POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on August 26, 2007, 02:20:54 pm
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I think I made a big mistake. I never should have stopped Crixivan.
Its not that I don't like Reyataz or that Norvir is causing any problems. Quite the contrary, they have been easy to take, presented no side effects and all should be well.
Notice I said should be.
Unfortunately, I had to stop taking my PPI when I started Reyataz. Apparently, it needs the acidic pH to be absorbed.
But my stomach doesn't need it. I have been taking 20 mgs of Pepcid a day (10 mgs in the afternoon, 10 mgs with my evening Combivir).
It worked pretty well for a while, but now I spend between 6 to 8 hours a day with the most god-awful heartburn. Every time I burp, it feels like I have hot acid in my throat. At first, it was confined to what felt like the top of my stomach, Now, I feel it all the way up my throat to the back of my mouth.
I have genetic predisposition for this type of thing. My father wound up hospitalized when he suffered a rupture that spewed the contents of his stomach into his abdominal cavity.
The same thing killed my grandfather because peritonitis set in after he suffered a similar rupture.
I really don't want to go there myself.
No matter how easy the dance with Reyataz, I may have to look for a new dance partner.
I am truly very sorry I stopped Crixivan at this point. The hump and skinny legs seem very insignificant to me after having suffered first with Sustiva and now with the loss of my PPI.
I will speak with my doctor about this either tomorrow or Tuesday.
I am exploring options. Kaletra may be one, or Lexiva. Both look OK from what I've read and don't have the PPI restriction. Actually, Reyataz is the only PI that does have PPI restriction.
Or, I may just opt to go back on Crixivan, this time boosted with Norvir, thereby eliminating the meal scheduling.
Having to jump around med-wise really irks me.
I guess I was really spoiled.
HUGS,
Mark
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Mark, I went through a quick succession of combo changes like this several years ago (albeit for different reasons) but eventually you will find the correct one. If it were me I think I'd try at least one more switch before resorting back to the disfiguring Crix but that's your call of course.
Sorry to hear of this as I really know how it is.
Just a question: if your doc knew of the PPI issue (or did he not?) then why did you not just go on Kaletra, etc. in the first place?
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Actually, he didn't know. I pointed it out to him after researching Reyataz and prior to my starting it.
He was mostly concerned with hyperlipidemia, which can be exacerbated by Kaletra. Reyataz is a more lipid-friendly PI.
Even the Pepcid must be timed carefully to ensure there is a 10-hour separation between the evening dose of Pepcid and the Reyataz.
The afternoon dose simply must be two to three hours after the Reyataz.
I agree about going back on Crix though. It is still an option if all else fails but I would rather give some of the others a shot first.
I think it will either be Kaletra or Lexiva. It would be a straight across the board switch, so it shouldn't cause any resistance issues.
HUGS,
Mark
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Mark-
I sympathize with the GI issues. Mine come from years of taking Ibuprofen to control migraine/chronic pain and my esophagus/stomach are completely ulcerated as a result. Obviously your issues are much more severe, but I understand the "hot acid in the throat" thing.
I will say, though, you're the only person I've ever heard who speaks quite so lovingly of Crixivan. Kaletra comes with its own host of goodies, too. But you already know that.
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Oh man, acid lined esophagus! What about Nexium for PPI issue/meds compatibility. Wouldn't that work?
Mike
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I was just gonna start a thread to ask if I was the only one who spent the first 2 to 3 hours of their day puking... I do reyataz,epivir, viread, norvir, bactrim, prozac, synthroid... not in that order..
Hang in the stud.. I pray that the benefits out weigh the heartburn... And one more thing.. I find a teaspoon of baking soda in some water works far better then the pharma cures..
love you!!!
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Mark
GI issues must be accomodated by the HIV meds....you should be on Nexium. What a choice!!! Dying from esophagus ruptures and etc or HIV ....!!!!! I hope you dont wait to resolve this!!
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Hello Mark,
I don't have any words of expertise, to offer you, but just to let you know, that I am thinking about you and wishing things get sorted out real soon for ya. Just curious,... Have you ever had an upper endoscopy done ? I wonder if you should ask the doctor about that.
(((HUGS)))-------Ray
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Mark,
I hate it that you are having to go through this. I know what it is like, changing a combo.....but I do think you should, and maybe Kaletra or Lexiva will do the trick for you.
I'm right with you on the lipo thing.....we may just have to resign ourselves to accepting our "new shapes", if we want to continue with any semblance of a normal life. How you feel is definitely more important than how you look (and I used to be the most vain person on earth).
Best of luck with the next try.....
hugs,
Alan
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Oh man, acid lined esophagus! What about Nexium for PPI issue/meds compatibility. Wouldn't that work?
Mike
Hey Mike,
Nexium isn't allowed with Reyataz. I was taking Prevacid, then Prilosec, then Protonix, then had to stop because of the Reyataz.
All I'm alllowed is Pepcid, or its equivalent, and I must time it carefully.
Thanks all for your support in this. I never dreamed it would be so difficult to find a new regimen.
Like I said, I was spoiled.
Hey Brent, if it weren't for the body shape changes, I would still be taking Crixivan. I never had much of a problem with it once I learned how to get around some of the minor problems it caused like kidney stones.
I don't know if that is speaking lovingly of it. Maybe it was out of habit. Once you incorporate something into your life for a decade or more, it sorta becomes the norm.
Again, thank you all for the support. It does make me feel better.
Oh, and Alan, I have a hard time believing someone as nice as you could ever have been vain.
