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Author Topic: to switch or not to switch...  (Read 8949 times)

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Offline frenchpat

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to switch or not to switch...
« on: June 25, 2006, 10:12:16 AM »
hi all,

I am new here and have read most forums in search of advice. I've gleaned some here and there but I find that with all the different treatments we use there hardly is a standard answer to any question. So here's mine:

I've been declared hiv+ for about 4 years and started the meds 18 months ago. Prior to taking meds I had complementary treatments, mostly phytotherapy. By the time I had to take meds my v.l. was at 1 300 000 and my cd4's at  250. I felt very tired and thought I had lypo. What in fact was going was my muscle mass AND my fat.

My regimen is a dual therapy plus as my immunologist calls it: epivir + zerit + various phyto and micronutrients. My vl is low though not undetectable and my cd4's around 400. I feel great, have energy and regained my muscle mass through exercise. But now lypo has clicked in.

I've been rapidly losing fat over the past 7 months and the loss has been pretty much evenly distributed, lucky me. I am of course concerned with my face first as the rest of my body looks ok since I am quite the sporty type - just hoping no more veins will show up ::)

Now the questions are:

1) has anyone here had the same sort of meds with same or different effects?

2) has anyone had the same meds and switched, because of lypo or else, and as a result saw the lypo slow down, stop or actually reverse.

3) I guess deep down the ultimate one is: should I switch or should I stay with the meds?

My doctor says that hiv itself will eventualy do this, as other medicines do in fact. He is also reluctant to switch solely because of lypo.

I am concerned about switching too early as one of the factors is of course staying ahead of the meds; Lypo scares me a bit but my current regimen leave me in peace save for the irregular bout of diarreah. By slowing or stopping the process I wish to delay the day when I'll have to get bio alcamid shot in my face.

Thank you for your advice,

pat
People have the power - Patti Smith

Offline pozniceguy

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Re: to switch or not to switch...
« Reply #1 on: June 25, 2006, 12:51:24 PM »
Pat

   I was at your position about a year ago..I have been on MEDS a lot longer but the key items after the HIV itself are the MEDS...Zerit being the worst..Epivir  and others are also contributors.....Everyone has their own issues  but I have switched off the Zerit and Epivir to  ,...EPZICOM ..a combination drug...too soon to tell the difference if any but it will get rid of the Zerit problem...I have also entered into Sculptra treatments for the Face....If I continued with the Zerit the Sculptra would also be affected....These things affect mostly the distribution of the fat..
   You mention the loss of muscle...I also went through that..My DR.. put me on HGH (  SEROSTIM ) and a structured exercise program...I stopped losing muscle and regained some   ( never have been very big  ) I have reduced the number of SEROSTIM shots but continue the exercise..will probably stop the SEROSTIM soon....
   Only you can decide about the MEDS...the Lypo can be very frustrating..people always asking if you are sick etc..plus the "look" with the very hollow cheeks and skinny legs/arms....I chose to change,  the DR. prescribed new MEDS 
   Continue to follow the developments in this aspect of HIV....This Forum is the best..up to date info from people who care and are involved every day..

Good luck..

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline jack

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Re: to switch or not to switch...
« Reply #2 on: June 25, 2006, 04:59:25 PM »
pat, i had the weight loss thing early on but since late 90s have been a victim of the fat deposits in strange places. Zerit is blamed for a lot of this,but havent done it since late 90s. Many PIs cause it also. I think it is wise to change drugs if possible. Lipo is horrible.

Offline frenchpat

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Re: to switch or not to switch...
« Reply #3 on: June 25, 2006, 06:11:03 PM »
thank you guys,

actually, the muscles I lost early on, I think that was definitely hiv related, like i was melting away. this stopped as soon as I took meds and I regained all. When the lipo started I decided to beef up a bit to compensate, or try to. Since it is good to have muscle mass when hiv+ I thought why not. And it should help in preventing some skin flapping ;D, at least I will have tried.

