POZ Community Forums
Main Forums => Living With HIV => Topic started by: anniebc on November 21, 2006, 03:59:11 am
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Hi everyone
I have been having a few medical problems lately and yesterday was a bad day for me, I was rushed into hospital with sever upper stomach pains, normally I have a high pain tolerance but yesterday it had me in tears..after a few good sucks on Enotox which did little for the pain they gave me 10mls of Morphine, after a while that did the trick, they took some bloods and wanted to keep me in, but I felt well enough to sign myself out.
Today hasn't been to bad just a few twinges here and there, my ID doc phoned earlier this evening with some of my results:
ALT..220..(normal range 0--40)
AST..294..(normal range 0--40)
I'm on 3TC..300mg once a day---and Ziagen 150mg once a day.
My CD4 is 1040
V/L is <50
Here is where I need your thoughts and advise, my Doc is talking about a drug holiday to see if there will be any change to my Liver functions while I'm off the meds..as you can see I'm in a really good place with my CD4's and V/L and know if I go on a drug holiday this will change..but if I don't there is no other way of knowing how it will affect my liver results...or is there?
At the moment I feel as if I'm damned if I do and damned if I don't..I'm also dealing with other medical problems (not HIV related) so I'm feeling a little overwhelmed at the moment not to mention confused and I hate the fact that I can't deal with this on my own right now...so any suggestions or advise would be much appreciated.
Hugs to you all
Jan :-*
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I just wanted to give you a hug Jan.
I'm sorry you've having a tough time lately healthwise. I know nothing when it comes to meds, side effects and test results...but I know how crap it feels to feel crap! As you know there are plenty on here who will be able to advise you accordingly from their experiences.
I just wanted to give you a hug.
And wish you better of course.
Promise I'll hold my breath and not breathe my germs on ya, hon!
(((((((Jan)))))))
Melia :-*
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Hello Jan, Sorry to hear about your troubles, I don’t feel qualified to offer advice, but I will send you good wishes and hugs.
Take care,
John(UK)
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hey Jan,
I'd say give the drug holiday a go. with numbers like yours you have a pretty good buffer, and you can't go on feeling like crap.
but don't rush into it. take some time to think about it. see what others think. take some deep breaths and try to relax. do what is right for you.
Sending all my love.
Little Steve
ps i'll send you the latest baby pics tomorrow to cheer you up a little.
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Hi Jan,
Well, you know I am not one to give medical advise, but in your case I will. I think you are fine with taking a medication break, as you have not been infected for all that long, and you have a load of leeway when it comes to your HIV numbers. I can tell you that when taking all these meds that your liver will have the chance of getting really screwed up, and we all know you can live without meds for awhile, but the liver is another story. I also see you are not on a total cocktail, as you are missing a PI, and when talking about HIV meds, there is no "HIV lite". I would highly recommend that you go ahead and stop the meds now, and just watch the numbers. If you fall too low, you can always start again, but I would steer clear of these two drugs when you do. Your CD4s are at a very healthy state at this point, and I would think that your body will do quite fine without meds now. You are active, you eat right and you don't harbor stress; so I say let the meds go!
Glad to see you came out of this incident OK, and hope you have nothing left over from it.
In Love and Support.
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Hey Jan,
I'm sorry you're suffering. My first regimine made me nauseous and gave me stomach pain - it's no way to live. A couple observations: your numbers would seem to permit a holiday, provided they were above 350 when you started treatment. You'll need the buffer as things will probably go south number-wise off the drugs; also in your list of drugs, I see no mention of a protease inhibitor or nnrti, guess you don't need one. The drugs your taking seem rather toxic compared some newer combos - like Truvada. Time for a break, give your liver a breather and then consider a newer therapy combo. Hugs,
Ernie
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Jan, sorry to hear that your levels are so high. If I had your CD4 count I would take a break. Since they are going to be monitoring you, I don't see a problem. Wishing you well and I hope that you get to feeling better.
Rodney
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Jan, (goodness, I was tired when I started this message this morning!)
A holiday probably wouldn't hurt, specially with your counts so good. It sucks to not feel good, and if the holiday will help to determine if it's the meds, then I'd say give it a go. I took a drug holiday that lasted 2 years, and I have to say it was nice to not have to worry about scripts and the time of day to take the meds.
However, just be forewarned that when the time comes to go back on meds, you may feel a little disappointment.
I hope you get to feeling better soon.
Be well. :-*
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Jan,
Just wanted you to know that you are in my thoughts and prayers!
