POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: markabz21 on January 12, 2011, 04:13:32 pm
-
Hi there,
I was diagnosed HIV+ in August last year and immediately had to start treatment as my CD4 count was 320. I got infected in 2007 from a cheating ex :(
Anyway I was originally placed on Atripla which I used for 2 months and from which I came out in an all over body rash including my face which never went away and to be honest almost looked like leprosy! I didn't actually get the weird dreams side effect from Atripla just the rashes.
However last month my doctor switched me to Isentress and Truvada instead as I thought this would be the best option given that I had only read praises about this combo. Plus I am quite lucky to have been prescribed it as I'm in the UK and its almost never prescribed due to its much higher cost.
However I just wanted to check whether other people are experiencing any side effects from this combo like I am. For instance when I take the morning dose at 9am within about 2hrs of taking it I am so tired I can barely stay awake; and I'm not joking I could fall asleep just from blinking and I cant concentrate in my work sometimes just because I am so tired.
And the other side effect I'm getting are the vivid dreams I expected from Atripla but which I had read little about from Isentress and Truvada. This isn't as much a problem as I actually quite like the dreams! But they occur every night and I can remember everything in detail the next morning.
Has anyone else experienced similar side effects from this combo? I usually take the morning dose on an empty stomach and just with water. Is it better to take it with food? Will this reduce the tiredness side effect I'm getting every day? The evening dose doesn't seem to be responsible for any side effects as I feel perfectly well after taking it and sleep right through to the next morning.
I don't plan on changing combos as I think its bad to change onto my third combo in 4 months so I will be sticking with it however I would like to know whether the tiredness side effect goes away or is there a better time to take the tablets that wont make me feel as tired?
Also on a better note my viral load had gone from 29000 to undetectable and CD4 has risen from 320 to 510 :)
Mark
-
Hi Mark,
First, congrats on your rapidly improved numbers.
I started the regimen in October, so thought I'd send a reply. I, too, take my a.m. dose around 9 am/pm
Only periodically have I experienced tiredness, but I have yet to correlate it with the med.
I have vivid, fun dreams, but not consistently but don't always have clear recall upon waking.
I take the morning dose with food as often as possible. Will this reduce the tiredness side effect?
Try it, maybe you're actually suffering from low blood sugar if you're not fueling yourself with some breakfast.
Regarding the evening dose, I too, feel perfectly well after taking it and sleep right through to the next morning.
Best regards,
Em
-
This may not be helpful but here goes. I switched from Reyataz/Norvir to Isentress (both with Truvada) in October after 5 years of successful treatment. Now that I found out (too late) that Norvir is now available in a form that doesn't need refrigeration, i may switch back. I've had all sorts of side effects from the Isentress.
On the bright side my trigylcerides and cholesterol levels have fallen, but were not dangeriously high before. Of course the bilirubin falls and no more yellow eyes (even a touch). And firmer stools. Now for the sides.
Can't sleep well and take forever to fall asleep (i use valerian root and that helps a bit). I often have vivid dreams. They only really bother me when they are scary (occasional) and I wake up in a panic, exhausted. The worst part is tinnitus (ringing of the ears), which started about 1 month after I started with Isentress and I still have. I hate to sit in a quiet room since it makes me crazy. I notice it at various times, can't pinpoint if it's worse or better at times or why. Also, as you've mentioned, I have had times when I felt exhausted. My sex drive is in the shitter. After 1 drink I feel like I'm high, like taking a couple drinks with a Valium. After 2 drinks I feel like a zombie (can't keep eyes open), and so no more nights out on the town, and I've virtually stopped drinking. Oh, and depression has been a problem. My Doc doubled my dose of Wellbutrin and that helps, but I'm not as "up" as I used to be.
Here's my dilemna: labs are good, still undetectable,and I can't help but believe the neurological effects may actually mean the drugs are working in my brain. I've read that Isentress crosses the blood/brain barrier better than Reyataz. So maybe after 5 years my brain's getting treatment...is that good? Am I blaming the drug and not the HIV? Should I put up with these problems and hope they will go away?
I'm at the point where I am may ask my Doc to go back to Reyataz in February if the side effects don't go away, but can't decide. The Tinnitus is the most frustrating. My doctor has had other patients with this side effect but no advice on what to do about it.
I'd love to hear of others who have had these issues.
-
I have been on Truvada/Isentress and expereinced none of those symptoms. During the first few months I would get a short headache that lasted 20 minutes at the most from Isentress and periodic gas from the Truvada. Sitting here at 6 months I now experience neither. And I was someone who started on Atripla and had to change asap as it would knock me on my ass. I have permanent tinnitus so can't really say it caused it but it most certainly didn't exacerbate it.
