Start with Prezista, Norvir and Kivexa/Epzicom and Side Effects

[ehpich]

I was diagnosed at 5 years with 432 cd4. Until one week I had not done any tests and I'm not taking any HIV medication. My tests 1 week ago showed 12 cd4 and I prescribed a therapy Prezista (darunavir) + Norvir + Epzicom/Kivexa (abacavir and lamivudine). I started to take it and first day have no side effects.
My question is how many days or hours following initiation of this therapy is normally occur side effects and how long it is normal to calm down, there will be no side effects?
I want my doctor to prescribe Truvada, but he refused. Doctor said that Abacavir is better medcation. I dont believe so much. Please for any information.

[Ptrk3]

Firstly, I'm sorry to hear that you were not started on HIV medication several years back and that, if I'm reading you correctly, your CD4's dwindled to the very dangerous low level of 12, a number so low that you could be vulnerable for a number of aids-related opportunistic infections (OI's).

In addition to the medication you are finally on, you should also be on some prophylactic medications to guard against pneumocystis pneumonia and Mycobacterium avium complex (MAC).

Pertaining to your question, some people have side effects, most don't, so you may not have any side effects at all.  Time will tell. 

However, what's most important now is that you adhere to your antiretroviral medication to lower your viral load to undetectable (did your doctor tell you what your viral load is?) so that your CD4's can begin to recover to a safe level.  Your short-term CD4 goal should be to get above 200 as quickly as practicable, to put you out of danger for most OI's.

What's of next importance, is to get on the proper prophylactic medication to help guard against any aids-related opportunistic infections until your CD4 count is above 200.

[Jim Allen]

Welcome to the forum.

I agree with Patrick and can't add much to that.

I would not be waiting or concerning myself with side effects, most have none or one minor ones that pass as you adjust to the meds. Big side effect of kicking HIV backside with meds is you body will have the opportunity to recover

Now with such a low count you might, and this is a big might experience some Immune reconstitution inflammatory syndrome (IRIS) this can happen when the immune system begins to recover, it can respond to previously undetected infections. But sure like I said its a big if and i would not worry and if anything does pop-up treat and move on.

Anyhow be adherent to your meds and keep us posted on how you are doing.

Jim

[ehpich]

Thanks for answers !

More 3 questions:

There have no interactions between my regment and Fluconazole tablets and Nystatin tablets or oral suspension yes ?

Can I use bioresonance therapy (I mean Hulda Clarck, Rife) with HIV meds ?

What is better - to take all my meds in the same time (together) or in different time ?

[Jim Allen]

Hi

For interactions you can check drugs.com however you should always check with a qualified pharmacist.

Bioresonance, it simple does not treat HIV or affect HIV or HIV medication.
Not sure why you are using this pseudo-scientific treatment however the answer is no it does not affect your medical treatment

Take your meds as prescribed and live your life.

Jim 

[virgo313]

Hi,

Initially i was told to take Co-trimoxazole (Bactrim) in the morning.
& i am taking hiv med 2 tablet once a day at night.

I have ask Dr if i could teke them both at night & they say yes.
I find it more easy to take all together at same time (at night).

Thanks

[mecch]

ehpich - welcome here.   You are in a serious condition so please take your treatment.   

If you ever want to talk about why you did not treat for 5 years, I would be curious to know.  If you care to talk, that is.

[ehpich]

Hi again.
First of all sorry for my bad english.

Why 5 years with no medication....First, because when I was diagnosed had a requirement to initiate treatment in cd4 under 200, and I had 432 and doctor say me - you can not start (in my domestic country hiv med is free, no payment or healt insurance needed). I read a lot for a very bad side effect of hiv med and I find a lot of info in internet about the alternative medicine without side effect (especially beioresonance). I try it and they work perfect, but take a lot of time (4-5 hours every day + time breaks = busy 5-6 hours every day. I change my domestic country with other and have no time every day to take bioresonance and I stop it for arround 6 months. When I try it again after 6 months - dont work for hiv any more. In new country I ask for test and hiv meds but work without health insurance and here hiv med are to expencive (arround 2500 eur/month + arround 1200 eur tests), test and everything must be pay also. And I wait to come back for holidays in my domestic country and take everything for free. And all this 5 years I feel good. Some cold or bronchitis --> bioresonanche for 1 hour and all is ok (5 years I dont use any antibiotic). Last 2 monts I take aspirin or fluconazole or nystatin oral time by time because of candida in intestines and thats all.
Before arroud 10 days result from tests are 12 CD4 and my doc say me to start this combination because of little CD4 and it's powerfull for fast CD4 improving, VL down and unknown mutation (I am HLA negative). And today is my second day on hiv meds and have no side effects.
I ask about the bioresonance and hiv med effect because I found bad effect in one frequency when I take fluconazole. I believe in bioresonance because of my experience and experience of my family and my friends.
Why 5 years without hiv med = because I feel good and I dont believe I have so little cd4. Today I feel good too (healthy).
I am scared of side effects, written for abacavir, because I ask.
I dont want to stop my hiv med, but want to use bioresonance time by time if i have bronchitis, cold or something other, because I aks can bioresonance harm hiv meds.

[Jim Allen]

Hi

Look nothing, and i mean nothing on this earth treats HIV except for HIV medication.

You numbers are not in the hole because of stopping bioresonance for a few months, its because you did not treat your HIV to start with for years and that allowed it to do damage to your immune system.

I wish you all the best and you are welcome here however do not post about bioresonance or any other unproven treatment for HIV again. Its nonsense we do not allow it here. Thank you.

As for side affects, they are minimal and rare, so stop worrying and take your meds. Again you are welcome here and i wish you all the best.

Jim

[virgo313]

Hi ehpich,

I was feeling good also last year (3rd quarter)
And by late Aug, my face was swallon & KS start to appear (fast).
Best to describe --> https://aidsrestherapy.biomedcentral.com/articles/10.1186/1742-6405-5-2
I was very lucky & was able to get immediate care. As you can read from link, some did not make it as they do not want to take meds.