Hugs
Teresa
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Sorry to hear you are having problems. I do not know enough about drug holidays to properly advise you but I do hope everything works out for you. Oh and what Moffie said sounds good..We can't live without our livers and I don't think the doctors would let me give you some of mine so take good care of the one you have. Love, Cristy
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I've only got a hug and a kiss for you ((( :-*))).
I know more good advice will pop up here very soon for you.
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Jan,
(not sure why you’re only on 2 nukes, nor why the half dose with the ziagen..? Heard of 150mg 2x/day used, in people with liver impairment, but not heard of 1x/day)
Alt/ast consistently >2.5x upper normal limit (without explanation), most dr’s will start to get a bit concerned. Your alt’s, at 3.7x uln (60), are less of a worry than the ast’s - 6.8x uln (43). I don’t know what your liver function normally is, nor what else might be going on health-wise, so it’s hard to say how much of an effect a break will have (or what role meds are playing - ziagen and 3tc are, usually, relatively easy on the liver)
assuming this isn't just a one off result..
Treating/removing the underlying cause of the liver elevations will calm things down - if this is nuke related (ie, summat like fatty liver/steatosis etc, quick ultrasound would check this) then stopping should sort this. If it’s related to some other health issue (which, from your post, I’m guessing it is..?) then stopping for a bit will at least give your body 2 less things to process, so should still help.
Your other numbers, are excellent, so can withstand a break - you may only need to be off meds for a very short while, anyway.
Please do get your dr to give you some adequate pain relief for home..
Take care - sorry I can’t be of more help. kate x
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Jan
Have they ruled out other possibilities for the elevated liver #s? Hepatitis or something else?
With your numbers I can't see any serious risk to taking a break, with close observation obviously.
You've got plenty of wiggle room in that area.
I don't have much else to offer except I don't like seeing you in pain and distress. So I'll be anxious to hear what you decide and whether or not it's bringing you any relief.
Please keep us posted.
RAB
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Hi Jan -
I think a break would be fine and better yet, you can wait on the sidelines as less toxic drugs shake out of the pipeline. Rab is right in determining other possibilities. Perhaps there's something environmental going on that's not directly ingested?
If you do take a break, make sure you check out milk thistle, whey proteins, lipoic acid and other things to help your liver heal.
I will keep you in my thoughts. I know this is a big fear we all have but you're in a strong position to overcome this.
Jason (btw, I'm glad you connected the dots w/ who I am :))
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Honey, I'm worried about you. To know that you are in pain just kills something inside of me....
I agree with Tim and Rocky, I think it would be fine for you to go on a treatment interruption (drug holiday). My friend Kevin has recently had to do this, as his liver enzymes were all screwed up.
I'm just wondering if and how this is all connected with your other medical issues. Maybe Gerry will give some advice here. Take care of yourself honey, you know I love you....
sending warm hugs and kisses,
Alan :-*
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((((((((((((((((((JAN)))))))))))))))))))
I really can't offer any advice here but I wanted to let you know I am thinking of you. Hope your pain subsides and that the Doc can find out what is going on. I hope you feel better VERY SOON.
I LOVE YOU,
Dan :-*
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I too am thinking of you Jan. And we have a little connection that makes you feel very near.
I do hope this passes as fast as it came on, as these things do sometimes.
Sounds like you're basically on epzicom, that I also take, plus I add in sustiva (or they do).
A monitored holiday should be ok. If its your current meds messing with the liver, then maybe a switch is a possibility?
Also if you take other "off the shelf" things like tylonel or ibprofin, those alone can do a job on the liver.
Just do what the old doc says, and know a lot of us out here are thinking of you and sending feel better wishes.
Randy
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Jan, know Me and Will are with you..
Love
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Hi Jan,
A few years ago I went through a period where my liver values where very high, and I was diagnosed with a fatty liver. I can't remember which meds I was on at that point. I do remember that the doctor changed my cocktail, and I was told to not drink alcohol. I also was not able to eat large meals since my liver was pressing on my stomach. I ate many small meals throughout the day.
Everything did clear up, but it took about a year before it was all back to normal. It was a slow improvement.
If my numbers had allowed it, I would have chosen to take a holiday and allow my liver to heal without the added stress of the meds.
Big hugs going out to you and your family.
Christine
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Ouch!
A recheck on the AST / ALT is in order, plus your lactate and amylase lipase levels (we's thinking pancreas). Ultrasound to investigate comb-related fatty liver is a good diagnostic, but this condition don't always = high enzymes.
