Author Topic: Can anyone recommend a combo for me? (Read 7941 times)

JamieD · « **on:** October 10, 2007, 07:25:15 pm »

I know everyone's combo's are different, and that everyone gets different side effects from each combo but I am just hoping for some GENERAL ideas. Obviously I can not prescribe drugs to myself (although I have bought them before, but I am not buying drugs THIS expensive) so anything I would like to be on will have to be approved by my doctor first. My HIV drugs are not something I mess with AT ALL. Adhearance is not an issue for me, and I NEVER ever miss a dose no matter how many pills I have to take. EVER.

However, I have a few considerations I'd like you to think about before recommending.

1) I am taking Lithium and it's hard on my kidneys, along with high dose aspirin therapy. Neither of these drugs in something I am willing to stop taking.

2) I would like to limit the likelyhood of longterm toxicities.

3) I have a long history of Bulimia Nervosa, and Obsessive Compulsive Disorder so drugs like Efavirenz are out.

4) I really would like to continue on the Reyataz/r, but would prefer to not have to boost it at all.

Originally I was taking Reyataz/r and Truvada, but it was kind of hard on my kidneys with all the other stuff and I wanted to limit the long term toxicities of the NRTIs, so I switched to Nevirapine and Reyataz/r. Unfortunately, everyday since I have been off of the Truvada and on the Nevirapine the room doesn't seem to stop spinning for very long and I have to lay down a lot. I called my doc and he said for me to just go back to taking Truvada and Reyataz/r for now and we'll talk about other drugs at our next visit.

Help, please.

Guess this means no IL-7 study.

Moffie65 · « **Reply #1 on:** October 10, 2007, 11:52:32 pm »

Jamie,

Are you actually serious here? I don't know anyone on these boards that would take the risk of actually fulfilling your request.
Can anyone recommend a combo for me?.

You need to take care of this I have a long history of Bulimia Nervosa, and Obsessive Compulsive Disorder , or else it won't matter how many combinations you go on, because your body will not tolerate this much messing with HIV medications. This is not a Cocktail Bar where you order the best tasting handfull of pills; you order the ones that are going to keep you alive, but you seem to have already set up the perameters for your Cocktail Quest. Not a good sign my friend, not a good sign.

Please take care of your important issues first and see if you might have many less problems with your HIV cocktail. We are talking life and death here, so now is probably your time to make the right choice.

Love,

JamieD · « **Reply #2 on:** October 11, 2007, 12:10:16 am »

Yes, I am very serious.

Those are issues I have had since before I entered middle school, so while I am working on them they aren't going anywhere any time soon.

I care about quality of life, as well as being healthy. If I can avoid a buffalo hump, an AIDS face, and a Crix Belly I think I would like that. And I don't feel bad about wanting that either. My ID doc asked me to do some research and to come back to him in a month and we will talk about a different regimen. Period. My VL is undetectable on both of the regimens I have taken.

Moffie65 · « **Reply #3 on:** October 11, 2007, 12:19:43 am »

I look forward to seeing your hump and your belly in about 20 years. Oh wait, I will be long gone by then.............................................................................................

pozattitude · « **Reply #4 on:** October 11, 2007, 02:15:33 am »

Jamie,

Moffie's post is the ONLY response you can get.
I don't mean this in an antagonistic way, and Moffie's response is a caring response. Only you and your doctor can decide on what medication you should take.
Eating disorders can be fatal to anyone and the effects on the body are just as "unattractive" and an "AIDS face".
I know you had some of those issues long before you tested poz and that you are working on them. I know it is hard.
The Drugs link can give a lot of information on the drugs that are available. This is a great tool for research, you can look them up, the side effects and then discuss it with your doctor.
I wish you only the best

Rich

Matty the Damned · « **Reply #5 on:** October 11, 2007, 03:12:18 am »

Jamie,

I agree with Daddy Tim and Rich here, we can't recommend a combo for you - especially given the other medications your various medical conditions require you to take. By the way, I'm glad you are sticking with the lithium carbonate, that's very important.

Any combo will have to be determined by your doctors and agreed to by you. We can certainly give you some general advice about HIV medications, but any advice you receive here cannot replace the advice of your doctors.

Please do keep us updated, we are here to support you through this difficult time.