Edit: just read the line about you being on Wellbutrin and your doctor doubling your dose...
Wellbutrin Side Effects to Report
There are a number of possible side effects of Wellbutrin that you should report to your healthcare provider. These include but are not limited to:
* Seizures (see Wellbutrin Seizures)
* Suicidal thoughts or behavior (see Wellbutrin and Suicide)
* Anxiety, agitation, or panic attacks
* Hostility or aggressiveness
* Engaging in unusual or dangerous activities
* Restlessness or inability to sit still
* Extreme elation or feelings of happiness that may switch back and forth with a depressed or sad mood
* Other unusual changes in behavior
* Hallucinations
* A fast heart rate
* Chest palpitations
* Difficulty sleeping
* Feelings of internal jitteriness or restlessness
* Signs of an allergic reaction, including an unexplained rash, hives, itching, unexplained swelling, wheezing, or difficulty breathing or swallowing.
Common Wellbutrin Side Effects
Agitation -- up to 31.9 percent of people
Weight loss -- up to 28 percent of people (see Wellbutrin and Weight Loss)
Dry mouth -- up to 27.6 percent of people (see Wellbutrin and Dry Mouth)
Constipation -- up to 26 percent of people
Headaches -- up to 25.7 percent of people
Nausea or vomiting -- up to 22.9 percent of people
Dizziness -- up to 22.3 percent of people
Increased sweating -- up to 22.3 percent of people
Shakiness (tremors) -- up to 21.1 percent of people
Insomnia -- up to 18.6 percent of people (see Wellbutrin and Insomnia)
Appetite loss -- up to 18.3 percent of people
Blurred vision -- up to 14.6 percent of people
A rapid heart rate (tachycardia) -- up to 10.8 percent of people
Confusion -- up to 8.4 percent of people
Hostility -- up to 5.6 percent of people
Irregular heart rhythms (arrhythmias) -- up to 5.3 percent of people
Hearing changes -- up to 5.3 percent of people
-
I have been on Truvada/Isentress and expereinced none of those symptoms. During the first few months I would get a short headache that lasted 20 minutes at the most from Isentress and periodic gas from the Truvada.
My exact same experience.
-
My exact same experience.
Ditto. I don't even get the headaches any longer.
-
I still have a little problem with gas but I have gained 10 lbs.
Billy
-
I'm on I/T and I feel great, no side effects to speak of.
-
Oh, I still have periodic gas but that's a very small side effect compared to other things in life. Anyway, it's NOT like that gas I would get from meds in the 90's where you couldn't hold it in when necessary. There were drugs back then that caused daily, incessant, public farting on mass scales.
-
Oh, I still have periodic gas but that's a very small side effect compared to other things in life. Anyway, it's NOT like that gas I would get from meds in the 90's where you couldn't hold it in when necessary. There were drugs back then that caused daily, incessant, public farting on mass scales.
I remember the old Saquinavir farts - and explosive diarrhea.
I would like to say I don't get gas from meds, but I am not really sure.
I'm over 50, gas comes with the territory. ;)
HUGS,
Mark
-
Thanks for your comments esp to freaky_dream for the Wellbutrin info. I had taken WB at full dose long ago for years and never had these problems, cut it back to half the regular dose for years and now back to full dose (if I remember right that's 150 vs 75 mg). So that's why I don't blame the WB, esp since I needed it raised to combat other symptoms which I thought were neurological (memory/concentration problems).
As I sit here typing in a quiet room and listening to my ears ring, I wonder if their "hearing changes" reported include this, will ask the Doc. As I said, my Doc had told me that ringing was something he had heard of with the Isentress (not sure how common, but common enough not to be surprised).
The only way to be sure is go back to the Reyataz/Norvir and see if these symptoms resolve, so I may try that in Feb...will keep you posted. He also had said going back was possible. One of my biggest problems was lack of transportability with refrigerated Norvir, which is apparently now solved with a non-refrigerated version.
Sigh...I wish my experience with this was a great as everyone else has reported! :)
-
As I sit here typing in a quiet room and listening to my ears ring, I wonder if their "hearing changes" reported include this, will ask the Doc. As I said, my Doc had told me that ringing was something he had heard of with the Isentress (not sure how common, but common enough not to be surprised).
I'm interested in what you learn because as I sit here typing not in a room, but with the TV on, the ear ringing competes and wins. If there's a correlation with the Isentress, and not a damn thing to be done to resolve it, it's time to use a white noise machine, I suppose. But, what if it's age-related or a combination? I'm not sure that can be assessed.
-
As I sit here typing in a quiet room and listening to my ears ring, I wonder if their "hearing changes" reported include this, will ask the Doc. As I said, my Doc had told me that ringing was something he had heard of with the Isentress (not sure how common, but common enough not to be surprised).