Stopping: Cessation of combo while the cause is investigated / treated is in good order. Your nos are very good, but prepare for a quick flu perhaps as (if) viral replication rebounds. Empirically, if the AST / ALT subside to normal or near-normal after stopping, then it may well be the meds. It's a bugger really, cos so many things give high liver enzymes.
Since abacavir and 3TC leave the body quickly, resistance from lingering sub-therapeutic drug levels is not an issue. Subject to discussion on are the meds behind the high AST / ALT, you should be able to re-use them again later. Liver-wise abacavir and 3TC are relatively kind, but clearly if you do stop, tis a good point to think about which ARVs will be kindest to your liver, esp. if the cause is non-combo related and you need to re-start before this is resolved. If you do stop for more than a week or two, I would personally, at least to start (like for 6 months), hit the virus 2nd time round with a full 3-drug 2-class combo, even though you seem to get excellent results on just 2 nukes.
Good luck.
- matt
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Jan.
Thanks for letting us know. We appreciate it. I'm with the others. You've got great numbers and that allows you plenty of leeway to take a holiday. If the symptoms continue, then we know it's not the meds and we'll have to look for something else.
collectively, we'll find out what's wrong with you and take care of it. That's a promise.
robert
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Hi everyone
Thank you all so much for your advise believe me I have taken it all on board and I will be talking with my ID Doc later today.
A quick run down on my med history...The young man I was infected through was resistant to 3 of the P.I's (Kaletra, ritonavir and indinavir) so the Doc in Australia decide to keep me away from the P.I's..he was also resistant to the NNRTI's...so those meds are a no no for me.
The reason I'm on a two med combo was because of sever side effects the AZT was giving me..and as you can see they have been working well for me these past two years.
I also know that those on NRTI's can be susceptible to liver problems and I think this is why the Doc wants me to take a holiday...up until now my LFT's have been pretty normal, with only a slight elevation over the last two years.
Due to the other diagnosis I have been given recently and having had a recent attack I will be having an MRI done on Monday 4th Dec and they will be including liver cuts, that way we don't have to do a separate CT scan ..so I will wait until I get the results from that...but it looks like a drug holiday is on the cards, as you all said I'm in a good place right now so I can afford to do this..it's just a bit daunting with everything else going on...I still have custody of my grandchildren and I worry about being able to look after them...not to mention all the beasts I have in my paddocks.. :D
Thank you all again so much for your well wishes and support..you have no idea how calm you all make me feel.
Hugs to you all
Jan :-*
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Hi Jan,
I'm sorry to hear this. It sounds like you receive some good advice (the treatment break seems reasonable and even warranted). When I stopped, my doctor had me come in for lab tests after one week, followed by two weeks and then on a monthly basis (at first). This was to ensure that the virus didn't replicate out of control once treatment was stopped (can result in becoming very ill, as Matt noted above). I suggest you also keep close tabs on your viral load during this treatment break.
Let us know how things go. To be honest, I'm a bit concerned with this lab result, now knowing the resistance issues, and the other medical issue. I hope your plate isn't too full and that you take some time to make sure you are doing okay!!!!
Love you very much Jan!
Cliff
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Hi
Just thought I would share this photo with you...my beautiful 4 year old grandaughter..she is one of the one of the main reason I have to make the right decision and get on top of things.
She had her first stage performance with her ballet class with her intereretation of "Mrs snail in her garden"....she got second prize... :D
(http://i88.photobucket.com/albums/k188/anniebc_photos/DSC00212.jpg)
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Jan.... Your Granddaughter is beautiful... You will make the right decisions with the help of you Doctor and all those who love and care for you...
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Hello Jan,
Sorry to hear that you've been having a difficult time, along with the other health issues. I am not knowledgable, so I can't really advise. But, I can imagine that a very well monitored structured treatment interruption, with your current t-cell count could probably be arranged---get those liver numbers back down.
Take careof yourself------Ray
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All I can say is the picture with your grandaughter is absolutely beautiful and I wish you all the best. Although I am not qualified to give medical advice I am qualified to give practical advice. And that is this, Tim, Alan and Newt have given their opinions and I would listen to their combined experience and expertise and utilize that to formulate my opinion.
Wishing you a peaceful and warm Holiday,
GBL
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Jan,
Sorry your having such issues.