Best regards,

MtD

mjmel · « **Reply #6 on:** October 11, 2007, 04:55:25 am »

I, also, would strongly advise you to work on the getting the disorders in check because of the nutritional/hydration issues alone. If you can accomplish that than any drugs you take will have the chance to do their work in your system. Aidsmeds combos all have differing levels of toxicities...and in a nutritionally deficient system and on an empty stomach the side effects could be much too harsh. Much too harsh.
BTW, drink plenty of water to flush kidneys as much as possible. You already know that, right? How much water are you drinking daily?
Something to discuss with your doctor: Would he consider adding NOVIR to your current meds. It is pretty much useless by itself but an efficient 'booster' to some of the other aids drugs. The important thing is to discuss options with a qualified person, such as your physician who if familiar with your individual system and circumstances.

Mike

Dragonette · « **Reply #7 on:** October 11, 2007, 05:50:08 am »

Jamie,

I'm with you on the fear of lipo, I'm very afraid of it also. I don't think it looks that bad on many people who do have it, in fact some guys look really attractive even with lipo in my eyes, but when I think of what i personally can handle, I just don't feel strong enough to cope with that. I feel like some guy getting beat up by gangsters: "no, not in the face!... hit me in the liver, hit me in the heart, don't touch my face". I know this can be percieved as shallow and vain but this is my reality of what I really fear.

There are drugs less likely to cause it and since you are not resistent to anything (I assume) your doctor will be able to find a combo for you. Lipo doesn't happen overnight or so I am told so there is a chance to stop it before it gets too strong, and I am also very encounraged by the facial treatments available.

Regarding kidneys, I was told that this is monitored every time I see the doc, and when it becomes abnormal, they will change, and the damage is reversible. maybe they were sugarcoating reality, but thet's what they said.

regarding the bulimia, I know how addictive IDs are. I have a friend who is bullimic and 15 years poz and the effect of that on her health is devastating. I can't prove it but I don't think vomiting and losing all those minerals helps any with keeping lipo at bay. since you're putting toxins into your body you have to make sure that it's as balanced as possible and bulimia is devastating even without HIV.

Good luck with everything,

BT65 · « **Reply #8 on:** October 11, 2007, 06:00:35 am »

Jamie:

I just want to reiterate what Tim is saying. You obviously have some deep emotional stuff going on. You need a really good therapist, if you don't already have one. Bulimia can be and is fatal if not kept in remission. Please, please, get some help for this!

As for advice about meds, only you and your doctor can decide that. Just do your research, like your doctor said, and have some questions and interests when you go to your doctor. We're not qualified to give you a solid answer or make specific recommendations.

Please take care of yourself. Like the Damned One said, we're here for you.
Peace-
Betty

StrongGuy · « **Reply #9 on:** October 11, 2007, 07:34:59 am »

There are lots of good combos out there- if I was you I'd seek out a more knowledgeable medical professionsal (even post a question on "The Body" if necessary) who can weigh your history, risks of sides you are trying to avoid, and help map things out for you more thoroughly.

I do agree you should work on your bulimia issues foremost because you really need to make sure these meds are absorbed well and your physically nutrified (is that a word?) so that you can hang around for a long time and don't go screeching through your combo options super-quick. I know getting the bulimia issues is a tough ho as you've indicated in other threads, but it's an extremely important aspect that can further complicate your long-term health.

Good luck!

Iggy · « **Reply #10 on:** October 11, 2007, 09:48:37 am »

Quote from: Moffie65 on October 10, 2007, 11:52:32 pm

Jamie,

Are you actually serious here? I don't know anyone on these boards that would take the risk of actually fulfilling your request.
Can anyone recommend a combo for me?.

You need to take care of this I have a long history of Bulimia Nervosa, and Obsessive Compulsive Disorder , or else it won't matter how many combinations you go on, because your body will not tolerate this much messing with HIV medications. This is not a Cocktail Bar where you order the best tasting handfull of pills; you order the ones that are going to keep you alive, but you seem to have already set up the perameters for your Cocktail Quest. Not a good sign my friend, not a good sign.

Please take care of your important issues first and see if you might have many less problems with your HIV cocktail. We are talking life and death here, so now is probably your time to make the right choice.