Re: filler treatments, pozniceguy, you are saying that meds will affect the way the filler works?

thank you for the replies, it is good to know of a place where I can ask and share about this, not having anyone hiv poz that I am close to.

pat

People have the power - Patti Smith

Offline frenchpat

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Re: to switch or not to switch...
« Reply #4 on: July 10, 2006, 02:24:37 PM »
Hi everyone,

I am reactivating this thread after visiting my doctor today.

As I am staring lipo in the eyes right now and it is not too bad yet, I've asked my doctor what the options were if I switched from my current epivir + zerit duo. He suggests Ziagen + Kaletra + Viread.

I am very new to all the jargon and have a hard time understanding all technical stuff Newt writes here. So please give me the lowdown on this combination and I promess I will try to learn "Newtspeak" soon.

Pat

People have the power - Patti Smith

Offline pozniceguy

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Re: to switch or not to switch...
« Reply #5 on: July 10, 2006, 04:29:41 PM »
Frenchpat .. I hope I didn't confuse you with the first answer.   Yes Zerit and Epivir are two of the meds most associated with Lypo.....The other problem ..the muscle loss is called "wasting" but you seem to have overcome most of that.   
The "filler" Sculptra....is not really a filler...it is injected under the affected areas and over a period of weeks/months  a "matrix forms and fills in the hollow spots.......because of the way Sculptra works the meds have the same effect of the matrix/fill as they did on your original surface...... so if you go for a Sculptra type product it is a good idea to get out of Zerit and Epivir...  A sculptra treatment should hold up for 2 yrs and then may require a booster to re-generate some of the matrix  ( All this info comes from my Dermatologist who is performing the Sculptra procedure for me)

As you have been told the HIV itself contributes to the Lypo.......Many Dr's ..especially the conservative ones..are very reluctant  to switch you from a med regimen that is working for what they consider a "not serious" problem  most Dr's will   go along if you insist because there are many choices available now that don't seem to have these side effects.
There are Dr's who consider this a problem and some studies are being sponsored in California to find the real mechanism behind this problem...hopefully come up with "cure" or positive treatment.

You can decide for yourself what course to take...I took the Sculptra  because I was real tired of the skeleton look and the overall veiny look in my face...so far nothing for the rest of the bod but diet and exercise.

Sculptra for the the faces seems to be working ...I have 2 more treatments to go......
You mention Bio-Alcamid..this is a "permanent filler"  people have Had mixed results because it is litterally a lump ( a well shaped one put under you skin )  It is difficult to remove and "reshape"   My Dr does both procedures and reccomends the Sculptra for HIV because of the more natural ,flexible result.
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline frenchpat

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Re: to switch or not to switch...
« Reply #6 on: July 10, 2006, 05:05:37 PM »
Thank you Nick,

luckily my doc does take the lipo seriously and will respect my choice; he's also aware that the chances for a drug the patient hates taking can lead to less treatment adherence and other psychological effects depending on the patient.

we've talked about possible face treatment, even if I switch meds. I will see 2 specialists in the next coming month. What is yours take on starting early, when lipo isn't too bad vs. waiting more time? I've read conflicting opinions on the subject. I am not very keen on all things medical ::) but I know I am in for a long lasting relationship this time around :D So I'd rather make an informed choice.

Pat
People have the power - Patti Smith

Offline pozniceguy

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Re: to switch or not to switch...
« Reply #7 on: July 10, 2006, 05:33:56 PM »
Pat ,   
My Lypo had progressed to the cat 5 stage....the worst...very bony sunken cheeks, skinny neck , overall bad....I was fortunate enough to be able to join a Manufacturers trial for the Sculptra.....basically six treatments and several follow ups over 5 years.   NO CHARGE.......the going rate for this in the USA would be nearly $10,000......

The product is sold overseas ( Europe) as NEWFIL?  I have no idea what charge....I would recommend starting soon as noticeable...it will get worse and take more to fill in ( cost more )   It  is supposed to last for 2 yrs or more
( part of the study ) ...get rid if the "Bad Meds" .....and I am told by experienced Dr that a "booster will usually bring it back after that time.

The first reaction from people who haven't seen me for a while is (  you gained weight ??? )  I haven't ,actually I lost 5 lbs...and I have not quite finished the treatments.  A very encouraging sign to me that people really notice exactly how you look   .. used to ask.... when are you going to stop losing weight??

