Cd4: 308 Started Truvada, Reyataz & Norvir - Complications?

[engineergirl]

I started meds two weeks ago tomorrow.  Physically, the side effects have been manageable.  Mentally, not so much.  I've cried twice, maybe three times and if you count short bursts of whimpering on my way to work, well it's probably closer to ten times.  I won't go into all the details of why I'm so hurt/ upset/ whatever.... here, there's a place for that in another forum I'm sure.

I've had the normal side effects; headache, nausea, stomach pain, diarrhea, low-grade fever, chills, muscle pain, joint pain, dark urine, etc.  My partner swears my eyes are starting to turn yellow... they are.  She wants me to call the doctor tomorrow.  I'm having a rough night.

I don't want to be the patient, you know... the one who reads the back of the bottle and matches every symptom to themselves in one way or another.  It's annoying.  But I think, yes, I'm admitting my wonderful partner Jess is right, that something might be wrong.

Aside from being wrong... is there good news out there on side effects subsiding?

All the best,

Amanda

[deibster]

Amanda, I would call your MD Asap. I don't see any advantage to Reyataz & Norvir; and I was on them. I'm now on Kaletra, which combines 2 PIs in one medication with less side effects, for me. Also, Truvada has some serious side effects as far as cholesterol & triglycerides are concerned. I am on Epzicom(another combination drug) and Viread. Not everyone can take Epzicom(some people have a genetic reaction to it), but there is a simple blood test to see if it is compatible with you. You can check out medications & their side effects at
http://aids.emedtv.com            Good luck with it. Hugs, deibster

[BlueMoon]

Amanda, I have been on that regimen for almost two years, with no side effects except occasional yellowing. 

I'm not sure I would consider your list of complaints 'normal', and the drugs in that combo are not known for psychological effects.  You should definitely see your doctor soon.  It's normal to have a blood test and exam a few weeks after beginning meds anyway.

My doctor claims that this regimen is one of the most tolerable, and it has been in my case.  Hopefully the side effects will subside and you can continue on it.  If not, there are other meds to try.  I don't know about the mental effects though.  I doubt that's a direct effect of anything you're on, but your doctor can advise you there.   

The yellowing is harmless, and usually fades after a week or two.  It's the Reyataz stimulating the liver to produce excess bilirubin, a yellow pigment.  There's not much you can do about it, but sunlight can help.

Good luck with it all.  It'll all be worth it once your viral load gets to 'undetectable'.   

[newt]

Hello

I would consider this an emergency situation. The symptoms you describe are possibly (may I stress possibly) consistent with lactic acidosis, a serious side effect from (probably) one or both of the two drugs the Truvada.

Since there are other explanations for what you describe, it is a good idea to see a doc.

Sorry you's having such a crap time, if there's one time you want sommat to go right and straightforward it's starting these damn meds.

[Ann]

I've had the normal side effects; headache, nausea, stomach pain, diarrhea, low-grade fever, chills, muscle pain, joint pain, dark urine, etc.  My partner swears my eyes are starting to turn yellow... they are.  She wants me to call the doctor tomorrow.  I'm having a rough night.

Hi Amanda, it's good to hear from you, but I'm sorry you're having such a tough time.

I would like to second Newt's recommendation that you see your doctor. What also came to mind for me (aside from lactic acidosis) is that your symptoms also sound like an ordinary flu bug. It could just be a crappy coincidence that you got a bug just after you started the meds.

And as BlueMoon noted, the yellow eyes are a common and harmless side-effect from the Reyataz. It should subside in time, and may recur now and then, especially after having alcohol. (as other forum members have occasionally reported)

Hope you're doing well otherwise. What happened to you and your partner's blogs?

Keep us posted - I hope you're feeling better soon.

Ann

[engineergirl]

Ahh, my blog.  I deleted it.  Long story short, it became a target by our children's, father's girlfriend.  (Complicated), I know.  

As for my sickness, I didn't go to work this morning.  I'm exhausted from being up so late and the nausea and stomach pain are still very much there.  I called my doctor this morning and left a message.  I'm waiting to hear back from him.

As for the "mental" condition... I'm just saddened to be starting meds and frustrated with being infected.  I'm okay though.

I did get vaccines the day before I started the meds.  I got a Pnuemovac, Meningitis vac, Tetanus and Hepatitis B,  then last Friday I got the Seasonal Flu & H1N1 shots.  

Thanks for listening.  

The nurse just called, she is going to track the doctor down (he's doing hospital rounds) and call me back by 3:00.  Yay?
 