Now i am feeling better & CD4 increase already.
I would advise that not to worry about some "side effect" (if any). More important is to "improve the immune system" first.

I feel itchy from time to time, but just have to bear for a while.
I wish your CD4 start to increase soon. Thanks

[ehpich]

Before I start taking HAART i sleep 8-10 hours deep sleep (as in all my life). Now i sleep 2-3-4 hourst and wake up little sweaty, drink more water and for a few hours come little white spots on throat and after that disappear. The other thing I noticed is that I trembled slightly fingers several times a day for a short time. Except that I feel good.
   

[Jim Allen]

The sleep thing is common and will settle down  Also glad to hear you are feeling fine.

The white spots are not HIV med related, if it continues to trouble you report it to the doc.

Jim

[ehpich]

Thank you Jim !
I think white spots are Candida and must take Fluconazole

[virgo313]

Hi ehpich,

I had difficuly sleeping too when first started taking meds.
So, i will start doing house chores in middle of the night until tired and sleep.
Now, will sleep through without any vivid dreams..
Hang in there.. you will feel better very soon. Thanks 

[ehpich]

Hi again !

Is it normal to have a sense of metallic smell in the nose and in the mouth and one red spot circa 5 mm on my gum over the tooth (smooth, even, without itching) and the same 2 spots on my right arm ? No more spots on all of my body.

[Jim Allen]

Do you or perhaps more to the point why do you think its HIV or HIV med related?

I don't think you spots are related to either BTW, but that's me and all i can recommend is to see a doctor if your concerned so they can treat it.

Jim

[ehpich]

Ok, Jim !
Lets to see what happen in the next hours/days. Here is difficult with docs on the weekend. For the first time from starting the hiv meds i eat eggs tonight and its possible to come from that.
What about the metal feeling ?

[Jim Allen]

Eggs .. Why are you known to be allergic to eggs ? If so than yeah I would think it would be very possible, but an egg allergy or reaction would not be related to HIV status. 

Generally ill be honest and no disrespect intended but starting meds people think every bump, sniffle, or soreness is related to HIV or HIV meds, in reality people are humans and humans get sick, and even the ones who think. I never got sick before, yes they did they just did not focus as much on it. This settles with time as they focus less on it. That is my experience.

Now if you have a "rash" the rule of thumb is see a doctor. Nobody can tell you what it is online, a rash could be nothing at all or it could be something that needs attention. Who knows ... As for the taste, well taste abnormalities I've heard that before but its not necessarily the case or related and if it is it should pass but do bring it up with the doc if you see one for the red spots. 

Jim

[ehpich]

For the first time I hear about that thumb rash rule. It is good to know it. Thank you.
About to start the hiv treatment - when you have 12 CD4 and read about the very bad possible side effects - I think is normal to be a little bit more nervous and to look for a possible side effects and to be a little bit scared.

[harleymc]

So you have 12 cd4s, the biggest side effect you should be worrying about is the side effect of not taking medications.

AIDS is a pretty sh!tty way to die, but if you think that's preferable to taking pills.
No one here is going to force you.

[ehpich]

I just ask about the red spots.
Of course I don't plane to stop my hiv pills.
The forum is to ask and to learn/know

[mecch]

ehpich - the things you report here about some countries' HIV treatment protocols and the access to treatment, it is angering and tragic. 
I guess you realise now that you will have to plan on being in the place where you will from now on always have access to treatment.

I wanted to say something about the pricing. In your "domestic country" you say HIV treatment is free.  And where you were working for several years. Access to treatment was limited to you to the market - you would have had to buy it at the developed world  price of thousands a month.

I just wanted to says, that is from the perspective of the individual with HIV, of course. Medicine isn't "free" anywhere.  Your government is paying for it, and/or paying and combining that with foreign assistance for paying/access, and then passing it on for free.

My medicine here in switzerland is 2000 euros a month but of course NOBODY is paying that. Nobody has that kind of money. The insurance pays. Every swiss person must have insurance, and if one is too poor for the monthly, premium, the government helps.

In a country like UK - the UK is paying developed world prices for the drugs, but a brit individual with HIV is not paying it directly, because the NHS means universal medical care. 

I guess I want to say, I think nowadays, there is a work-around in most countries, where a person with HIV who is dedicated to getting on and staying on treatment, can find a way and can afford it.  But its easier for an HIV+ person in some countries and more difficult in others.   But it is UNIVERSALLY hard all around the world, for many people to arrange the finances and lifeslyle and mental adjustments to get on and stick to treatment no matter what.  So you are not alone.

You have to plan to stick on HIV meds now forever....   Until the hazy distant unsure day we can ALL stop.... 

And as you know, there is stigma about HIV as an sexual disease and HIV as a disease for gays or immoral people, and this is in many countries.  There are lots of ways that the mentality in power in a country can discourage access to medical care and good medical care, and its not hard to say, sometimes its on purpose, a kind of punishment. The mentality in a  culture can also contribute to the spreading of HIV because people don't get test and don't get treated. For a number of years, we have known about "treatment as prevention" - that means, if the world could test most people for HIV and treat them, HIV transmission would be cut way way down. What's preventing this public health measure?  Money, morality, politics. Its infuriating on so many levels.

HIV+ people must NOT EVER let the prejudice and stigma that is in society, and that hurts us, must not let that mentality win. It already hurt you badly.  The 200 CD4 level, for treatment, was very low 5 years ago. The inaccess to treatment where you were working abroad, was also in a way, a denial of your human right to medical care. 

HIV treatment is VERY routine if the person is not in AIDS numbers. Do not be a victim again. Do not slip through the cracks. There are people/organisations in this world who treat HIV+ people as second class citizens or even prefer us to "go away".  Do not internalise that.