Love,

worth repeating

penguin · « **Reply #11 on:** October 11, 2007, 10:11:25 am »

It is important, essential even, when thinking about combo to make choices which are right for you - and which take into consideration things like other health issues/medications, lifestyle etc etc. Having clearly thought out reasons why some drugs feel like better choices is not a bad thing at all.

What I see you doing, Jamie, is exactly this - thinking through the options which are available, which will best work with your current situation.

Issues like bulimia, ocd etc do not resolve overnight - and yes, clearly it is important to address these and acknowledge the impact they may have on your overall health and hiv treatment - & at the same time, you still need a combo which is effective & tolerable.

I pm’d you some thoughts on alternative nuke pairs etc, which may or may not be helpful to discuss with your dr. Choosing to replace truvada may mean you are able to use the higher dose reyataz without norvir boosting - this, plus option of using drug level monitoring, is something worth talking with your dr about too.

Kate

woodshere · « **Reply #12 on:** October 11, 2007, 11:06:07 am »

Quote from: StrongGuy on October 11, 2007, 07:34:59 am

There are lots of good combos out there- if I was you I'd seek out a more knowledgeable medical professionsal (even post a question on "The Body" if necessary) who can weigh your history, risks of sides you are trying to avoid, and help map things out for you more thoroughly.

And on "The Body" they are going to say the same thing Tim said, DISCUSS THIS WITH YOUR DR!!!

I think we all discuss treatment options and such with friends, as well as research our drugs. However in the end your combo needs to be decided between you and your doctor who knows ALL your medical history.

newt · « **Reply #13 on:** October 11, 2007, 12:35:15 pm »

Jamie I will PM you some suggestions, gonna be next week prob cos I am tucked up in Africa.

- matt

JamieD · « **Reply #14 on:** October 11, 2007, 01:46:53 pm »

MY DOCTOR TOLD ME TO RESEARCH IT AND WE WILL TALK ABOUT IT IN A MONTH. I AM TALKING WITH MY DOCTOR< BUT HE TOLD ME TO DO SOME RESEARCH.

Buckmark · « **Reply #15 on:** October 11, 2007, 01:56:16 pm »

Jamie,

I would not feel comfortable "recommending" a combo to anyone, as I'm not a doctor. Doing your own research is not a bad idea. Woods does point out in his post that it is somewhat natural for people to discuss various treatment options with others who are HIV+. You might gather some insight from this, but, what I've really learned is that even people taking the same medications can have widely different experiences. Ultimately, this is a decision that must be made between you and your doctor.

I, like others here, am also concerned about your bulimia -- particularly when it comes to meds. If you are not digesting food and absorbing nutrients properly and efficiently, it is rather likely that the meds won't work, and could lead to resistance. For example, some meds need to be take with food, and obviously it would be bad to purge within hours of taking your meds. I urge you to get help for your bulimia.

Regards,

Henry

StrongGuy · « **Reply #16 on:** October 11, 2007, 02:16:49 pm »

Jamie, I hear ya and speaking for my own statement above alone (which I realize wasn't very clear) was you may want to seek out a "more knowledgeable medical professional" meaning -- I'd look for another doctor for a second opinion (because if your doctor is telling to reseearch it without better guidance he might not be as knowledgeable as one would like). Just my thoughts because it's not prudent for lay people to recommend (with my own personal exception of Newt who I'd trust wholeheartedly.)

The doctors at The Body may be worth a shot to run it by them, though Woodshere makes a good point that they may just tell you they can't recommend without knowing more of your history so you may have to be very detailed. May be worth a shot.

Good luck and all my best to you working on the bulimia issues and choosing your meds...

JamieD · « **Reply #17 on:** October 11, 2007, 03:21:38 pm »

It's not about finding a new clinician/ ID doc. He is EXTREMELY knowledgeable, and he runs an HIV clinic in Baltimore. He is VERY knowledgeable.
The problem, I guess, is that I will not put anything in my mouth without researching it extensively first. My doctor has no problem working with me on my medications. He tells me I am one of the most intelligent patients he has, and that he can tell I am well researched.

I know everyone's experiences are different. All I was asking for was recommendations on combo's that have worked for people. I have NO resistance mutations so I could take anything from AZT to Ziagen. I know that no combo is 100% perfect, but there are certainly some that are better then others. There is nothing wrong with wanting to limit side effects.