Once you are in the HIV world you will be here a long time ...take advantage of whatever is available to you....

I was diagnosed HIV+  1994   probably infected early 80's   thing have come a long way...
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline bobino

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Re: to switch or not to switch...
« Reply #8 on: July 11, 2006, 12:35:04 AM »
Hi Frenchpat,

I have lipo, but it's in its relatively early stages.  My cheeks are a bit sunken and my face has thinned out, but most people wouldn't yet recognize it as lipo.  I'm going next week to have my first Sculptra treatment.  I decided to act on it early.  The doctor says it will cost between US$1530 and 2200 for three treatments, and he thinks that should be plenty for me.  I live in California, and I may be able to get the procedure covered by insurance.  So I say take the initiative and do something about the problem if you can before it gets too severe.

John
Suivons les rivières
Gardons les torrents
Restons en colère
Soyons vigilants

Offline frenchpat

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Re: to switch or not to switch...
« Reply #9 on: August 23, 2006, 02:33:39 AM »
Hi everyone,

I still haven't switched but gathering more info about possible meds.

Though I read very good things about Kaletra it seems that Reyataz has less impact on your fatty tissues; anyone here care to comment on that? What about other side effects due to Reyataz?

Bobino, I hope all is well with the Sculptra treatment?
I will see a specialist next week to start the procedure which at this stage is mostly paperwork/picture taking etc.

Pat
People have the power - Patti Smith

Offline jack

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Re: to switch or not to switch...
« Reply #10 on: August 23, 2006, 07:28:37 AM »
Pat, reyataz was the first drug I took after a three year drug holiday(because of lipo and resist)and I gained a ton of weight on it as well as terrible gas and diarrhea. On Kaletra I had very few problems after the first 2-3 weeks. That being said, we all seem to get different sides from diff drugs. I think you need to get off the zerit as soon as possible,cause once the fat deposits start, they are almost impossible to get rid of.

Offline bobino

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Re: to switch or not to switch...
« Reply #11 on: August 25, 2006, 12:35:08 AM »
Hey Frenchpat,

Thanks for asking about my Sculptra treatments.  I had the first one back in July, and it went really well.  I couldn't believe how easy it was.  I had planned to take the afternoon off work after getting my injections, but I felt perfectly fine and looked normal, so I went straight back to the office and worked for the rest of the day.  My next appointment is this coming Monday, and I can't wait.

As for effectiveness, so far I can see very little difference, but this is to be expected after the first treatment.  I anticipate that I will see more "filling" after my second and third treatments.  Mind you, this isn't some kind of miracle cure.  All it does is fill in my hollow cheeks.  It doesn't do anything for the many other symptoms of lypo that I have -- the shrinking lips, the drooping eyebrows, the wrinkles, the other signs of premature aging, not to mention the fat loss in my arms, legs, and buttocks.  But at least guys at the gym have stopped giving me that look.  And that's something.

Good luck with both your meds and your Sculptra treatment, if you choose to have it.

Suivons les rivières
Gardons les torrents
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Offline frenchpat

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Re: to switch or not to switch...
« Reply #12 on: September 13, 2006, 06:35:33 PM »
Hum, call me slow, but I haven't made the switch yet. Not that I have a question about switching anymore, no, I want to switch. Question is what to?

As I stated earlier my doc proposes Kaletra + Ziagen + Viread. Newt had some comments about this being an unusual choice but probably a working one, and a question regarding: why ditch epivir. This had me thinking. And I've read a lot on this site, a bit more on others, and I'd like to share with you my reasoning so that you can comment on it.

1) why ditch everything indeed? I am aware that epivir is sometimes associated with lipo but at this time my main concern is to ditch Zerit who seems a more likely culprit. So I think I want to try and keep Epivir in the equation, for now.

2) Kaletra: looks very good on paper and as with these drugs some of you say it is great, some had to get off it because of increased triglycerides shooting through the roof. Unfortunately Kaletra is far from innocent in lipo problems apparently, but maybe not as bad as Zerit. Looks like Reyataz is a kinder solution to me when it comes to side effects with fatty tissues.