I am slightly concerned about only having an MRI done for abdominal issues. Don't know what your having the MR for anyway, but if they're just throwing in some liver scans....hmmmmm. MR images generally do not give nearly the detail that a CT will. They can get a CT "slice" down to less than 1mm, while in order to get a decent image from MR, they will probably be at about 3 or 4 mm thickness. Additionally because of the time it takes to get an MRI picture versus a CT image, there is always motion from bowel peristalsis and blood flow in MRI. Can't do anything about it, that's just part of the physics of MR. CT images are acquired sub-second, so all of that motion is basically "frozen." They should be able to get a reasonable dynamic scan, or maybe even a liver perfusion CT scan would be in order. There's just a lot more options in CT for abdominal scans.
I'm sure your doc knows this, although, I have seen many that really don't. If you're not already having some kind of abdominal scan, you could get a CT done in probably a quarter of the time it will take to do the MR of your liver that they are just going to "throw in"
Just some thoughts to ponder.
Love you and hope you feel better very soon
Shane
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Jan~~
I'm sorry you are not feeling well, I hope things will get better for you. I have to agree with everyone else, you have excellent cd4, so why not have a lil vacation. I am so jealous.. ;) Thanks for sharing the pic of your grand daughter, she's a cutie. I will keep you in my prayers.
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I am sorry you are having so much pain. I can´t give you any medical advice but I want to let you know I will be thinking of you.
If it is related to meds I am sure there must be something able to keep your virus undetectable while being kinder to your liver.
You have a beautiful granddaughter, Blondie and everything...just like her grandmother.
Hugs and Kisses.
Juan
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Jan, with all that love you have around your house there is no doubt that you'll get better soon. If she takes after her grandma she is going to be a looker when she grows up. Don't forget your ear plugs on the 4th.
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Hi Jan,
While I was meditating earlier this morning you had come to my mind in thought. Sure enough as I logged on to the site today I noticed your post. It is unfortunate that you are currently dealing with these unwanted medical situations. However, through your strength and your endurance, you will get through this. This too shall pass.
As far as your decision to take a med holiday, it does warrant its pros and its cons. However, if the Doctor is attempting to pinpoint where the "cause" resides, then it may very well be a good choice to take the break. In fact, your CD4's and your VL are outstanding. There can be some variation just as you had mentioned.
It does come to a point were each and every one of us needs to make a decision in this life. When considering your "choice" think in terms of the long-term benefit for you. However it turns out, please do keep us posted. Also to share with you, after you came to my mind in thought as I meditated, the entire group here at Aidsmeds had come to thought.
The message was "clear" for each and every one of us to initiate and to practice positive thinking for each other. I will make another post with the details.
In the interim, Jan I want you to take care of YOU. You are in my thoughts and in my prayers that you will get over this hurdle in this life.
Make the BEST of each Day!
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Dear Jan,
I would trade numbers with you in a heartbeat, my last labs showed a 150 reduction in T-cells. My ID Doc is not concerned though so, I guess I shouldn't be either. The Director of Medicine at our clinic left for South Africa to run a clinic which has been having a difficult time. Dr. Netherda is gone for a year. During the last Commission meeting before his leaving, he brought in a report from the CDC which advised people living with HIV to not take a vacation from meds. The nutshell version was a vacation from meds can play havoc with the liver. This was three months ago, I do not have access to that report or a way to contact Dr. Netherda.
I did attend a seminar a few years ago which was presented by Dr. Anna Baylor. Dr. Baylor is the Acting Director of Medicine at our clinic. From her discussion, I remember it was acceptable to take a vacation from meds. As she said, "The worst thing that can happen is your T-cells and VL will revert back to the old numbers."
I want a med vacation in the worst way, I am tired of being sick everyday from the meds, tired of hiding this sickness and my Doctor, Marshall Kubota said no, because of the possibility of developing resistance to the medications.
The reality is, we have three Doctors from the same clinic with different opinions. With your experience in Nursing, you have better access to information, access to reports and have the ability to take the information available and understand what the reports are saying, than I have.
If Dr. Netherda is correct, you could have problems with or lose your liver. If Dr. Baylor is correct, there will be no problems. If Dr. Kubota is correct, you may build a resistance to your current meds. These are all brilliant and dedicated physicians, I'm sorry but I can not advise. I often tell Dr. Kubota that my job is to follow his directions and take those pills no matter how bad I feel. Have the best day
Michael
www.Commission-on-AIDS.org (http://www.Commission-on-AIDS.org)
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Hi Jan...I too am hurt by your news you haven't been doing too well lately and very hopeful it's just a blip on the screen so to speak...Don't know much from drug holiday's, I stopped on my own when I was a bit depressed about 5 years ago but went back OK...Keep us posted dear lady, as you can see so many good folks here care so much about you...And your grand daughter is just precious !!!
