meds to work" in bringing down a lower VL than when your VL is, say, in the 400,000 - 600,000 range. :o
Good luck with the meds ... and the funding. ;)
mikie
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6 years ( or almost) is pretty good~ I only made it 2 1/2!
I hope you can find one of those trials, but if you can't, I hope you have as easy and successful time with Atipla as I have thus far.
All my best,
Paul
Yep. And my bf was on meds 6 months after his poz test, and 10 months after his last neg test.
According to my doc HIV progresses to AIDS in 4 to 8 years on average. But most people who are aware of their status don't wait that long to start meds.
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Hi Iggy,
Glad to hear you're in the right head space to start meds. I guess we all know (most of us anyway) that its going to be part of the journey.
When I hear about your insurance concerns, it makes me realize how fortunate I am to somewhere that covers the cost of meds, with no strings. Takes away a lot of worry it seems.
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Good news all around yesterday!
Seems I am probably eligible for 1-2 clinical trials. We took my blood for a last look at numbers but barring some unforeseen and incredible rise in cd4's and drop in VL, I should be able to join a Viramune trial where I would have all meds and doc appointments covered. They are making my blood work a priority so I should know by early next week whether I'm in the study.
I do want to thank those of you for your warm feedback and guidance (Mark and Peter in particular) and I know that this is a piece of cake compared to what other' face, but that rationalization doesn't seem to mean squat when you are the one going through it at the moment and -for lack of a better word - freaking out a little in worrying of how to pay for doctor appointments and meds even when you have health insurance.
Finally in the terrific news category - Jeromy got some of his liver and HPC tests back and the VL is extremely low and there is no shown damage thus far with his liver! It really is nice to have a double whammy of good news for once. I'm a happy camper today! ;D
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That's great all around. Give my best to Jeromy.
Peter
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AWESOME! ;D
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Me Likes good news ... anybody's. Glad to hear it, Iggy
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Ig, that's great news honey. I'm keeping my fingers crossed that you will definitely be able to be included in the Viramune study (I take Viramune and Truvada). I think probably of all the HIV meds I have taken, Viramune has probably had the 'least' side effects, so that's a good thing in my book.
Hugs to both of you,
Alan :-*
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Iggy glad to see you got some trials to pick from. Good luck to you bud.
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Such good news for both of you and a much deserved break. Here's to the good streak continuing.
Mum
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Thank you again for the follow-up statements of support.
Once my med cost issue was covered, I was besides myself with happiness over Jeromy's news. I'm hoping this feeling of being very fortunate lasts as long as feelings of feeling like we were under.
I'm certain it will if I look for what is good in all.
Thanks again.
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this is good news iggy. Like you say, all around. You start meds. On a trail which covers all expenses. Activism at its best...you get an "all-expense paid" coverage and we (future benefactors) get to reap the benefits.
And for icing on the cake....jeromy comes up clean.
robert
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I tell you, this was terrific news indeed. Iggy qualifies for the study, and I couldn't be more supportive. This is a big scary step for Iggy, or for anyone who is starting meds for the first time.
I will be with him every step of the way, cause I can remember what it was like to start my meds in the beginning, and support is exactly what he needs right now. Not just from me, but from the people that love him.
Thank you all!!
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Great news indeed,
Glad it all worked out. For future reference in case you need it...look at Duke University....They are in Durham I know, but they have a very good HIV program with lots of research and assistance. I used to go to the Duke HIV Clinic when I lived in NC.
Stay strong and healthy...both you and Jeromy...you guys are looking great! :-*
Rich
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Well, i just got my last bloodwork results over the phone and I suppose the great news is that I am a shoe in for the clinical trials:
Cd4's 293
VL 116700
% 11
Again, the good news is that at least I qualify for the trials so it's all good.
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Hye Iggy,
This is great news.
Having just come off a 2 year trial I can tell you that I really notice the extra expense of meds and docs appointments now. I've had to readjust for the additional cost.
Good luck with the trial.
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Thanks for the update, Iggy. When do you start in the trial?
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Hey Iggy,
This is great news.
Having just come off a 2 year trial I can tell you that I really notice the extra expense of meds and docs appointments now. I've had to readjust for the additional cost.
Good luck with the trial.
Thanks for good wishes, and Yes, the aid in covering costs is the predominate immediate benefit that I am most grateful for. I am glad to be a part of the trial for just helping the study (this or any) and I am also glad that I can avoid sustiva issues which I have been dreading...but I would be lying if I didn't acknowledge how relieved I am (will be) when I start and for the next 2-3 years can be free of financial worries as far as med/doc costs.
Thanks for the update, Iggy. When do you start in the trial?
The nurse in my doctor's office told me to expect a call early next week from the research assistant for the trials which I assume will be some sort of interview first. Based on my conversation with my doc on Monday, I expect that if all goes well that it will take 1-2 weeks before I start.