3) Viread: seems a little harsh on your kidneys. Slight issues with Reyataz. Other side effects just standard ones.

4) Ziagen: Nice thing about it is that it is slightly older (approved FDA 98), meaning there is more recorded history about it. I like that. Not that I am against progress mind you, but I am more reassured by something proven and tested than by the newest magic bullet.

After toying with these considerations I plugged these drugs into the Cool Tools to see what came up in terms of interactions. And the winning combination by far seems to be this:

Reyataz (possibly boosted with Norvir if needed) + Ziagen + Epivir

Now, I am no doctor and I will not tell mine what to do, but I would like all the willing cognoscenti here to give me their two cents about this. And then I will discuss it with my doc and finaly switch.

thank you for your help

Pat
People have the power - Patti Smith

Offline newt

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Re: to switch or not to switch...
« Reply #13 on: September 14, 2006, 12:14:27 PM »
Pat, good question

On the Reyataz, your are spot on.  Boosted Reyataz is a strong and effective PI base for a combo and is generally kinder to the lipids.

On the nukes, if your viral load has been above detectable, certainly if above 1,000, for some months you may well, or rather, most likely to have, the M18V mutation which causes resistance to Epivir (3TC) and Emtriva (FTC).  This is not a problem if 3TC or FTC is used with Viread, since Viread is extra-effective against M184V strains of HIV.  Therefore 3TC or FTC plus Viread is a viable choice.  Ziagen works the same way, so the pairing of Ziagen + Viread + a boosted PI is  sensible choice.  Recent studies have show good results for these two nukes with boosted PIs.

Personally, without a resistance test, I would go for a Viread based pair of nukes, using it with either 3TC, FTC or Ziagen - FTC is prob. the simplest because it comes in one handy 1 x day combined pill called Truvada.

If you want to go Ziagen + Epivir, please get a resistance test first.  These nukes could turn out to be a poor choice, since they share some common resistance characteristics.

Viread has a reputation for being hard on the kidneys, but it is not really justified based on the research to date.  However, you are right, Ziagen is older, and, allergy aside, seems relatively benign for a nuke.

- matt
"The object is to be a well patient, not a good patient"

Offline frenchpat

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Re: to switch or not to switch...
« Reply #14 on: September 14, 2006, 02:22:33 PM »
Matt,

I've never been undetectable but rather stable at around 5000 copies whilst on the dual combo of zerit and epivir. Never been on tri-therapy. Does that still qualify me for m18v mutation probability? (the dual combo got me down from 1.3 million copies to 4-5 thousand, whilst cd4 went from 225 to 370 in 18 months.

Pat
People have the power - Patti Smith

Offline newt

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Re: to switch or not to switch...
« Reply #15 on: September 15, 2006, 06:28:01 AM »
Yes, a long-term viral load of 5,000 while on Epivir makes the M184V mutation very likely. A resistance test will tell you if this is so.

- matt
"The object is to be a well patient, not a good patient"

Offline frenchpat

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Re: to switch or not to switch...
« Reply #16 on: September 25, 2006, 04:17:43 PM »
Hi everyone,

just back from the doctor. Pending the results of my resistance test, I am offered another choice over the previous Kaletra/Ziagen/Viread. The second option is Lexiva (called Telzir here)/ Truvada/Norvir.

Any idea / experience about how these combos affect lipo?

How about other side effects?

thank you all for your help.

Pat

edited for typo and adding a question
« Last Edit: September 26, 2006, 06:26:15 PM by frenchpat »
People have the power - Patti Smith

Offline livinit66

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Re: to switch or not to switch...
« Reply #17 on: October 22, 2006, 12:16:28 AM »
Hey all,

I have been on Trizivir since testing poz three years ago.  I have slowly been "wasting" (lost some of my behind, arms, legs,etc), and my doc recommended that it was due to the AZT.  I have just switched to a combo of Sustiva and Epzicom (comes with a little side affect drama), but am hoping that the wasting will subside.  Any thoughts?  