I'm interested in what you learn because as I sit here typing not in a room, but with the TV on, the ear ringing competes and wins. If there's a correlation with the Isentress, and not a damn thing to be done to resolve it, it's time to use a white noise machine, I suppose. But, what if it's age-related or a combination? I'm not sure that can be assessed.
I had ringing in one ear before I started meds. My ENT said it was from age, too many nights at the Disco (thank you Donna Summers) and possibly a chronic ear/sinus infection. Thankfully after starting I&T the ringing stopped so I believe my problem was from an infection that would not clear with my pre-med weaken immune system.
Billy
-
Thanks for that post BillyB. (Meant to write wasn't typing in a quiet room)
I'm going to schedule an appointment with an ENT pronto. Maybe there's something that can be done.
-
Had the ENT visit today. She thinks it's likely age-related. My hearing was tested and I'm in range of normals with a dip (still in the normal range) which she suspects accounts for the ringing. She said it's a matter of psyching yourself out and using sound masking (white noise). I was so hoping something could be done to make it stop. Ah well, I can be grateful for the level it is and not worse.
-
I just several weeks ago started having problems with Isentress. It does make you so tired you can barely stay awake.
My other problem may or may not be associated with Isentress but I can't quit sweating at night and when I quit taking it the sweats went away also A year ago or so i was prescribed Isentress and I twisted my ankle and while in emergency room I couldn't urinate so they put a catheter and bag to collect the urine so my blladder would not blow up.
I now can't stop urinating and hold at all any more, I quit the Isentress and it stopped the first night then came back, I called my DR like it said to do if that happened with Isentress. His response was I have other patients to work on and hung up on me.
Needless to say i now have a new HIV DR and he is wonderful he got me in within three days and I saw him today as a matter of fact Feb 2 2011 and he was so thorough with me unlike the other DR and prescribed me two meds to try and fix the problem wether or not it is the Isentress or not.
But I will tell you i will never take Isentress again. I think it is what started the problem a little over a year ago when they had to put the catheter and bag inme and carrying the bag around and they never changed the catheter for over a month when it started leaking around my penus. When they pulled it out it had so much crud on it and infection it very well could have started all this mess I am in now not being able to quit urinating all night and sometimes in the day.
Thanks for reading this not so fun story that is fact not fiction.
-
Have you been referred to a urologist? What a mess you've had to deal with. Reads as if it could be more catheterization-related than Isentress.
I, too, have been dealing with fatigue recently, but no correlation yet to the Isentress. Just had thyroid testing--no problem there. Hopefully, it's resolvable and not med-related.
-
I have been on Isentress and Truvada for several months and have had no side-effects at all. I really appreciate it alot more compared to my previous regimen where I had daily immodium emergencies.
-
I have been on Isentress/Truvada for 6 months. The first couple of months I was so tired that I would literally just pass out where I was, sitting, standing, driving. It was a rough couple of months, but it passed. Other than that I have not had any real side-effects at all until the past couple of weeks. I was actually timid to tell anyone about this, but here it goes.... I am having vivid hallucinations at any given time day or night. It really messed with me at first. I started seeing people that I didn't know in my bedroom at night. I can describe these people in detail. It was scary! After I realized what was going on, it wasn't so bad. For example, I saw a black and white chihuahua (is that right?) in the back of my pickup this morning. I have researched and only found that 0.21% of people taking truvada have hallucinations. Wasn't I lucky.... So I guess I will be calling the doc soon. I'm really glad that there are people talking about these things, because I was too embarassed to mention it to anybody for a good while.
-
I've been blessed to have been on this combination for a year. Previously I was on Reyataz/Truvada/Norvir and it worked, but I had the yellow eyes, and was generally tired, tired, tired and even tired. I switched and WOW what a difference. If my energy level was 100 before HIV, and 20 on the combo above, it's now closer to an 80-90. I do get the headaches sometimes, and even when I was negative I was gassy, but MUCH MUCH less on this new combo.
My VL is undetectable, and my T-Cell count is over 1000 as of 6 months ago (from a low of around 300), and even my CD4/8 percentage reached 35%. I don't know if those numbers will hold (my appointment is next week) but I gotta say it... it's been a great combo for me.
-
My VL is undetectable, and my T-Cell count is over 1000 as of 6 months ago (from a low of around 300), and even my CD4/8 percentage reached 35%. I don't know if those numbers will hold (my appointment is next week) but I gotta say it... it's been a great combo for me.