Now, a second issue I wanted to give some information:  when I seroconverted, (they found the HIV infection before I had antibodies - so a week or two after infection) I had a bad reaction to the HIV virus. I didn't have the normal Viral load curve. My VL started in millions and stayed there month after month and was going up.  Finally after about 4 months, I started my treatment. 

It took me about 1 year of lots of little things going on in my body before I could say I felt completely neutral about the medicine - didn't feel like anything bad going on in my body was because of HIV medicine.

Within 1 week of starting HIV medicine, I COULD feel many GOOD things it was doing for my body. I could literally feel the difference as it cut down my VL.

This is what my doctor told me to do for that first year.  He said, get small NOTEBOOK and to write down things I though were "side effects".  He said writing it down, would help get it off my mind.  That's important - to free up the mind from being preoccupied by HIV infection.  He said he would look at the list each time we saw each other.  Well when he saw my first list, it was obvious that MOST of what I had written down was completely harmless and not to be worried about and many of the things had passed already. 

But anyway, I would say the thing to do is to keep busy on your normal routine of life, and limit how much mental energy you will give to HIV everyday.  It really takes a while both physically and mentally. Physically, its going to take a time for your body to repair.  Mentally, its going to be a while for you to chill out about being on some treatment forever, and to make whatever adjustments you need to "realise" you have HIV and to "live with HIV". 

Thinking I "feel great" I "feel healthy" is a huge advantage you have, so concentrate on that. BUT you must never make the mistake that "feeling great" means you don't really have a very serious disease.  The drugs are going to push the infection way down, but you will always have the HIV and you will always be treating it. That is where we are.

I go 2 times a year to the HIV doctor now. I feel healthy but I have HIV and take drugs everyday and HE tells me how it is going and whats new for treatment and research, etc etc, and in between I get on with my life as normal.  I come here to help out a bit - hopefully to pass messages like I did above to someone like you, so you can live well with HIV too.

[harleymc]

You have red spots, but instead of asking your doctor you try a bit of magical thinking that someone from the internet with no medical training can diagnose 'red spots'.
Your magical thinking goes further, may be its 'because I ate eggs', never once does it enter your 'reality' that it might be because you've been in denial for 5 years and let yourself develop AIDS.

Lets get this straight. You found out 5 years ago that you have HIV, but you didn't get your immune system monitored on a regular basis. What was supposed to happen? The HIV was going to go away? That is denial and it is something you are still doing.

Talk to your doctor about the rash.

[ehpich]

Thank you for the answer.
I work in Germany, but without insurance and cant have pills for free (or if you know how to have it without insurance in Germany - please say me and where in European Union). I must change my work and have insurance in the future (maybe leave Germany too), but that is in the near future.
About the Red spots - they are left after 2 hours and don't come back.
But when I take my pills come acide in stomach and a little bit pain in my legs - the front part of finger and cushion of the steps. I drink 1 fanta and pain go out. Is it possible hiv med to make acides/acidosys or what can be that without rash ?

[Jim Allen]

I don't think you spots are related to either BTW, but that's me and all i can recommend is to see a doctor if your concerned so they can treat it.

Now if you have a "rash" the rule of thumb is see a doctor. Nobody can tell you what it is online, a rash could be nothing at all or it could be something that needs attention. Who knows ...

The white spots are not HIV med related, if it continues to trouble you report it to the doc.

Dude now its not white spots in the mouth it red spots and also acid and pain in your legs and now a part of your finger ....

Look I've told you not to overly focus on stuff and that if you are sick with every post I've told you to see the doctor, as i explained nobody is going to tell you what it is online.

Insurance or not if you really are sick than you need to go to a doctor.

Jim

[ehpich]

harleymc, I dont understand why you write me not frendly and you're angry.
I say clare, that I go immediately to the clinic after I understud I am pozitive. They do it blood test and say me I have 432 CD4s. I ask and want to start treatment immediately, but they say me - you can't because you have more then 200 CD4s and they give medicine when cd4 go less than 200 cd4. And doc say me - what you think that HIV meds are Raffaello ? HIV pills make a lot of very dangerous desasters.  After that I go to work in Germany and in Germany without insurance is very expencive and I think - have no problem, I will take the test when i come back for holidays in my domestic country. I try alternative metods and feel ok all the time. And you can understand when I feel good I dont think every day for hiv etc. Today, tommorow....5 years. And when I come I go to clinic and they say me - you have 12 cd4s and I start pills immediately (before 6 days)

[virgo313]

Hi ehpich,

Sometimes we sound "angry" because we really care.
Many of us have been through "very thought period" & seen how other suffer from low CD4. Believe me when i say we are more worry then we are angry at you.

I think we understand why you are thinking a lot on "side effects".
But, look.. you should be just thinking of "12" (CD4) right now.
& also most important that you just need to know you will be fine by just taking the med daily. That's all you need to put in your thoughts.

I can write a lot what i have been through during my first few month when starting meds & chemo. Things i feel "different" (like a hard lump on my testicles). But I waited for time for my next appointment before i worry too much.
so, please bear with yourself for a while. You will be better as you have started meds.

Angry, we are not. Frustrating to know why someone start treatment late, maybe.... And that's is because we care & have a heart to love others... Thanks.   

 

[mecch]

ehpich - when you are in germany, or before your next stay there, you are going to have to be active and figure out what is and is not available to you.
There are plenty of HIV/AIDS support and information resources in Germany.
The private insurance companies will not take you but I think one or all of the state - statutory systems MUST take you.

As I said in my long post above, you are going to have to FIGHT to live well with HIV.  You cannot be passive about this and fatalistic. (You were and your immune system was destroyed.) 