Offline suzieque

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Re: to switch or not to switch...
« Reply #18 on: November 15, 2006, 06:15:52 AM »
Hi,
  Have had lots of problems with lipoatrophy on various combinations,most recently on reyataz, epivir and viread. At the time my doctor said that none of those meds would cause it. I took a treatment interruption, fat came back, but back on the same meds again now. After just one month I can already see some fat loss on feet and hands, and since the time I first talked to my doctor about it he said he has seem several cases where only viread could be the cause ( the only constant). SO am about to change onto two PI's and epivir, although we are considering the controversial change to just kaletra alone. Anyone had any experience with this?

Offline antibody

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Re: to switch or not to switch...
« Reply #19 on: November 21, 2006, 02:44:13 PM »
i tested pos about 4 years ago. i had wasting problems due to poor appetite. i lost alot of fat in my face, neck, arms, upper body, legs...hell i lost fat just about everywhere. i have big veins in my arms bluding out.  all this was before ever going on meds. i started Atripla (A-Crippler is what they shoulda called it) in july. i have been on Androgel for about a year and i've heard that tends to eat fat too. i am able to eat much more sinse being on treatment but have only been able to put on about 6 pounds. perhaps i waited to long out of fear of having lipo problems?
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Offline newt

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Re: to switch or not to switch...
« Reply #20 on: November 21, 2006, 04:20:20 PM »
Pat

Truvada, gd  :) the two drugs it contains don't seem to cause fat loss like d4T.

Any boosted PI will do here.  Kaletra, Lexiva, Reyataz will be good. Lipid (blood fat) wise Reyataz is least likely to raise your cholesterol levels.

Why ain't you offered Reyataz too? It's the only genuinely once-a-day PI and uses 100mg/day rather than 200mg/day ritonavir as a booster. You can do Kaletra and Lexiva 1 x day if you've never done PIs before, but some people's stomach's do find 200mg ritonavir in one go is too much to bear.... As always it's very individual how you react.

Livinit

You are likely to see over some months a slow return of fat now you's off the AZT, but, I ain't gonna beat about the bush, sometimes it never comes back, and you need to give it time, 6+ months.  Yr doc can measure this using a DEXA scan (a kind of x-ray that measures the mix of fat, bone etc in yr body) cos sometimes it's coming back but it's hard to see (motivational this can be, but also not if it confirms no change).

Suzie

Good luck, let us know what happens eh? I seem to remember you;s in the UK(?) - if you are you can ask your clinic to check the PI levels using therapeutic drug monitoring (requires a blood test) - Univ of Liverpool run a good (and TDM service and you can send the samples by post.  This can be important to get the dosing right, including the amount of ritonavir booster, and so avoid PI side effects, incuding the squits, but more importantly a bad effect on lipids and glucose/insulin metabolism. It's not an expensive test (bout £40/drug).

- matt

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"The object is to be a well patient, not a good patient"

Offline frenchpat

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Re: to switch or not to switch...
« Reply #21 on: November 21, 2006, 05:34:52 PM »
Pat

Truvada, gd  :) the two drugs it contains don't seem to cause fat loss like d4T.

Any boosted PI will do here.  Kaletra, Lexiva, Reyataz will be good. Lipid (blood fat) wise Reyataz is least likely to raise your cholesterol levels.

Why ain't you offered Reyataz too? It's the only genuinely once-a-day PI and uses 100mg/day rather than 200mg/day ritonavir as a booster. You can do Kaletra and Lexiva 1 x day if you've never done PIs before, but some people's stomach's do find 200mg ritonavir in one go is too much to bear.... As always it's very individual how you react.


Matt,

After reading all the info you and Gerry provided me with (post-resistance test results), and looking around for more info about the options, I am thinking that Reyataz is the one I'd like to start with.
So I have emailed my doc, asking him to consider it and to let me know how he felt with Reyataz v.s. Kaletra and also about the Ziagen issue (dropping it altogether and go the Truvada route). 
I haven't had an answer yet but will press him for one within the next two weeks. I am to switch in december after a work trip abroad (I decided against mixing work, travel and new meds, seemed wise  ;D).

Thanks for following this up

Pat
People have the power - Patti Smith

 


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