A2Z: Are you stating your T-cell count was at 300 in the timeframe of having started I/T? Thanks. Em
-
Update on my posts. Horrible last dr visit. Not only are my liver enzymes up, but y GFR is down and creatinine up, so bad kidney effects too. Switched to isentress in october. Still have the ears ringing. Tomorrow i switch back to reyataz/with norvir tabs (not the gelcaps i hated to refrigerate). My doc says probably another 2 weeks for ears to stop ringing, will report back. hope liver and kidneys improve, I'm told these are quite useful to have operational...
To top it off, diagnosed with bad osteoporosis. Really frustrated with all this. Only 49 and my verterbra can break if i twist it wrong?? :(
-
Hi SF
Sorry you're going through challenges. Does your doc recommend you do something for the osteoporosis?
Let us know how going back to your prior regimen goes.
Em
-
Update on my posts. Horrible last dr visit. Not only are my liver enzymes up, but y GFR is down and creatinine up, so bad kidney effects too. Switched to isentress in october. Still have the ears ringing. Tomorrow i switch back to reyataz/with norvir tabs (not the gelcaps i hated to refrigerate). My doc says probably another 2 weeks for ears to stop ringing, will report back. hope liver and kidneys improve, I'm told these are quite useful to have operational...
To top it off, diagnosed with bad osteoporosis. Really frustrated with all this. Only 49 and my verterbra can break if i twist it wrong?? :(
Sorry that you are not tolerating your meds. The Truvada is cleared by the kidneys and causes problems in a small number of people. The Isentress is cleared by the liver (according to my IDS). Are you going to replace the Truvada with something else?
Billy
-
For now, I'm going back to Reyataz/Norvir for the Isentress. After a genetic mutation test for hyperallergy potential, I'm supposed to switch from Truvada to Epzicom, to get rid of the tenofovir.
As for the osteo, i'm supplementing with Calcuim/Vit D and just started Fosamax. Going to have my doc look at parathyroid problems, but I don't have the elevated Calcium to indicate that. I'm annoyed, since I don't smoke (something the research studies say affect bone density) and I excercise a lot. Now the books I read say with lumbar spine reading of -3.7 (37% bone loss) I can't even do sit ups....
I have to laugh at the studies that say Tenofovir can head off HIV in non-infected people...imagine putting someone on that for years to prevent HIV infection and trade off bone damage, kidney damage, etc... But to be fair, I've read some studies that blame bone loss on Tenofovir and others that don't.
-
For now, I'm going back to Reyataz/Norvir for the Isentress. After a genetic mutation test for hyperallergy potential, I'm supposed to switch from Truvada to Epzicom, to get rid of the tenofovir.
As for the osteo, i'm supplementing with Calcuim/Vit D and just started Fosamax. Going to have my doc look at parathyroid problems, but I don't have the elevated Calcium to indicate that. I'm annoyed, since I don't smoke (something the research studies say affect bone density) and I excercise a lot. Now the books I read say with lumbar spine reading of -3.7 (37% bone loss) I can't even do sit ups....
I have to laugh at the studies that say Tenofovir can head off HIV in non-infected people...imagine putting someone on that for years to prevent HIV infection and trade off bone damage, kidney damage, etc... But to be fair, I've read some studies that blame bone loss on Tenofovir and others that don't.
My IDS also did the genetic mutation test in case the Truvada did a number on my Kidneys. I did not consider Reyataz/Norvir because of the refrigeration issues but that now has been fixed. It is a wonderful thing to have a few combos to choose from if one is causing problems.
Billy
-
Yes, thank God no more refrigerated gelcaps. Made it a pain to travel with hiv meds in a warm environment.
-
Update on my situation for anyone following this thread. I went back to Reyataz/Norvir, instead of Issentress, in late Feb. I am delighted to report that as of mid-April my Ast/agt readings were back to normal, so no liver issues. Better, my creatinine numbers were back to normal so no more kidney worries. Boy did I have a scare here.
To recap, while it kept my viral load undetectable, with Isentress I had horrible dreams, inability to sleep, huge loud ear ringing problems, and the kidney/liver problems. ALL OF THIS WENT AWAY when i went off Isentress. I am SO happy. Obviously I had many bad reactions to this med.
As of last week, I switched the Truvada to Epzicom, hoping getting rid of Tenofovir will help my bones improve as I was diagnosed with Osteoporosis. So far no discernable side effects from the Epzicom.
-
This is good news to read, SF!
-
as anyone experienced any mood changes or depression with leg cramps or a numbness in one leg while taking sentries and truvada? been on this combo for 5 months
-
I made the switch from Atripla to Isentress/Truvada almost a month ago. So far so good. However, there is one side effect that really troubles me......gas!!! I take my first does around 7:00 in the morning and take my second dose with truvada around 7:00 at night. Usually around the evening time, I have this terrible gas. I've noticed that some days aren't quite as bad as others. I'm not sure if this will eventually settle down as time goes by or should I check in with my doctor this week. Let me know your thoughts or experiences.....many thanks!