Yes, the world has made it shitty and hard especially for someone in your situation - in between resource rich and resource poor living locations.  But don't be a victim of that.

http://www.thebody.com/index/whatis/demo_germany.html

Germany is letting in a million refugees a year, lately. They can't possible decide that none of these people who are HIV+ will have NO ACCESS to treatment. 

The rules are probably very slippery and you will have to check with local agencies about how it might be possible to get what you need. And lord forbid, if it is total refusal, it is back to the guideline - you HAVE to live in a place now where you can have meds. No gaps in treatment.

[harleymc]

I am not angry, but it is not my role to support you in making poor decisions. If that doesn't sound friendly to you I'm sorry. This forum is not a substitute for face to face healthcare from a doctor.

 I wish you luck and I hope you will start to be proactive in chasing the best healthcare that you can get.

[ehpich]

First side effects from the therapy: Night sweating on the neck, fever 38.8 oC/101.84 oF, slightly wobble of the fingers from time to time. Doctor say everything is ok, maybe IRIS.
How long will this night sweats and what it depends - on the level of viral load or ?
Before start HIV meds i feel health and good, after start HIV meds I feel a little bit sick. Is it possible from meds, especially Abacavir ?

[Ptrk3]

It could be a results of any number of things or a combination of them.  It could be Immune Reconstitution Inflammatory Syndrome (IRIS), as your doctor speculates, since your CD4's were so low, and/or it could be side effects from the medication.  Side effects often go away after a short period of time.

In any event, you must persevere, since you are now on lifesaving medication that is fighting the replication of the HIV in your body.  You are now on the road back to health, lowering the viral load, which, in turn, will allow your CD4's to rise.  Regardless of how you temporarily may feel, you are healthier today than you were before you started your antiretroviral regimen.

[ehpich]

Thanks for the advice and support !

[ehpich]

And what about Colostrum - is good idea to use it ?

[virgo313]

Hi ehpich,

Looks like you are still "checking on possible" other "meds"
Understand that you are eager to increase your CD4,
Also know that you will be taking HIV med daily
If you would like to take "additional supplements", suggest to check with your Dr first.

Just worried that too much reading from internet would "cloud" your mind.

Rule of Thumb now:-
a) Continue taking meds
b) Anything you like to take (additional) - Consult your Dr
c) Anything you think it is side effect - Consult your Dr

I mean, looking at the trend of post, i don't think you have fully "cool down" from worrying. Just worry if more info is discuss here you will get more "false hope".

I think best advise will still be from asking your Dr. Thanks   

[ehpich]

28 days later after med start CD4 are:

18.10.2016 -  12
16.11.2016 - 172

Perfect ! But have still night swearings.

[Jim Allen]

Great news, excellent. No VL done yet?

Good results and dd you mention the night sweats to the doc?
I suspect it may take some time for it to settle.

Jim

[ehpich]

Labor (only one in my country) have no viral loads kits to do the tests and....have no info about VL.
Doctor say: maybe that is IRIS and till 400-500 cd4 you can have sweerings because of low start cells.

[Tonny2]

        OJO     HELLO THERE...GOOD NUMBERS, I'M ALSO TAKING PREZISTA/NORVIR...ARE YOU UD?...NOT A DOSTOR BUT YOU ARE HAVING A BIG BATTLE INSIDE YOUR BODY, THAT MIGHT BE THE READON OF YOUR NIGHT SWEATS...PLEASE CONTACT YOUR DOCTOR...I REMEMBER HAVING THOSE, A LONG TIME AGO, FORTUNATLY, I KNOW WHAT IT FEELS LIKE, HANG IN THERE, IT WILL GET BETTER....BEST WISHES...HUGS                                                                    OJO

[ehpich]

I dont know my viral load (labor have no kits to do VL tests).
But I think is not possible to be undetectible 2 months after starting HIV meds for the first time and with 12 cd4 cells and with IRIS. Its to early I think.
I had only intestinal candida without any other symptoms before starting the medication. After 14 days on fluconazole candida gone but I take fluconazole 200 mg once ot twice weekly for prevention. Doctor say - with your cd4 counter you are very very lucky man to have no other opportunistic infections and no side effects of meds. Only night sweats of IRIS 2-3 times at night and time by time pharingitis and doc said thats normal reaction, dont worry. Dont take any other meds, no vitamins. Only omeprazol, aspirin or ibuprofen. And in any case no antibiotics before 500-600 cd4.
Before have HIV i was 71 kg, 5 years later before starting HIV meds I was 68 kg, now 2 monts later I am 72 kg.
I am also surprised by the result. I expected things to develop much worse.

[CaveyUK]

Sounds like you are doing fine. The jump in your CD4 shows that the virus is being suppressed well and allowing the body to build your immune system. From such a low start, it can often be a long and drawn out journey to get out of the <200 'danger' zone, but you are almost there already. This is all great news!

Now whilst I am sure you are fully focused after your 5yr passive wait to engage with treatment, which could have cost you your life, there is something I really want you to remember and keep at the top of your mind....

Once you are Undetectable and have a CD4 range in the 'normal' range, which judging by your progress won't be too far away, you really really really really need to keep taking the treatment EVERY day and make sure you have regular clinic follow ups to ensure your VL remains UD. Don't think you feel fine and the numbers are all good so you can go on a treatment holiday or that you can use some wacky alternative treatment.... You need to be in it for the long haul now. Taking your meds will get and keep you healthy and allow you to enjoy a long life, but failing to adhere to the meds will see your immune system crash and there is no reason to assume you will be as lucky next time to catch it in time and recover quickly. So please, take the pills religiously, every day and don't get complacent about HIV again. Ever.

Ok, sermon over....

I am a little concerned with not having easy access to VL tests though. As I say above, the key thing is getting UD and staying there. Without regular VL tests you won't know this. Please talk to your doctor about this....you MUST get VL checked regularly to make sure the meds are working properly and keep working. CD4's are important now, as you are < 200 but these will become less important in the future. Viral Load is the critical thing to know.

