POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: denb45 on August 15, 2012, 01:12:03 pm
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OK, went to I.D. Doc this AM, they didn't do any lipids this time around so nothing to report on those ;)
CD4s suck were way up in the 460 range, now down to 344 :-[
so she put my back on the Travada every day instead of every other day
says she suspects that the smaller dose isn't suppressing my virus like it
should be doing :(
she will re-test & do lipids @ a later date, she thinks it's a blip and wants to find out if it really is or not...
also she put my on Lyrica (Pregabalin(pre gab' a lin) 50mgs tid 3 times a day for neuropahthy :-\
said if I didn't like it you don't have to take it, but @ least give it a try tho :-[
and now the proof & labs :(
(http://i1213.photobucket.com/albums/cc473/denb45/DSC002471.jpg)
(http://i1213.photobucket.com/albums/cc473/denb45/DSC002481.jpg)
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Was there a viral load test done? That would have been a better indicator if the other day dosage was still working. At least I think so.
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Look @ the 2nd pic the one with the VL the one w/ HIV Quant & HIV Log
says I have a 2.5 <> log jump and that means a VL of 290 copies :-[
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Sorry, missed that. Just take your daily Truvada like the rest of us ;D You're not that special. ;) Unless you're stressing about having to take it daily for the rest of your life.
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The reason for not taking that much of a dose of the Travada was due to bad kidneys, so I've been on that dose since 2010, now the doc is doing this to see
if it's a blip or if I now need to take the Travada every day.she thinks it's a blip..
but that is not what's troubling me, it's this dam neuropahthy that I've had for the last 12 yrs. kinda makes it real hard to ride my bike & do my work-out routine..
I don't wanna turn into fatty old man ;)
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she will re-test & do lipids @ a later date, she thinks it's a blip and wants to find out if it really is or not...
Hey Dennis,
Did she say what the "later date " was? If It was me I would want to be retested at least by 9/1/12, if not sooner, seeing that these results were from 8/1/12.
I am assuming that since you had kidney issues, that tests will be done for this also, since you are now on the full dose of truvada.
I think I had one of these detectable viral load numbers, quite a while back, and it went back to undetectable by the next test. ( which was done within 3 weeks by the way).
Ray
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Yeah Ray, if I'm not mistaken, she said she did want to re-test sometime next month in Sept 2012, and will will call me with my new test results, could be blip she thinks it might be, kinda thur me a curb-ball there, when my VL went so high, don't remember it doing that since 2006 ??? she was just as stumped as I was.....
Hugs
DEN
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Dennis,...
My brain also trying to sort through the logic of this. Wouldn't it have been more logical, to remain on the every other day dose or Truvada, and just be immediately retested?
If the test come back undetetectable, after starting on the regular dosing of Truvada, how does one equate whether it was just a lab error, or viral breakthrough?
And if it comes back undetectable, do you still remain on the daily dose of Truvada?
Hope that makes sense.
Ray
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Good point Ray ;) one would certainty hope so, since 2006 that is the way it always was up until 2010, my guess is that she will keep it that way, I'm hoping ;)
Hugs
DEN
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Hey Dennis,
It does look like a blip, but 290 isn't horrible. Remember when undetectable meant less than 400?
I do see Ray's point, but I also know Michelle, whom you are still seeing, right? I would be guided by what she advised and see how it goes.
Are you able to take Ziagen? It might be a good backbone drug (it comes coupled to Epivir and is called Epzicom) to replace the Truvada if it still looks like there might be kidney complications.
Hang in there. I know this can be depressing, but you'll get through it. I have faith in you.
HUGS,
Mark
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Michelle yes, I still see her ( love the new clinic digs ) bigger than the old Truman ST. ;)
Yeah I remember that ( the good ole days) unfortunaley no on the Ziagen? I already took that for about 5 yrs. and Epzicom she says no ,due to the Ziagen, so if it's not a blip, she says we'll go w/ plan B maybe add some more norivr, some of these newer more re-vamped ARVs I already have resistance too due to taking a older version of them about 10 yrs ago.....