-
I made the switch from Atripla to Isentress/Truvada almost a month ago. So far so good. However, there is one side effect that really troubles me......gas!!! I take my first does around 7:00 in the morning and take my second dose with truvada around 7:00 at night. Usually around the evening time, I have this terrible gas. I've noticed that some days aren't quite as bad as others. I'm not sure if this will eventually settle down as time goes by or should I check in with my doctor this week. Let me know your thoughts or experiences.....many thanks!
If my experience is anything to go by, it settles down.
-
sfpvguy41 I had to go onto fosamax as well and I am only 26!! I take the once a week 70mg tablet. My spine reading was -3.7 and -3.1in the hip. I had another bone density scan done after 3 months and was up to -2 and -1.7 so I guess the alendronic acid is working.
However it is such a pain to take as you cant take it with other meds. I take it every friday and it means I need to wake up 1 hour early just to take it before my morning isentress. A good hint it to take it just before you'll be doing something where you will be standing up for at least 30minutes as your not supposed to lay down or sit down for up to 1hrs after taking fosamax...so that means each friday I am extra super clean after a 1hour long morning shower!!
Also I read some research that shows that long term use of fosamax can actually lead to reduced bone density if used over the longer term i.e over 3 years. I will try and find the link for this if anyone is interested. I plan to stay on it for a couple of years and then just keep taking cocalciferol tablets instead afterwards.
-
sfpvguy41 I had to go onto fosamax as well and I am only 26!! I take the once a week 70mg tablet. My spine reading was -3.7 and -3.1in the hip. I had another bone density scan done after 3 months and was up to -2 and -1.7 so I guess the alendronic acid is working.
Sorry to hear this Mark. But the #s you refer to seem almost impossible...in only 3 months to go from -3.7 to -2 on a DEXA scan ? Bones dont change that fast! Since both changed so much, I'd question the validity of one or the other test. That's why many only go once a year for this test, but from what I've read and my Dr has said its at least 6 months to show a change, and then a 10% difference would be a lot. Your new numbers are out of osteoporosis range.
Hopefully it was your first test was wrong, and you're ok... Mine was -3.7 on lumbar and after treatment on many things, including Fosamax, it went to -3.3 in 3 months, and I was happy...except the pelvic bone got worse. :(
If you haven't already, talk to your doc about getting off truvada (tenofovir is the suspected culprit), I went to Epzicom and my labslast month were great. You need to supplement with Calcium, Vitamin D and magnesium. Sometimes you can find all 3 together in bone pills for old ladies like us. I am also trying strontium supplement, it complements Fosamax and is supposed to actually build bone, and is the preferred treatment in the UK. google is, it's an inexpensuve supplement int the US.
good luck!
-
I think I am in a slightly different situation I guess as my bone density loss was more temporary as before I was diagnosed with HIV I was taking high doses of hydrocortisone and tacrolimus...yes ironically to surpress the immune system whilst I was also unknowingly HIV+!!! And my bone density dropped so much because of the immunosuppressants and steriods I was taking. At the worst point I could barely stand up if I was sitting on a seat or run at all! I once even ran across the road as the light changed and fell but was unable to stand up due to low bone density and literally had to drag myself along the ground to the kerb!! And in typical UK style nobody helped me up!!
Then when I was diagnosed with HIV last year I had to start meds right away which had a bad reaction to the drugs I was already taking which caused cushings syndrome to suddenly form and which lowered my bone density even more.
However I was quickly weaned off the hydrocortisone and my bone density increased rapidly after then. I was also changed from atripla to raltegravir and truvada to stop interactions which would have caused more bone density loss which I guess also enabled rapid bone density gains. Im still taking alendronic acid though to improve things further but I think the rapid gains I had happened due to coming off the hydrocortisone and lowering doses of tacrolimus whilst also changing HIV meds. Im still pretty young as well and new to HIV meds so I guess that might have also factored into rapid bone density changes as well.
-
Wow what a story I hope you are doing better, that's really incredible.. i just saw a rheumatologist who said its important to use the same DEXA scan machine for comparative results so I'll have to check again on the same machine in a few months.
Good luck.
-
I wanted to post week's ago to this thread but somehow or other missed the register link :)
I switched to Truvada/Isentress about 8 weeks ago after being on Atripla for several years.
The reason?
As someone else mentioned Immodium was my friend on Atripla!
Miraculously within days of the change all my digestive issues stopped - yay!
So far so good my numbers are all staying the same but here comes my question. (I did for the first 6 weeks have terrible fatigue and felt like I was stoned most of the day - luckily that suddenly just seemed to have stopped.)
The other side effect that I have is dry mouth.