All the best

[ehpich]

I am seriose and will take my meds every day in the right hour.
About VL kits - I think the same, but....here my meds are cost-free and without condition for health insurance. I think thats more important today for me.
My doc said - on the end of year have no enought funds/money for VL kits and meds are more important than VL kits. I dont know what can I do if tommorow they have no funds for meds too. I can not pay every month 2500 eur for this meds combination.....but will see....;p
Now I asked a few labors in Germany how mutch will cost to do VL tests for private and if I can - to do the VL test in Germany and hav my results immediately (after 4-5 days).
With period of time should be doing this VL test to be sure everything will be on the control and dont late ? My doc said on every 6 month, but I think is to long time if VL increase.
And thank you for your concern and support.

[Jim Allen]

Look it can vary when someone gets VL testing done, including the time in-between and per patient.

However the WHO recommends for clinical monitoring every 6-12 months, where available.  Where viral load monitoring is unavailable, clinical monitoring and CD4 monitoring are recommended. (2013 clinical guidelines)

Now I agree with CaveyUK that getting your VL checked would be something I would be looking into if I was you.

Have you contacted any of the German ASO's for support already?

Jim

References:

http://apps.who.int/iris/bitstream/10665/208825/1/9789241549684_eng.pdf?ua=1

Monitoring the response to ART and diagnosing treatment failure
Laboratory monitoring before and after initiating ART

Routine viral load monitoring can be carried out at 6 months, at 12 months and then every 12 months thereafter if the patient is stable on ART to synchronize with routine monitoring and evaluation reporting (conditional recommendation, very low-quality evidence).

In settings where routine viral load monitoring is available, CD4 cell count monitoring can be stopped in individuals who are stable on ART and virally suppressed2  (conditional recommendation, low-quality evidence).

http://www.who.int/hiv/pub/guidelines/arv2013/art/artmonitoring/en/index3.html

Where viral load monitoring is unavailable, clinical monitoring and CD4 monitoring are recommended (205). Although a systematic review of two randomized controlled trials (184,206) provide moderate-quality evidence of mortality and morbidity benefits with CD4 and clinical monitoring compared with routine clinical monitoring in adults receiving ART, these trials largely focused on CD4 and clinical monitoring in people who initiated ART at CD4 counts below 200 cells/mm3 (Web Annex). Existing immunological and clinical criteria may have decreased sensitivity and specificity to detect treatment failure in people who initiate ART at higher CD4 counts, and more accurate immunological criteria for these people remain to be identified.

Routine versus targeted viral load monitoring to detect treatment failure

Viral load should be monitored routinely (every 6–12 months) to enable treatment failure to be detected earlier and more accurately. In settings with limited access to viral load testing, a targeted viral load strategy to confirm failure suspected based on immunological or clinical criteria (Table 7.14) should be used to avoid unnecessary switching to second-line ART. Targeted viral load monitoring is less costly than routine viral load testing, but as with clinical and immunological monitoring, has the potential to delay switching to second-line ART and may subsequently increase the risk of disease progression, selection of ARV drug resistance and HIV transmission.

[Tonny2]

I am seriose and will take my meds every day in the right hour.
About VL kits - I think the same, but....here my meds are cost-free and without condition for health insurance. I think thats more important today for me.
My doc said - on the end of year have no enought funds/money for VL kits and meds are more important than VL kits. I dont know what can I do if tommorow they have no funds for meds too. I can not pay every month 2500 eur for this meds combination.....but will see....;p
Now I asked a few labors in Germany how mutch will cost to do VL tests for private and if I can - to do the VL test in Germany and hav my results immediately (after 4-5 days).
With period of time should be doing this VL test to be sure everything will be on the control and dont late ? My doc said on every 6 month, but I think is to long time if VL increase.
And thank you for your concern and support.

        OJO      HELLO....I HAVEN'T READ THE REPLIES, I'M NOT SURE YOU ARE UD, BUT IF YOU ALREADY ARE, DON'T WORRY ABOUT HAVING A VL DONE EVERY SIX MONTHS, YOU WON'T HAVE PROBLEMS FOR A WHILE, I'VE BEEN ON THE SAME COMBO FOR 10 YEARS (JANUARY), STILL UD, I DO MY VL EBERY SIX MONTHS OR WHENEVER I WANT TO DO IT, MY CD4-624, SO, I'M NOT WORRY ABOUT VL NOW...PLEASE DO NOT WORRY ABOUT ANYTHING UNTIL YOU HAVE SOMETHING TO WORRY ABOUT, IF YOU WERE TO LOSE MEDS COVERAGE, THEN YOU WORRY, NOW, PLEASE, JUST FOCUS IN THE PRESENT, TRY TO LIVE STRSS FREE, YOU WILL BE FINE...I THINK YOU NEED A HUG RIGHT NOW, HERE IT GOES, A BIG BEAR HUG ON YOUR WAY...YOU ARE IN A GOOD COMBO, I'VE BEEN TAKING PREZISTA/NORVIR FOR TEN YEARS, SO, YOU MIGHT BE UD FOR AY LEAST TEN YEARS,,,MORE HUGS AND KEEP US POSTED                                                               OJO

[ehpich]

No, I dont checked German ASO's till now.
I must search for ASO's, but till now I dont have info about that. If you know someone....
I asked/writed emails direct to 3 labors, but still have no answers.

And thanks for support !!!