HUGS,
Mark
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damn, damn, and damn.
i am sorry to hear this, Mark.
for what it's worth, though: i have had a great ride so far with Kaletra (the NEW blend, not the wretched old formula). it's kept my VL undetectable and gives me almost no troubles at all.
except, of course, for an ongoing need for keeping Immodium close at hand.
that- and, yes: crestor for the high cholesterol. mine had reached the 500 + mark about a year ago.
it's now back down in normal ranges.
i really hope you can find a combo that works well for you that you can live COMFORTABLY with.
you certainly deserve that.
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Raltegravir (the Merck integrase inhibitor) is supposed to be approved in October. I wonder if that would be an option for you.
I've been taking it since February on expanded access with no side effects. (Which is not to say that will continue to be the case.)
After being on your first regimen for so many years, it must be difficult to have to keep changing at this point. I hope you'll find an effective combination without having to go back to Crixivan.
Good luck, Mark.
Allan
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Keep us posted Mark. Sending positive thoughts your way!!!
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Sad to hear of you can't take Nexium. It's a damn miracle drug. I had to deal with PPI when I had a bad reaction to one of the aidsmeds drugs. Mark, I know you are suffering. I only had to deal with that hellish burning for three days. I couldn't eat enough Tums before my doc wrote the Rx for Nexium.
Hope something makes this go away SOON.
xxx,
Mike
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Mark, face it, you are finally getting fucking old, ;) or maybe you're going back to your youthful stage where you can't make up your mind what you want. :D Don't you just hate it when the woman in you can't make up their mind. :D I'm sure whatever you do, you'll make the right decision. Good luck to you.
Rodney
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OK, just to add a bit more spice to the story, I got my lab results yesterday.
Viral load undetectable (< 50), CD4 not bad (1,048) CD4 percentage up a bit from 38 to 40.
The big news came on the blood lipids front. For the first time since I started keeping track, and since I started meds, my cholesterol is "normal."
Overall cholesterol - 170
HDL cholesterol - 31 (still a tad low, but the first time that number has ever been more than 28).
LDL cholesterol - 76 (A very good number, if I do say so myself).
Ratio (drum roll please) 2.5 (At the high end of normal, but NORMAL!)
Triglycerides are still a bit high at 317.
This after just a month on Reyataz/Norvir.
Now I have a real puzzle to think about.
I have been trying to attain these numbers for years without success. The only way I even approached it was to basically starve myself.
So, on the one hand, I have gastric distress, and on the other, I have cholesterol success.
I talked to the doc about it and I am going to try continuing on this regimen, including the Pepcid, plus adding Tums for intermediate distress.
I asked about the baking soda and water and the doc said only very sparingly because of the issue of kidney stones.
I am going to give it a shot to see how it works. I needed extra calcium anyway so Tums may be beneficial on two fronts.
It is not ideal and certainly not as user friendly as popping one PPI a day, but I really don't want the blood lipids to go crazy again.
Wish me luck.
HUGS,
Mark
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Mark
Nexium actually blocks production of stomach acid and relieves not only the heart burn but also helps repair damaged tissue...or so the product literature says.
I am still concerned that TUMS is not going to do anything to help you. It may only cover up a symptom......and leave your esophagus in real danger. Have you had the endoscopy? What was the result?
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Hey Bear,
No, I haven't had the endoscopy yet. It was one of those things I have meant to do, but never did. I guess I should get it done, if only to see if there is damage and how much.
That will help determine what to do next.
Sigh,
Mark
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Mark, you've gotten some good, informed suggestions here.
I just want you to know I am thinking of you and how difficult this is for you, wishing you well and hoping the solution to this situation is swift, effective and long-lasting because that's what you deserve.
Best to you, buddy,
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OK Mark, CD4 1048 "not bad"?! I would love to have those numbers!
I feel for you. My acid reflux doesn't produce heartburn just fun silent symptoms like eroding my tooth enamel and that great feeling of burping up a little vomit. Keep us posted, I'm going to have to deal with the PPI issue when I start meds I guess. I'd hate to have to rule out reyataz totally.
PS I'm actually beginning to wonder if I didn't get HIV from oral sex. If semen got into my acid-reflux-damaged throat. I didn't have any unsafe anal encounters.
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Hey Mark,
Congrats on the great numbers! Why is it that everything has to be a "trade off" for us? good numbers, but other problems.
Hope you can come up with a solution to the G.I. issues...
hugs,
Alan
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Mark, I'm sorry to hear about the trade off issues... the gi's .. eat plenty of brown rice it really helps... I had it with the wonderful drugs kalentra and zerit.. no matter what I did I had very little relief... the atripila I'm taken now was a a gift from God... let us know how your doing... John
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damn, Mark, it does seem like it's always something, doesn't it?
Your numbers are phenomenal.
I sure hope you find something soon that works for the GI issues and keeps those numbers gorgeous.
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hi mark
you may have already said something about this n I missed it..but has your dr not suggested trying an increased famotidine dose of 20mg twice daily..? Over here, that would be a standard maintenance dose for reflux disease
nice new numbers, by the way - very impressed :)
kate
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Agree with Penguin, get your MD to increase the milligrams. I take the 40mg Pepcid once a day and it does the trick.
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I discovered something recently. When I stopped taking Chantix last week, a lot of the stomach distress ceased as well.
At the moment, I am letting it ride, so to speak. When I get back from AMG 07, I will follow up with an endoscopy. Once the results are in from that, I will decide what is the best next step to take.
For the time being, though, I am feeling much improved. I guess the Protonix was masking some stomach distress caused by the Chantix that I didn't know was there.
HUGS,
Mark
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Mark, I was given a prescription for Chantix today and with it was a prescription of phenergan 25 mg. to take with the Chantix. So stomach problems must be a common issue. That's what I'm giving myself for Christmas.