It started with feeling like I just wasn't making as much saliva anymore and now it's changing to a more mildly uncomfortable feeling like I have taken antihistamines or something. I am trying to drink more water and stay more hydrated as much as possible but it doesn't seem to help.
Has anyone else had a dry mouth side effect from Truvada/Isentress and did it lessen or go away over time?
-
Max, Thanks for your post and to everyone for contributing to this topic. 5 months ago I switched from Atripla to Isentress/Truvada. I had been on Atripla for four years. I did have digestive issues while on the Atripla but with daily metamucil and a dairy-free diet it was much improved.
Last spring I decided to switch off of Atripla because I wasn't sure if it was having side effects or if I was just experiencing my normal anxious self. (I have PTSD and have managed an increased level of anxiety for most of my adult life.)
After reading all of these posts, I think the switch to Isentress/Truvada was a big mistake. My side effects have actually increased over the last few months with these new meds. They include: dry mouth, extreme exhaustion, difficulty concentrating, a general ache all over my body (despite yoga as usual 3X per week), hot flashes, headache, loose stool, extreme mood swings, and - worst of all - insomnia. The insomnia has gotten so bad that I cannot stay asleep sometimes even on an ambien and two tylenol PM. I rest all weekend and still feel exhausted at the start of my week on Monday.
I feel like a total mess. All these side effects combined have actually made me worry if I am having early signs of a mental illness BUT I don't think so... the level of exhaustion that I am experiencing would make anyone think/feel like they're crazy. Just writing this post makes it clear to me I need to switch back to Atripla or try a third option. I am embarrassed to admit that I didn't really have any major issues with the Atripla, just a subtle feeling that maybe i'd be better on a different med. Good old school curiosity. These meds are nothing to play around with as I am discovering. Will talk to my doc later this week and get off these...
Any feedback is welcome.
-
Hey Yogaholic - sorry to hear about your side effects - it sounds like you most definitely have to switch...
Other than the dry mouth - the only side effect I had was the exhaustion but like I said - it suddenly stopped.
If I have to choose between dry mouth and loose stool - I'm picking dry mouth!
Let us know what happens.
Also - I am sure others would not like what I am about to say...
But - when I did have the huge exhaustion with Isentress - I got this big work project and I knew I wouldn't make it through it AND be exhausted the entire time - so I went off my meds for 5 days.
It was when I went back on them that the exhaustion miraculously did not come back AND my numbers 2 weeks later were the same.
I wonder what the alternative to Isentress is?
Because I think after the new year I'm going to try whatever that might be.
-
Update: Max and everyone who read my post. I have been back on Atripla for a week now - after 4 months on Isentress/Truvada. Within 48 hours I was back to my old self: my anxiety went down, my depression subsided, diarrhea abated and I started sleeping better. The doctor who switched me back to Atripla was pretty hard on me, saying, "I hope you learned your lesson." At first I was taken aback but now I appreciate his tough love response. This med change really screwed up my brain and sent me into bad side effects. These drugs are not like changing from Tylenol to Ibuprophen. LESSON: Don't change meds out of curiosity.
I also switched from Ambien to Lunesta which was a dramatic change. Until the Lunesta I had forgotten what a good night's sleep was like - for almost four years.
-
What did your doctor mean by "I hope you learned your lesson"...? It comes across as an "I told you so" from a parent. In my opinion, your doctor should be working WITH you, willing to listen to your questions and concerns (no matter how inane), and help you learn to deal with the disease. I'd assume you had good reasons for desiring to switch medications in the first place, otherwise such a change wouldn't have happened. Regardless, it was your decision, and you ended up needing to switch back. But such a dismissive or authoritative response from a doctor shouldn't be tolerated, and I most certainly would not accept such comments from someone who is supposed to be a "care giver." That'd be a bit STRIKE ONE in my mental playbook, and three strikes and you're out!
-
Yeah - I have to agree.
The fact is - I am doing better on iSentress/Truvada than I was on Atripla - if I had stayed on Atripla I still wouldn't be having a sex life -
so - your doctor saying - 'i hope you learned your lesson' - well - i find that to be really condescending.
Ya know - they don't have to suffer the side effects you do - so trying making a change to have a better quality of life is worth the gamble in my book.
-
Thanks for posting all of your experiences with I&T - I'm trying to educate myself (like everyone else here) and your stories are quite informational.
-
Update: Max and everyone who read my post. I have been back on Atripla for a week now - after 4 months on Isentress/Truvada. Within 48 hours I was back to my old self: my anxiety went down, my depression subsided, diarrhea abated and I started sleeping better. The doctor who switched me back to Atripla was pretty hard on me, saying, "I hope you learned your lesson." At first I was taken aback but now I appreciate his tough love response. This med change really screwed up my brain and sent me into bad side effects. These drugs are not like changing from Tylenol to Ibuprophen. LESSON: Don't change meds out of curiosity.