[ehpich]

        OJO      HELLO....I HAVEN'T READ THE REPLIES, I'M NOT SURE YOU ARE UD, BUT IF YOU ALREADY ARE, DON'T WORRY ABOUT HAVING A VL DONE EVERY SIX MONTHS, YOU WON'T HAVE PROBLEMS FOR A WHILE, I'VE BEEN ON THE SAME COMBO FOR 10 YEARS (JANUARY), STILL UD, I DO MY VL EBERY SIX MONTHS OR WHENEVER I WANT TO DO IT, MY CD4-624, SO, I'M NOT WORRY ABOUT VL NOW...PLEASE DO NOT WORRY ABOUT ANYTHING UNTIL YOU HAVE SOMETHING TO WORRY ABOUT, IF YOU WERE TO LOSE MEDS COVERAGE, THEN YOU WORRY, NOW, PLEASE, JUST FOCUS IN THE PRESENT, TRY TO LIVE STRSS FREE, YOU WILL BE FINE...I THINK YOU NEED A HUG RIGHT NOW, HERE IT GOES, A BIG BEAR HUG ON YOUR WAY...YOU ARE IN A GOOD COMBO, I'VE BEEN TAKING PREZISTA/NORVIR FOR TEN YEARS, SO, YOU MIGHT BE UD FOR AY LEAST TEN YEARS,,,MORE HUGS AND KEEP US POSTED                                                               OJO

Thanks for hugs. Frendly hugs to you too !!!
My doc said after 2 years will be better to change Prezista with Issentres. I dont know why. Sounds stuped if Prezista still worked ok. But now is to early to think about that.

[Jim Allen]

Well this would be a starting point I think.

ASO
https://www.aidshilfe.de/

They also have anomous contact options (You may want a German speaker to help you)

https://aidshilfe-beratung.de/e-mailberatung.html

List per town and other ASO's contacts and resources
https://www.aidshilfe.de/adressen

Jim

[ehpich]

Well this would be a starting point I think.

ASO
https://www.aidshilfe.de/

They also have anomous contact options (You may want a German speaker to help you)

https://aidshilfe-beratung.de/e-mailberatung.html

List per town and other ASO's contacts and resources
https://www.aidshilfe.de/adressen

Jim

Jim, I live in Germany now and speak not bad german. That will be not a problem. I speak bad english and fluent russian too. But have no insurance here (here insurance is to expencive for me - arround 540 eur/month). German AIDS Help do nothing, only info and a lot of blablabla and statistics said one my colleague.

[Jim Allen]

Jim, I live in Germany now and speak not bad german. That will be not a problem. I speak bad english and fluent russian too. But have no insurance here (here insurance is to expencive for me - arround 540 eur/month). German AIDS Help do nothing, only info and a lot of blablabla and statistics said one my colleague.

Said one of your colleagues ...

 Contact the ASO yourself and explain your situation and see if they can help or point you towards a better solution. Its too easy to sit back and say it will not work or help without trying.

Jim

[ehpich]

Ok, Jim !

[ehpich]

I got a rash (2.5 month after the start of medication), dark urine and from 37.3 to 37.6 degrees Celsius and my doctor stopped my Kiveksa (abacavir + lamivudine),  suggesting that the side effects of it. Side effects decreased, but still have them. Is this normal side effects of protease inhibitors as darunavir (Prezista) ?
According to my doctor and consultation with a second doctor - the only way to know whether the side effects and toxicity of a drug like stop this medicine for a minimum 5 days. To me this sounds silly - to stop a drug and waiting to see whats going on. My doctor stop my Kivexa still 14 days and change it with Truvada. Is there not a problem of resistance when taking only Prezista+Norvir booster for 14 days ?!?! He think now (3 month after the start of medication) to change or not Prezista with Issentres in the next weeks. He think now I have more than 500 CD4 cells (if I increase 160 CD4 for 1 month) and have no risk to change meds. Is that normal and the right solution to change so early the all of first started medicine ?

P.S. About the ASO - I pay to doctor for consultation, but little than normal price with no test. Doc say - better in the future to test my urea. Blah-blah-blah. I'm not his temporary paient :-)))))) Germany.....for everyone....but on paper only :-)))))) My first doc say - have no logic in 3rd month (too late) to increase urea and if urea is high also must change meds.

[ehpich]

And ... 1/2 month I dont have night sweats any more.
And for 3 monts - my wight is 4 kg more (71,6 kg) - my wight in all my life.
After stopping of Kivexa - I have no more little fever/temperatur, Urine is not dark but still have rash ot the body (first back, then on the arms and disappeared from the back, now in front and shoulders). My doc think- atopic dermatitis (I have the most difficult to accurately diagnose rash say doc).
Now I have slightly enlarged lymph node in the neck in front and for a 5 days inflamation of wrist and for a 4 days before - on ankle legs. :-)

At all - with my 12 cd4 before starting meds - I feel better :-) but...maybe my first med mix are good for a 3 monts and not my right meds for a long time

[Jim Allen]

Well look I can't give you medical advice but sure a rash can happen for any number of reasons, it can be a reaction to just about anything.

So yes it can be a reaction to meds. I personally have this reaction to number of medications however its never been a big issue, don't get me wrong I hate rashes as they itch and make me feel ugly. Anyhow good news is they do go away with care and taking away the suspected cause as you doctor suggests and seeing if it subsides sounds pretty normal to me, had this a number of times with other meds over the years to try and determine what med is causing the rash.

Last time I was taken off nothing changed and it turned out to be caused my a pain treatment i was on and not the HIV meds.

At all - with my 12 cd4 before starting meds - I feel better :-) but...maybe my first med mix are good for a 3 monts and not my right meds for a long time

Well I am glad that with treatment you feeling generally better would not expect anything else, but yes sometimes you need to find the right combination of meds for you and that might mean a switch.

My first doc say - have no logic in 3rd month (too late) to increase urea and if urea is high also must change meds.

Sorry did you have a blood urea nitrogen (BUN) test done?

Look if your results are high it could be for a number of reasons best t work with the doctor and if the medication is a factor that yes you may need to switch to the right combination of meds for you.

All in all best to work with the doc and wishing you all the best and hope the rash is gone soon.

Jim

[ehpich]

Thanks, Jim !
Will see.....what going on with my rash (1 full month i have it till today).
I dont want to change darunavir (Prezista) because of perfect results, but....will see...