[Ann]

It sucks that you had to take your blog down because of some interfering busy-body. I used to enjoy reading it.

I can't help but wonder if getting all those vaccines so close together isn't something that's contributing to how you feel. After I had a bad reaction to the hep B vax, I'm very wary of having more than one done at a time.

Don't forget to let us know what the doctor had to say.

Feel better soon!

Ann

[engineergirl]

I'm on my way in to get some labs done and they have scheduled me an appointment for Monday at 2:00. 

My VL was 130,000 when I started meds last week.  How high can ones VL get?

Well, off I go.

[jay195]

Hi Amanda, sorry to hear you are having a rough time and I hope you can it all sorted ASAP. I am on the

same combo as you and have been fine, except for slight yellowing of the eyes, which my daughter also pointed out the other day.It's ok to cry if you feel like it, when I'm having a " feel sorry for myself how could I have let this happen day " I let rip and feel all the more better for it.Please don't beat yourself up over this. Hang in there and you'll be fine

[engineergirl]

Thanks for all the support.  I'm still feeling sick most of the day, but have found that ginger tea manages the nausea quite well. 

Thank you though, for your listening ears and kind words.

Amanda

[engineergirl]

Doctor said, "I know it's tough, but ya gotta tough it out". 

ok....

[weasel]

Hey Amanda 

 I have been on the  drug combo for 5 years now !

I am  doing well ....................

 VERY WELL !

I have been able to DROP my  Celexa !   and most of the clonazapram !

 I feel  OK , MOST of the time !


 Most people  are surprised  I am 55 !

I am NOT that gullible , but I look better  than MY TWIN  that is NOT  HIV !!!!!!!!!!!!!!!!!!!!!!!!

   HOPE THIS COMBO WORKS  FOR YOU   

    It is NOT perfect , BUT it is an OK      treatment !

 The side effects are minimal !

                                                      be well ,

                                                                     Carl

 

[risred1]

Amanda...

The demarcation onto meds is obviously a significant moment in living with HIV.

We all react differently to that moment. And it doesn't help that during the initial few weeks, the adjustment to the meds can be difficult, which makes this demarcation all the more "significant" in our lives.

My thoughts about my HIV and going onto meds is in my Reyataz Log on this forum. I don't know if it helps at all to review my day by day accounting of the transition onto a Reyataz Platform.

http://forums.poz.com/index.php?topic=27269.0

I did have some side effects that I noted, which you seem to be having a more severe reaction. I'm glad you went in to consult with your doctor.

As to how high your VL can go, well, it can be literally in the millions. A VL or 130k, in some doctors parlance, or the significance of 130k, when dealing with the Logarithm of VL's, (values of 10), or in this case.... 13k to 130k is "only" a 1 log change. A 2 log Change to 1.3 million is considered very significant.

In my first month of treatment, I dropped a good 2 logs, from 115,000 to 1,200. A significant change for the better. So while you are dealing with these effects, which I do hope is temporary, I would hope the treatment will be very effective in quickly dropping your VL. In 3 to 4 months, I was undetectable on this regimen.

Anyways, its wacky mathematics and how one looks at "significance".

One of the markers doctors look at though is in the guidelines for front line treatment. And Being over 100k is a marker. Some look a VL differently than other and some will focus more on VL and some will want to focus on CD4.

Myself... I dipped below 350 and my VL was 115k. A full Log above my initial diagnosis. After 5 years of being POZ, I was exhibiting the symptoms of Longer Term HIV infection, and clearly my bodies ability to control the virus had been diminished. The main Culprit for me was the increasing Fatigue, and when any serious physical effort was undertaken, I "paid" for it for days of recovery.

While I did have a milder reaction going on meds than you are, I did notice headache, and digestive issues and rash and weird energy surges. Aches and Pains I did not. You did the right thing in getting your doctor involved as pointed out by this board. This board helped me quite a bit and even identified a combo error, which I talk about in my log.

If your reaction is just a more severe adjustment, there are tricks you might want to try to ease some of these side effects.

Ginger for Nausea. Excellent. I simply do not understand why this isn't more commonly used as a anti nausea agent. I have freezed dried ginger caps. Just makes it easy. Also, Pickled Ginger (the kind you get with Sushi), is also a tasty way to get some ginger. This is not to be confused with Ginger Ale... While Nice... I don't think it really packs a punch with dealing with Med Nausea. A Ginger Beer or a brew that uses ginger that you can taste the heat of ginger, may be more potent. Regardless, there are many forms of ginger that may help with the Nausea.