I also switched from Ambien to Lunesta which was a dramatic change. Until the Lunesta I had forgotten what a good night's sleep was like - for almost four years.
That doctor sounds like an ass for saying that.
Furthermore, by the way, you are the REVERSE of the general rule - lots of people go OFF sustiva onto other HAART because of anxiety and depression linked to sustiva.
So the doctor is a double ass for thinking there is a lesson to be learned from your unique experience, and he(she) knew it ahead of time...
-
Hi,
I switched from being on Atripla to I/T two days ago because of the CNS side-effects that was making my depression/anxiety disorder worse.
I chose I/T because of the low side-effect profile and I didn't care about taking meds twice a day.
I was off Atripla for 2 days before I started I/T and those 2 nights I felt so good and slept so well.
The day I started my new regimen, I was so nervous about it and I'm afraid I'm just becoming phobic of HIV drugs. It gives me such panic/anxiety and I worry way too much about all the potential side effects that could happen and I read everything I see about the side-effects of drugs online and get myself all worked up.
So the first day I took it, I just felt a little tired and of course still anxious waiting for anything to happen (life threatening rash, kidney/liver failure, CSN symptoms) but It was OK the first night.
The next day I got up and took them and I was still panicky, dizzy and lethargic.
Last night, I took them and I had palpitations all night and couldn't sleep a wink.
I know insomnia is one of the side effects but I don't think that is accompanied with heart pal pations and anxiety??
God I'm a mess and sometimes I wonder if being on these drugs is worse than death (for me) Whats really weird is I've been living with this shit for over 20 years now and still have so much stress around it.
-
Hey there cjmchgo,
I'd like to chime in with a boost of assurance for you. I have been on T&I now for 4 months (first meds) and it has been a breeze. Aside from shutting off my 9am and 9pm IPhone alarm reminder, they are of no inconvenience or side effect and my labs show they are really working well. The first few days, felt a littel odd, dizzy and nauseous, but it soon passed.
About your phobic thoughts - maybe re-framing thinking patterns is a strategy to try. I think of the three pills as my soldiers; fighting with me and for me, not a poison against me...try it and see. In the meantime, breathe - you will be just fine!
-
Thanks Cojo.
I'm glad you're doing well on I/T. I read some earlier posts about you having some issues earlier on and it sounds like they have all cleared up.
My doctor thinks much of my symptoms/side effects are non HIV-drug related and more anxiety/depression.
I think he’s right that I have anxiety/depression issues but I know I feel certain side-effects from these drugs. And for some reason when I feel the effects from these drugs it makes me so depressed and not feel like it's worth living/feeling like this the rest of my life.
Today I got up and took both pills at 8am and by 10am I started feeling like I was doped up, extremely fatigued, dizzy, lethargic, anxious and almost like my brain was numb and I couldn’t concentrate. It was a very uncomfortable feeling and made me feel like I was going crazy. It’s now 330 and that really uncomfortable feeling has past and now I’m just tired and want to go to bed.
I know I’ve only been taking this new regimen for 3 days and I’m going to give it a couple of weeks at least to see if it gets better but I certainly can’t feel like this every day and function at work and school.
My doctor gave me a script for Prozac and I’m going to start today to see if it stops some of these panic attacks and relieves some of my depression. This could not have come at a worse time; I have to go back to school Jan 23 (2 weeks) for my final semester of school before graduating in May.
Cojo, again, thanks for your support and it gives me some hope to know you’re doing well.
Craig
-
Hi Craig,
Couple of things come to mind:
The symptoms you are talking about ALL sound like anxiety symptoms. I am not a doctor, but I make this statement out of my own experience. I have lived with Generalized Anxiety Disorder for my whole life. In my 20's I finally sought help. Using antidepressants (which are also anti anxiety in nature) changed my life for the better. Finally, with the help of these soldiers, I was able to experience life as a " normal" person could. Everything wasn't rooted in catastrophic thinking, the million what ifs about all that could happen, but rarely, if ever did. I have been on Cipralex (Lexapro) in USA for a decade now and it really helps...so....
GO FOR IT! Remember that unlike a Tylenol, they take weeks to kick in so be patient with the process and yourself. Sometimes, first SSRI isn't the best match; kind of trial and error until you find the right one - and you will.