[Jim Allen]

Well if does turn out that you are having a sensitive reaction that it is far from perfect for you.

Look millions of people take Truvada or did take it with no issues, unfortunately it did not suit me and I had a horrible time, so I switched problem solved. Sometimes it happens that you need to switch for whatever reason. Try not to stress it too much and look on the bright side, you have options to switch and that is good news.

Jim

[Tonny2]

         ojo       HELLO THERE....I TAKE PREZISTA/NORVIR (TEN YEARS ON), NEVER HAD A RASH...ARE YOU TAKING ANTIBIOTICS TO PREVENT INFECTIONS?...IF YOU ARE DOING IT AND YOU ARE EXPOSE FOR LONG PERIODS OF TIME TO THE SUN, YOU WILL GET A RASH, ...HAVE YOU SEN A DERMATOLOGIST?..LIKE JIM SAID, FORTUNALLY FOR YOU, YOU HAVE OPTIONS TO SWITCH MEDS, THEY ARE OTHERS WHO DON'T HAVE THAT CHANCE AND HAVE TO DEAL WITH SIDE EFFECTS...WISHING YOU THE BEST...NOT A DOCTOR, JUST SHARING EXPERIENCES, BY THE WAY, WERE YOU CHECKED  FOR ALLERGIES BEFORE STARTING ABACAVIR?...HUGS              ojo 

[ehpich]

Thank you for support and help.
After consulting professor at Berlin clinic for severe HIV infection is established that this rash that I have is very rare of Prezista (especially in combination with abacavir) and it is not atopic dermatitis.
Rash (more than 1 month) and dark urine - my doc change my meds. Now I start to take Tivicay+Truvada. Will see whats going on. Here have no Descovy at the moment.
About antibiotics - I take co-trimoxasole 480 or 960 mg (some days 1 pill - 480 mg, some days 2 pills - 960 mg) + Herbal Sibylum Marianum (salimarin - to protect liver) + Fluconazole 200 mg. (1 or 2 times - of my choice - pro week).

P.S. Tonny2: Yes, my test for HLA is negative.
P.S.S. After discussion all doctor think dark urine is from abacavir, rash is from Prezista. And must change the both. First I stop Epzicom/Kivexa and urine is normalised, after 10 days - I start Truvada, after 3 days I stop Prezista and today (after 7 days) I start Tivicay. Still have rash, but little and have no itch. Docs says - must wait min 1 month to full clean body from Prezista and than rash must go out.

[Tonny2]

Thank you for support and help.
After consulting professor at Berlin clinic for severe HIV infection is established that this rash that I have is very rare of Prezista (especially in combination with abacavir) and it is not atopic dermatitis.
Rash (more than 1 month) and dark urine - my doc change my meds. Now I start to take Tivicay+Truvada. Will see whats going on. Here have no Descovy at the moment.
About antibiotics - I take co-trimoxasole 480 or 960 mg (some days 1 pill - 480 mg, some days 2 pills - 960 mg) + Herbal Sibylum Marianum (salimarin - to protect liver) + Fluconazole 200 mg. (1 or 2 times - of my choice - pro week).

P.S. Tonny2: Yes, my test for HLA is negative.
P.S.S. After discussion all doctor think dark urine is from abacavir, rash is from Prezista. And must change the both. First I stop Epzicom/Kivexa and urine is normalised, after 10 days - I start Truvada, after 3 days I stop Prezista and today (after 7 days) I start Tivicay. Still have rash, but little and have no itch. Docs says - must wait min 1 month to full clean body from Prezista and than rash must go out.

         OJO        HELLO THERE, I'M GLAD YOUR DOCTOR SOLVED THE PROBLEM, I HOPE YOU FEEL BETTER SOON...PLEASE TAKE CARE OF YOURSELF...DOES YOUR DOCTOR KKNOW ABOUT THE SUPLEMENTS YOU TAKE?

[ehpich]

Hi, Tonny2 !
Yes, of cource ! My doc recommended me salimaryn also, because of liver/kidney potential damages of all hiv meds. There have a lot of univercity studies about salimaryn protection function. If you take it 6 hours after your hiv meds (better, no "must") all is ok.
My doc think better don't take co-trimoxasole (still have no recommendations about that, only studies), but I take it protective. He afraid that co-trimoxasole can protect from few patogens, yes, but also can increase other patogens and disbalaced microflora. Additional - can increase risk of liver and kidney harm. He says - it is better to treat disease if it occurs (minimum risk), rather than further harm your liver and kidneys (which are your vital)

[ehpich]

My doc also said you don't have any problem with your 12 cd4 cells before (only low titer of Candida), why worry now when they are already 500 ?! I have a patient who came 25 years ago with 0 cd4 cells and now, 25 years later, he is alive and well and we discuss it each conference. I have patients who for two years with 160 and 560 cells are no longer alive. More patients can't increase they cd4 more than 2 for a half year, I increase average 160 pro month (with 5 years diagnose before today and 5 years with no meds). Do not look so your cells. Most importantly, do not change your lifestyle, not to be under stress, to take their daily medication, to do periodic tests and best not to think about HIV. Must live your life, not live about HIV, cells etc. Everything is individual and depends on the effectiveness of your immune system rather than the number of your cells. It is important that your viral load is undetectable (time by time picks are also no problem).
And he ask me to discuss my case on the next conference.

P.S. Even more curious is that my partner was diagnosed one year before me with 472 cd4 cells, fell to 300 and last year alone picked up to 380 with no meds....and still increase. Maybe I must change it - hi's mutant :-))))

Well see.

[Jim Allen]

There have a lot of univercity studies about salimaryn protection function. If you take it 6 hours after your hiv meds (better, no "must") all is ok.

Links and proof please for both statements?