Love always, Jody
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Hey Jan,
I don't know what to say, except that it worries me to know you've been in pain. It's times like this we wish we all lived in new zealand. Sometimes nurses, need nursing... I do hope that you can get to the bottom of the increase enzyme results.
Sending you warm hugs and love from just across "the bay". Your granddaughter is beautiful!
love
Matt
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Hey Jan,
Dearheart, I am so sorry you have been in pain. Your liver numbers are worrisome, to say the least.
I know the thought of the STI is frightening in some ways, but I have to agree with the rest. Your CD4s are in a nice place to do this and, as Tim said, you can't live without the liver.
By the way, your granddaughter is enchanting.
I will be keeping you in my thoughts and will be sending copious amounts of positive, healing energy your way.
Let us know how things are going.
HUGS,
Mark
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Hi Jan
Sorry for the current problems you are having. Do you happen to have the rest of the liver function test results (like the total bilirubin and alkaline phosphatase)? I'm also assuming pancreatitis has been ruled out with an amylase or lipase level. It's hard to make sense as to what's causing this, especially since you've been doing so well on your current meds for over a year. Your doc is probably going to have to do a series of other work-ups to figure this out, including imaging tests to rule out such things as gallstones, etc. Regarding the drug holiday, as the others have mentioned, it is most likely a safe thing to do as long as you get monitored closely as to how your VL would trend. If you do decide to take a break, it would be a good time as well to try to get a genotype resistance test when/if the VL gets high enough. Keep us posted.
Gerry
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Hello Jan,
I hope you feel better real soon! What a cute, sweet picture!
Care and support,
Drew
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Hi everyone
I just wanted to say thank you again for your wonderful advise..I have listened and taken it all in and have made a decision..I have decide to do the drug holiday and have realized it's not big deal, I don't why I was so concerned about it.
As for my other problems and my Liver problems I will know more after the 4th of Dec when hopefully I will have some results to give you all.
Thanks again for all your advise, I wish I could thank you all individually..but it would take too long and I have work to do in the paddocks.. :D
Edited to say to those who were concerned..pancreatitis has been ruled out ..Amylase levels are normal and the gall bladder has already been removed.
Love and hugs to you all
Jan :-*
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Dearest Jan,
I'm sorry to hear about this new problem - this is the first I've heard as I managed to miss this thread earlier in the week - been in Liverpool and sleeping loads as well.
You mentioned that your pancreas and gall bladder have been ruled out, but what about hepatitis?
I hope they get to the bottom of all this soon - I hate to think of you having a difficult time. Hang in there hun! I'm sending plenty of love, light and positive energy your way, hope it helps.
Big hugs,
Ann
xxx
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Jan,
you are in my thoughts
((((((((((((((((JAN)))))))))))))))))
Pat
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Hi Jan,
Sorry to hear you are having a few problems at the moment. You seem to be in a great position to try out a drug holiday though. Keep us updated.
Chris
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Hi Jan,
It is good to hear from you. Your strength is within you. I am sending you postive healing energy your way. It comes in waves.
Take care of YOU!
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Hang in there! Keep us posted how the drug holiday goes.
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Hi Everyone
Thank you all for your support and advise..just thought I would give you a quick up-date.
MRI scan turned out fine for a diagnosis (not HIV related) I recieved a couple of months ago..but they decided not to do a liver cut, they are going to hold off to see how my monthly bloods tests turn out first.
I have been off Meds for a week now..so we will see how everything pans out, although my CD4's drop 400+ my % still remains at 59...so I have absolutly nothing to complain about.
Thank you all again for your concers.
Hugs
Jan
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Glad to hear you are doing better Anniebc. Fingers crossed for you.
R
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Hey Jan
My name is Janet,I too have liver problems.Due to diabetes and years of bi-polar meds and deppression pills. I have liver biopsies once a year. My liver doc told me to take meds that I absolutely have to have,and to stay away from alcahol,and to start taking vitamin E.
Well I've been doing that and the numbers have gone down not by a whole lot but he told me my liver is trying to regenerate itself.
So if you do take a holiday try taking VIT-E good luck let me know how you make out.
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Jan,
Glad things are going pretty good! Been thinking about ya and keeping you in my prayers!
Hugs
Teresa
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Jan,
Great! I'm glad everything turned out ok, I was concerned. Enjoy that drug holiday!