As for my Bulimia.... like I said, I am getting help. 2 years ago I was bingeing and purging 4+ times a day, 7 days a week. I am not even doing it 7 times a week now. My medications are taken only once a day. I take them in the morning. I NEVER purge during the day, only at night when everyone is asleep. I AM GETTING HELP THOUGH. I have been working on this issue for a long time.

woodshere · « **Reply #18 on:** October 11, 2007, 04:03:01 pm »

Quote from: JamieD on October 11, 2007, 03:21:38 pm

The problem, I guess, is that I will not put anything in my mouth without researching it extensively first.

Gosh, wish that had been my policy with my mouth as well as my ass.

newt · « **Reply #19 on:** October 12, 2007, 03:09:29 am »

Quote

If you are not digesting food and absorbing nutrients properly and efficiently, it is rather likely that the meds won't work

Just to comment on this point, the nutritional requirements for meds to work are minimal, ie a baisc level of hydration and (not having mal-) nutrition.

Plus food, if needed, for the meds. For Reyataz this means a little food (perhaps as small as glass of milk or a Snickers bar or even a banana) to produce the acid environment needed to absorb the drug and with ritonavir boosting, a little fat for the same reason (like, a glass of milk << I mean a tumbler not a shot). That's all.

Nutrition for good health, different matter. Food to settle/reduce side effects, different and always more personal << if necessary.

- matt

AustinWesley · « **Reply #20 on:** October 12, 2007, 04:54:21 pm »

Hey Jamie,

I don't have an answer to your specific questions. Have you tried seeking out reputable eating disorder clinicians? I'm frankly appalled by some of the replies you've received, but just ignore them.

Matt has a great deal of knowledge and resources and minus the additional issues I would be able to direct you to some informative websites about the various combos out there.

Another suggestion that I can think of is to speak with a pharmacist about drug interactions. I know certain pharmacy chains have specialized pharmacists that deal specifically with HIV patients. I believe Walgreen's has a special hotline for people with HIV and other issues. I'll go back through some of my old info and see if I can find something more and if I hear of anything I will PM you.

I was wondering if this post might be better served or answered with a little more compassion if it was under the Mental Health category. I'm certain there are people who take lithium in there who might be able to share their experiences and you might want to consider a post there.

Wesley

Andy Velez · « **Reply #21 on:** October 12, 2007, 06:18:24 pm »

Jamie, you have some complex matters going. You say you have an excellent clinician and yet you are essentially trying to second and third guess him by looking elsewhere for answers.

You can only get the most accurate evaluation for your needs from your doctor by leveling with him totally about everything. He needs to know what's going on with you in your life physically. How else can he possibly make a treatment plan that makes sense for you.

All the experience and knowledge that might be useful to you here is potentially just more ammo for you to hesitate and vacillate. If you begin a treatment and give it a chance, you and your doctor can begin to get some idea about what might work for you and what doesn't.

This is tough stuff but it can be sorted out. There needs to be focus and working at getting things simpler so that you and your doc can begin to get clarity.

Keep us posted.

mike in VT · « **Reply #22 on:** October 12, 2007, 06:39:48 pm »

WOW I just got done reading all the posts here. I guess compassion and help are lost here. Save for the couple of you who do in fact offer advice on the issue. I am ashamed, to think that some of you people would treat a peresons request for help with such cruel comments. Didn't you ever hear "if you have nothing good to say than say nothing at all".

Jamie I am sorry that they have treated your request for help in such a manor. PM me and I will be happy to help you do some research. That way you won't have to deal with such hurtful comments.

Miss Philicia · « **Reply #23 on:** October 12, 2007, 06:41:24 pm »

Am I the only one who finds the term "AIDS face" offensive?

Matty the Damned · « **Reply #24 on:** October 12, 2007, 06:45:42 pm »

WOW I just got done reading all the posts here. I guess compassion and help are lost here. Save for the couple of you who do in fact offer advice on the issue. I am ashamed, to think that some of you people would treat a peresons request for help with such cruel comments. Didn't you ever hear "if you have nothing good to say than say nothing at all".

Jamie I am sorry that they have treated your request for help in such a manor. PM me and I will be happy to help you do some research. That way you won't have to deal with such hurtful comments.