My doc think better don't take co-trimoxasole (still have no recommendations about that, only studies), but I take it protective. He afraid that co-trimoxasole can protect from few patogens, yes, but also can increase other patogens and disbalaced microflora. Additional - can increase risk of liver and kidney harm. He says - it is better to treat disease if it occurs (minimum risk), rather than further harm your liver and kidneys (which are your vital)

This drug class is used as a prophylactic treatment against PCP and toxoplasmosis. It is commonly prescribed to people with HIV and low CD4 counts

There are plenty of recommendations, here is one http://www.who.int/hiv/pub/guidelines/ctx/en/

Any antibiotic course taken will upset the flora somewhat is the experience, but a co-trimoxasole course is short, preventive, its not life long and the reason its recommended is its known that it is better to prevent death in HIV patients that try to deal with PCP once the illness has set in and leads to death.  I disagree with you doctor in general dead patients are much harder to treat and ones that breathe on own accord. The advantages outweigh the disadvantages hence treatment recommendations.

The flora and Bactria in the body will grow back and it in the meantime the treatment will help prevent one of the leading causes of death.

But all in all you don't seem to be in that class of low counts, or risk group that would need preventative antibiotics.

take their daily medication, to do periodic tests and best not to think about HIV. Must live your life, not live about HIV, cells etc.

That I can agree with that, take you pills and live your life, go for testing when due.

P.S. Even more curious is that my partner was diagnosed one year before me with 472 cd4 cells, fell to 300 and last year alone picked up to 380 with no meds....and still increase

Why would that surprise you? Its not that uncommon to see CD4 fluctuations, and no two people have exactly the same disease progression, however also big thing to keep in mind is CD4 count does not show all the damage being done by HIV as we now know, hence less focus on them and more focus on VL and getting people onto treatment.

Jim

http://www.who.int/hiv/pub/guidelines/ctx/en/
http://www.aidsmap.com/Cotrimoxazole-iSeptrini/page/1731332/
https://www.ncbi.nlm.nih.gov/books/NBK298965/
https://forums.poz.com/index.php?topic=51849.msg719533#new

[ehpich]

Thank's Jim !
As I say - I take Co-trimoxasole for prophilaxis, but not every day :-)
I will give links to univercity studies about Salymarin later (don't have mutch time now to search). That are prefer Hepatytis and Diabetes studies and show regenative, reparate and cleaning functions of Salymarin and normalize AST, ALT and Creatynin cinasys (I hope - translation is correct).
6 hours are maximum time to you meds to go in bloot/cells and leave you stomach. Don't need to provide links abot that - it's written in every patients medications info.
You can check/search also about that.

[ehpich]

On the fast search:

https://www.researchgate.net/publication/6586989_Hepatoprotective_herbal_drug_Silymarin_from_experimental_pharmacology_to_clinical_medicine

http://bmccomplementalternmed.biomedcentral.com/articles/10.1186/s12906-015-0861-7

https://www.ncbi.nlm.nih.gov/pubmed/21466434

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3894463/

http://www.academia.edu/21511091/Clinical_studies_with_silymarin_Fibrosis_progression_is_the_end_point

https://clinphytoscience.springeropen.com/articles/10.1186/s40816-016-0019-2

http://hepatmon.com/479.fulltext

http://www.medscape.com/viewarticle/422884_5

http://www.nature.com/ajg/journal/v93/n2/full/ajg1998644a.html

[Jim Allen]

None of the links provided are convulsive and none of them answered the statement you made .

There have a lot of univercity studies about salimaryn protection function. If you take it 6 hours after your hiv meds (better, no "must") all is ok

.

Show me a link to back up the statement you made that indicates HIV meds always cause or lead to liver damage and that Salymarin 6 hours after the meds in question will negate that effect (all is ok) ?

- You can't, I know you can't so stop it.

Diabetes studies

I don't have diabetes I have HIV.

You can check/search also about that.

No you made the statement, back it up. That how it works.

Anyhow trust me move on from this one, just be careful with such claims or statement here as you will end up being asked to prove it.

Look I am glad you switched treatment and you are doing well, don't get too hung up on stuff just take your meds, be happy and live your life.

Jim

[ehpich]

And If I can not speak for everything I want and will have restrictions for every second my word, better to leave this forum, that's not my right place. I don't need restrictions and the next Big Pharma Ideology.
And that "moderation" is full discrimination (I think that).
If you think somethink - write you post, not to moderate and delete ! Or restrict !
That's I can say you only !
If not - sorry, but that's NOT forum. That's BLOG !
I want to discuss and learn more and more, not repeat 3 words, sayd from Big Pharma.

And I wish you: All the best & be healty more long long time !

[Jim Allen]

You can post whatever you like within the rules and within reason.

You can not flame-bait and/or personally attack other posters here, you might feel that restricts you but that are the boundaries, one of your last post was removed as it was just a wind-up post and you have been given a warning for the flame-baiting attempt.

Nobody is supporting big pharma, you were simply were asked to backup your claims with science and have chosen to make it a personal crusade. Good luck with that one but the rest of us don't have to put up with it.

If you can not post in a civil manner than simply don't post.
Anyhow I will not be warning you about flame-baiting or personal attacks again.

Jim

[ehpich]

Haha, you delete my second post ? All my post ?

Thanks, baby. I leave.
You forum is the bad place.
Good bye !

[Jim Allen]

Yeah, you said to delete it so I did as it had no content.
Look cut the drama already, it does not suit you.

You forum is the bad place.

  Yeah because we ask you to provide facts and not fairy-tales and ask you to also not personally attack posters, and to be civil towards other members. Shocking, well gosh sure if it helps you sleep at night to believe were a terrible bunch of people go right ahead it will not bother me one bit.

Look I wish you all the best with the switch in medication and I hope it resolves your concerns and issues. When you are ready to post in a civil manner by means you are more than welcome to do so, in the meantime you have copped a 30 day ban.

Jim