Can I suggest you pick up some books on mindfulness body stress reduction (MBSR) asap. John Kabat-Zinn (sp?) is the guru and it really does make a huge difference when practiced. Books are in most major retailers. In the mean time, HANG IN THERE, you are going to land on your feet and YOU will be solid and strong as you are now, you're just not feeling it. Joe
-
I appreciate your kind words Cojo. Anxiety can be awful and create so much misery in one’s life... It sounds like Cipralex has really worked for you. I started Prozac (fluoxetine) 3 days ago after seeing a psychiatrist. Of course, I obsess about all the possible side effects so even taking prozac, is making me worry about drug interactions with my current HIV therapy and if the side-effects I'm feeling are from the new HIV treatment or the SSRI's or is it just my own thought causing everything I’m feeling. I think it's a vicious cycle of fear and panic which is causing most of my physical symptoms (increased heart rate, derealization feeling, and loss of appetite, feels like I have a cap or numbness around my head at times, dizziness, crying jags and fatigue.) I mean, all these feelings and symptoms sound so much like anxiety. I guess for me, because I’ve been living with HIV so long (20 years) I think I’m getting close to the end of my rope. I know that is probably not true because of all the newer/better treatments that are now available but for some reason during the first 17 years after being diagnosed it wasn’t so bad. I wasn’t on meds because I was a slow progressor and I didn’t think about HIV every day. Now, that I’m on meds it’s almost like I’m newly diagnosed all over again with a lot of fear.
I’m going to Barnes and Noble (bookstore here in the US) and look for John Kabat Zinn. I’ll let you know. Thanks again Cojo.
Craig
-
Hi started on Isentress, Truvada, Kaletra and Dapsone all at once nearly 3 months ago.
The first 2 weeks were a roller-coaster while my body adjusted. I was also coming from very low (10) cd4 count so a lot of the 'side effects' could well have been my immune system starting to reactivate. The thing that kept me pumping along during that first 2 weeks was knowing that if things got really bad I could see my Dr again for a change.
Anyway I persevered and the symptoms pretty much went away after 12 or so days, apart from some occasional abdominal cramping that I can medicate for if required. If you can tolerate it Isentress/ truvada does a ripper of a job of hitting that viral load and giving a boost to the cd4's. Not all medications are equal... there can be specific reasons that a Dr will prescribe one combo over another, so it's worth asking why a particular combination. In my case part of my pill regime is based around effectiveness on hitting a co-infection (KSHV). If side effects persist see your Dr again before making hasty decisions.
I do have very vivid dreams, but I've absolutely been enjoying those - at least my sleeping self gets to star in porn movies! OMG did I just share that? TMI!
take care all
-
I have had HIV for 24 years. I have never been able to tolerate a drug regimen for more than 1 month. I started Truvada and Isentress 6 weeks ago. The only side effect I have is I sleep longer and harder, apparently I walk and talk in my sleep. Otherwise this is the best combo ever for me. I was at 18 t-cells and a viral load of 440,000. Now I am at 198 t-cells and viral load undetectable for the first time in 6 years.
-
Hello All,
Well, after two years without any real problems with I&T I had my first vivid/crazy dream last night. I could not find a phone # and I kept looking for it over & over in all the phone books that I kept pulling out of cabinets and bookcases. In case anyone is wondering, I only have one phone directory in my home.
I know that some people have dreams on this combo but I have been taking a lot of seasonal allergy meds lately so I think that I may be a little jacked up on them.
Billy
-
Didn't you ever have crazy, vivid dreams before you ever went on any HIV medications? I did.
-
Didn't you ever have crazy, vivid dreams before you ever went on any HIV medications? I did.
Hi Miss P,
Only "wet ones" when I was a teenager.
Peace,
Billy
-
I have been on this combination for two years. As soon as i was diag. because my cd4 was like 50, and very sick
my cd4 has stayed in the 220-280 range for the most part I think a 31 %
Being how bad I felt before I started meds, I cant say I have any negative things to say about them. The only troubles I seem to have is joint pain in knees,feet. I dont know if thats age,status, or meds related
-
A2Z: Are you stating your T-cell count was at 300 in the timeframe of having started I/T? Thanks. Em
Yup 312 was my (known) nadir.
-
I have been on Truvada, isentress, prezista and the dreaded norvir for 8 weeks, I have constant pain in my butt for the last two weeks whenever I sit down, and I bring a cushion to work to sit on. I don't know if it is something to be concerned about, I am back at the gym and working on it, but I am so tired all the time. I had a difficult seroconversion and was started on meds before I had turned western blot poz. I had a viral load of 11,000,000. Anyway, I live far away from family and friends and feel so isolated, like if I have to be in constant discomfort, what is the point, and I am not a quitter, just my life level is so low now, and the doctors say to wait 3 months. Anyway, maybe the muscle shoulder pain, butt will end!
-
If you are as tired and in pain as you are stated why are you going to the gym? If you are that bad off then take some time off from working out. The gym will still be there once you have more energy.