You've posted three times and that qualifies you to judge us in terms of our compassion and help, does it?

Sweetheart, before you go pointing your elegantly manicured Finger of Judgment at the rest of us, maybe you should take the time to review the posting history of a few people in this thread. Not just Jamie, but some of the other long standing and highly respected people you've just seen fit to smear.

And whilst I'm about it, why don't you post an introduction thread telling us a bit about who you are. You know, so we can decide for ourselves if your views should be taken seriously.

MtD

mike in VT · « **Reply #25 on:** October 12, 2007, 07:14:53 pm »

You've posted three times and that qualifies you to judge us in terms of our compassion and help, does it?

No three posts does not, but living with HIV for 24 year sure does.

Sweetheart, before you go pointing your elegantly manicured Finger of Judgment at the rest of us...

I am not anyones sweetheart and I don't have an "elegantly manicured Finger of judgement" I have a vast amount of experience in dealing with people when it come to the subject of HIV.

I don't need you to validate me or my opinions. You are not so high and mighty so that I must seek your endorsement.

My lifetime of living with HIV gives me all I need.

Andy Velez · « **Reply #26 on:** October 12, 2007, 07:30:26 pm »

WHOOOOOOAAAAAA, Guys!

Before this spat goes one word further, back off and chill. Clearly some hackles have gotten raised but I don't want it to degenerate any further. Your comments have been duly noted. That's it. No more.

This thread is about Jamie and what he's asking. Please keep the focus on that. If you can help with that, great.

Thanks for your cooperation.

mike in VT · « **Reply #27 on:** October 15, 2007, 02:16:58 pm »

Hi again JamieD

Sorry for the above. Thank you Andy for getting us back on track.

Jamie

I think your ID Doc is doing a good job in suggesting that you be proactive in your treatment. I have always thought it best to research any meds that I am being put on and to evaluate the pro's and cons of them as well as the possible side effects of them. My ID Doc agrees with me on this and encourages me to do this. If I find my numbers are slipping or I seem to be having adverse reactions to my meds I research alternatives and bring them to her attention for discussion. Not because I feel she does not know what she is doing but because I feel better knowing that we have looked at all the options, and found the best course to follow.

I understand that you are working on the other issues you have mentioned and that is great. Keep up the good work. As some have said it is just not possible to tell you what will work for you and of course you know this. I don't know that I can offer any suggestions of meds to discuss with your doctor but I do enjoy a research challenge. So if you would like to PM me we can talk about what your hoping to find and to how best find options to discuss with your doctor.
Perhaps some one on here is well versed in upcoming or on going trails that may be worthy of discussing with your doctor.

I personally commend and encourage your research efforts. It is wise for you to know as much as you can about the meds your on and any possible alternatives that could be in the furture for you. Being proactive in your health care is the best thing you or any of us can do for our health.

My best wishes
Mike

newt · « **Reply #28 on:** October 15, 2007, 03:28:15 pm »

For the record, I noted my thoughts with Mr J privately including the following options for discussion (with supporting research links, caveats et al taking into account resistance profile, concerns on mitchondrial health, standard of care, other off-label approaches, concommitant lithum therapy, dosing schedule and some other things etc etc etc). I trust Jamie don't mind me repeating these here in summary:

Assuming a PI base of Reyataz:

with nukes...

A) Boosted Reyataz + Truvada (tenofovir + FTC), as now.
B) Boosted Reyataz + Epzicom (abacavir + 3TC).
C) Unboosted Reyataz + Epzicom.

without nukes or with one nuke only (AKA non-guideline compliant choices)...

A) Maraviroc and boosted Reyataz (+ either 3TC or abacavir).
B) Just use boosted Reyataz.

New drugs are coming, and in 3-5 years there will be more options that avoid nukes and are easy to take. So the choice now is for the next 3-5 years.

If people want some links/reference on nukes and mitchondrial toxicity please start a new thread and ask. Happy to post relevant material there.

- matt

Edited for missing 'u'

mike in VT · « **Reply #29 on:** October 15, 2007, 08:32:10 pm »

Hi Newt

Thank you for helping with this. I am very glad you could help Jamie.

Mike

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Author Topic: Can anyone recommend a combo for me? (Read 7941 times)