Glutamine and Fiber for Diarrhea. Fiber Supplement, in this case Psyllium Based Fiber, with added glutamine powder can really help with the diarrhea. I use Costco Brand (generic) Orange Flavor Psyllium Fiber Powder, but Metamucil is the brand name if your looking in your pharmacy. You just add a heaping teaspoon of that to 8 oz. of water ( i usually go 12 to thin it out), and to that, you add powdered Glutamine, which 10 grams is a good place to start when trying to control Diarrhea. Now you can just use Imodium. Which i keep around and carried with me when i went to work if I needed it. But the glutamine has long been used by folk with med induced diarrhea, especially kaletra, to help manage and control it. I continue to use this Fiber and Glutamine drink daily, and things are working "never better". My Glutamine maintenance dose is 2-5 grams a day. You can get Glutamine Powder in bulk from Buyers Clubs.

I also take my pills with a drinkable Yogurt. The combination of Friendly Bacteria in the Yogurt, with the Fiber and the Glutamine, I believe, has the benefits of keep the digestive track in good shape during the transition and continues to be an everyday thing for me.

The interesting side benefit of using Psyllium Fiber is that my cholesterol has dropped 40 points since I started it.

I also take a Multivitamin with Selenium. And add to that Alpha Lipoic Acid, NAC and Carnitine and 2500 units of vitamin D. I also take a legal over the counter steroid - 7 Keto DHEA.

My view of these supplements is that they "may" be of use. Others do not share this view.

I also has suspended my use of Ginseng Caps as we need to be careful with Herbs. And limit my use of NSAIDS, in this case Aleve (Naproxen). Right now I have a bit of tennis elbow from carrying equipment. I just take 1 Aleve which I have found works just fine, and only when I need it.  I used to be much more liberal in how I took Aleve prior to meds. (there is some cause for concern about the use of NSAIDs  like Aspirin, Ibuprofen, etc.) with Truvada. (well its the tenofovir in truvada).

I have always told my doctor what I've been taking pre and post meds. We keep it documented. For the most part, he's ok with the supplements I take. But that's my doctor. He doesn't substantiate my supplement use, but monitors my blood work and overall response. He is a bit suspicious of the 7 keto DHEA and my liver counts. But hasn't yet said, enough of that.

So you do have to look at what your taking along with your meds, and this means everything from Aspirin to Vitamins to other supplements and consider their place in a medicated regimen.

And if you are having a problem with this combo, well there are other ones which may include the latest drugs, which might circumvent the issues your having today, if they are ultimately intolerable.

I hope this helps, and I hope your adjustment to medication is a successful one, no matter what form it takes. It may take a while to find the right combo. I happen to think that the Reyataz Truvada Norvir combo is pretty solid, but there are alternatives within the Reyataz combinations. (substitution of Epizcom for the Truvada).

Good Luck!

[aztecan]

 

My VL was 130,000 when I started meds last week.  How high can ones VL get?

Hey Amanda,
I have seen viral loads in the millions. Those viruses can be proliific little buggers.

 I'm still feeling sick most of the day, but have found that ginger tea manages the nausea quite well.  

Back in my AZT/Crixivan days, I used to use sliced lemons to help with the nausea. I know it sounds crazy, but sniffing a freshly sliced lemon really helped keep my stomach contents where they belonged.

Just thought I would share an olde folk remedy that worked for me.

Doctor said, "I know it's tough, but ya gotta tough it out".  

ok....

When I took Reyataz and Norvir, along with my Combivir, I didn't experience any tummy issues. Of course, after 11 years of Crixivan, I could probably have swallowed battery acid without compllaint.


I hope this clears up for you soon.

HUGS,

Mark

[engineergirl]

Thank you for all the helpful and kind words.  Today marks one month on meds.  I feel good minus the daily intermittent bouts with nausea.

Amanda

[risred1]

So I take it that you did not have an issue with lactic acidosis?

Your reactions sounded pretty severe, is there anything you'd like to share about what the doctors tested you for and the results?

I'm happy to hear that after a month, your doing better.

As to the nausea...

I do take my combo with a Yogurt smoothie drink. And have toast with peanut butter as my breakfast... but now I can vary my breakfast.

This just might take some more time to adjust, but you might want to take a closer look at Fiber/Glutamine and Yogurt. Or just Yogurt....

You'll have to let us know how your doing in another month...