I'm goona see how this all go's and plays out next month :o
Hugs
DEN
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Dennis, I've had neuropathy for years. I did take Gabapentin, 900 mgs three times a day. My doctor switched me to Lyrica and I take that twice a day. It seems to be doing alright. I still exercise, no need to stop that.
I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.
Just want you to know you're not alone.
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I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.
I guess I have been pretty fortunate compared to some of you, when it comes to the neuropathy.
I used to mention this back and forth with Tim ( Moffie) , years ago. The neuropathy pain I experienced, back in 2004, was horrible ! Water coming out of the shower head, felt like nails entering my feet. It lasted several months, and eventually got less and less.
It was bad enough, that I had to change jobs. And it still does flare up, from time to time, but never to the point that I am in any kind of intolerable pain.
At it's worst pain level, my doctor ( at that time) gave me about a month's worth of Amitriptyline to try.
I ended up never taking it, because after I found out that it was used as a anti depressant, I kept thinking, why is the doctor giving me this. I wasn't depressed, the problem I was having were in my feet, not my head. :-\ I never had any issues with sleep etc.. I ended up never taking it, and ended up tossing it. I certainly didn't want to add another daily pill.
So today,... a very occasional aspirin, is all I take for it. It's when I am standing or sitting for long periods of time, that it bothers me the most. If I continue to move, walk, there really isn't a problem.
Somewhere down the road, the doctor was going to prescribe Lyrica, but I told him, I didn't really need it, and as a result, never tried that drug.
Dennis, I hope the Lyrica, gives you some sort of relief.
Ray
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Dennis, I've had neuropathy for years. I did take Gabapentin, 900 mgs three times a day. My doctor switched me to Lyrica and I take that twice a day. It seems to be doing alright. I still exercise, no need to stop that.
I guess I just try to not pay so much attention to it, though of course when it flares up it's hard not to.
Just want you to know you're not alone.
:-*
Thanks
DEN
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It's the cramping & burning of my legs & feet, also it's that horrible tingley feeling I get when I can't feel my feet, and all they do is just BURN all the way up to my legs kinda hard to walk feeling that way as it's also very painful too :'(
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It's the cramping & burning of my legs & feet, also it's that horrible tingley feeling I get when I can't feel my feet, and all they do is just BURN all the way up to my legs kinda hard to walk feeling that way as it's also very painful too :'(
Its a horrible condition isn't it . The thing I dread most is bedtime , its almost like coming face to face with the enemy when I go to the bedroom to sleep .
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It's been a long & very hard decision, as I've been struggling with wanting to take the Lyrica....
So today, I didn't even fill the script, I told the pharmacy not to even bother filling it.....
I just don't like the idea of taking more pills everyday, I can just take some aspirin if the neuropahthy get's too bad or give myself a physical time-out :-[
it was a very hard decision for me to make, but I did it,
so wish me luck....
So instead I've decided to try message therapy & some acupuncture.....
I'll be looking into this in my local area....
Discuss? feedback is good, so I'm listening......
Hugs
DEN
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I don't know what the fear is about Lyrica. I take it twice a day with no problem. I know everyone's different, but it may help.
Good luck with the massage and acupuncture. I would love to try those, for reasons beyond just the neuropathy but don't have the cash.
Years ago at the second treatment (for drug abuse) I was in, they did acupuncture for withdrawal. It helped tremendously. I'm sure you'll find some benefit.
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It's been a long & very hard decision, as I've been struggling with wanting to take the Lyrica....
So today, I didn't even fill the script, I told the pharmacy not to even bother filling it.....
it was a very hard decision for me to make, but I did it,
so wish me luck....
So instead I've decided to try message therapy & some acupuncture.....
I'll be looking into this in my local area....
Discuss? feedback is good, so I'm listening......
Hugs
DEN
Dennis,
I support your decision. I know how tough it is to wrestle with these decisions, but honestly, I haven't seen enough evidence that Lyrica helps much at all.
I posted this a while back in the research forum:
A couple of interesting articles to read:
http://www.medicalnewstoday.com/articles/245032.php
Related article:
http://www.inpharm.com/news/172526/lyrica-fails-diabetes-and-hiv-pain
http://www.thebody.com/content/67521/guinea-pigs-crash-test-dummies-and-hivneuropathy-t.html
Wishing you the best---Ray
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@ Ray, Thanks for the links Ray, I found out a lotta things about the lyrica that I really didn't like just by reading some of that, most of it I already knew about ;)
also, it has a very high price-tag even w/ my current BCBS Ins. it's kinda pricey for a one month supply, and to top it off it's not even formulary ( Not on the ADAP list for my State) :'(
I really need to go to the VA, Ray like you did 2 yrs ago, I'm getting ripped-off by BCBS & Medicare :-[
@ Betty the massage and acupuncture, well @ least the massage is doable, and not very pricey @ all we have a school of massage here in ABQ. I heard that they are very professional w/ this :)
the acupuncture, that's very pricey and not covered by Ins. or Medicare, so that ain't gonna happen, I checked some of it out locally, and it scared be-jeebus outta
me, I don't wanna end it with HEP C :-\
Hugs
DEN
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Massage and acupuncture: two benefits taken away from us by our local AIDS Service Agency (Action Aids). They had the nerve to send Kurt a survey and he gave them an unsatisfactory rating. Imena really....they can pay those stupid unqualified employees of theirs but not pay for client services. Burns me up.
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Massage and acupuncture: two benefits taken away from us by our local AIDS Service Agency (Action Aids). They had the nerve to send Kurt a survey and he gave them an unsatisfactory rating. Imena really....they can pay those stupid unqualified employees of theirs but not pay for client services. Burns me up.
Yeah I hear ya Joel, as I don't qualify for a lotta stuff at my local ASO, I'm very sad that some of these programs the did serve the ones who really needed them and benefited by them are slowly being cut
Burns me up too >:(
Hugs
DEN
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I support your decision. I know how tough it is to wrestle with these decisions, but honestly, I haven't seen enough evidence that Lyrica helps much at all.
I support Dennis' decision also; hopefully you weren't implying that I"m being an ass. Lyrica has helped me more than Gabapentin. I suppose for every negative article there's a positive one. And the side effects from Lyrica have been a lot less than Gabapentin.
Dennis, I know acupuncture's not covered. It sucks. It really is relaxing, at least what I've experienced. I believe if you get a reputable agency there shouldn't be a fear of Hep C. Have there been reports at your agencies there? That would cause concern.
At the ASO I work at (which I used to be a client at), we've never had either massage or acupuncture. We barely get funding to keep the agency open at times. Our money mostly comes from the state on grants, and it's been slashed. The managers took a paycut so no employees would lose their job.
But anyway, Dennis, I hope the massage helps. We have a beauty school here where people take massage and I actually had one done there once. It didn't help much, as they didn't do deep massage; it was all very light. Let me know how things go, if you get any relief this way.
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Services get cut because you old LTSers stopped dying in significant numbers. Now there are too many people at ASOs wanting more services. Had to stop at some point, I'm afraid.
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I support Dennis' decision also; hopefully you weren't implying that I"m being an ass.
Not at all Betty. I never implied that or believe that. That's ridiculous to even think I May have thought that !
Ray
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Hey Dennis,
Sometimes a time out is good. Plus massage and accupunture plus homeopathic medicine can be great. I too have kidney issues, stage 3, so whatever I take or eat is always under the scrutiny of my kidney doctor. We all have a myriad of symptoms in many different ways. I've learned to kind of manage my own health care with the help of my doctors because it seems many of them just have given up.
I hope your neuropathy (sp) gets better. Eastern medicine might help that too instead of the Lyrica. Anxious to hear how it all goes. You deserve all the best life can offer.
Take good care,
Jeff
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Not at all Betty. I never implied that or believe that. That's ridiculous to even think I May have thought that !
Ray
I just don't want to be misunderstood. I realize that because Lyrica works for me does not mean it's right for everyone. But I also believe it can't hurt to try, as long as one's totally ready for it. If there's doubts, it most likely will not work.
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Dennis , I am currently on a waiting list at my Hospital for what is basically chili treatment.
The area affected is covered in a cream with the ingredients off chili that causes the burning sensation.Then the area is wrapped in cling film and left for an hour.
I have had PN since 1993 with 2 distinct increases in severity after the chemo treatments. Currently the treatment is venlefaxine an antidepressant that reduces the burning/frizzing and sudden sharp pains , fentalyn patches for bone pain and the sense that the ankles are going to snap ,and that the feet are bound. This after now a small amount off walking on hard surfaces flares up breaking throw the regular pain controllers . Then my ankles to my knees feel as though they are full off toxic sludge ,burning from the inside out. If this does not reduce after a couple off hours I take 50 to 100 mg of morphine sulphate .
So I am hopefull for any treatment that helps, I put up with a lot off pain before this cocktail off pain killers as I was reluctant to use morphine base products however after the end off the first cancer treatment I was desperate to decrease the constant pain and discomfort off then my whole body, the relieve was enormous and really helped my recovery process.
I am in Orkney at the moment I will gather up information about the chili treatment around the 12 Sept when I am back in London for Dental/Jaw treatment.
yours
Michael
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Thanks Micheal, that chili-treatment sound very interesting, it is certainly something I've never heard of before :)
Us HIV/AIDS Dinosaurs, well at least some of us, really have been thur hell and back, so to speak ;)
like they say, what doesn't kill ya, makes you stronger ;)
Hugs
DEN :)
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[forbidden foray]
Forgive my foray into LTS, but you guys know I got your back and I'm only going to post here when I have to shout at explain the rules to someone or have some relevant information.
That "chilli" treatment has been around for a while and when used medicinally, it's called Capsaicin (http://en.wikipedia.org/wiki/Capsaicin#Medical). It's also used for lingering post-herpatic neuralgia from shingles as well as for PN.
I think there was someone who used to (or maybe still does) post here who has tried it for either PN or post-herpatic pain, but I can't recall his results. You can get it on prescription and you can also get it over-the-counter. It's in some gels/creams for arthritis relief as well.
[/forbidden foray]
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My diabetes doctor recommended capsaicin creme for my foot PN . I have had a painful sensation on my left foot that feels like a rolled up sock even when I'm barefoot , it drives me nuts at night and is very painful . She did add that it works well if you can stand the burning sensation it causes . She told me it works for many of her patients with localized PN foot pain .
I haven't tried it yet because I'm in pain management and it doesn't bother me if I take my medication before bedtime . I would like to hear if anyone else has used this before .
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Capsaicin, Salves, oils and lotions, along with a very good strong handed masseur is well worth a try, I'm all for this idea.......thanks for the tip Ann ;)
Hugs
DEN
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I have had a painful sensation on my left foot that feels like a rolled up sock even when I'm barefoot , it drives me nuts at night and is very painful .
I know that feeling!( although I don't experience that at night) The main thing I'm dealing with are the ankles. As long as the foot pain doesn't increase, I will be able to deal with that.
The ankles are a different story. I can only wear loose fitting/ loose knit socks. Anything tight, and it feels as though, I have huge rubber bands around my ankles. I usually buy those "diabetic - neuropathy socks. I get those at the Goodwill stores, and they are comfortable and durable. They don't squeeze the ankles.
Ray
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Capsaicin is sold everywhere, though I'm not sure about the cost. I've often wondered how it worked for PN. If anyone has experience with this, please speak up.
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I was asked if I would be part off a group having a controlled application , not 100 per sure but I think one off the Doc,s at my pain control clinic is doing research on there own initiative and not sponsored by the drug company, that's the bit I am unsure off. However I do know its research.
So Betty I will report in when it starts. And lets hope some one else out their adds there experience , it can be the start off Patient research.
A life without PN dreamy thought.
m