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Author Topic: Truvada Drug Allergy? Not sure how to explain weird symptoms  (Read 1940 times)

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Offline JackSmith

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Truvada Drug Allergy? Not sure how to explain weird symptoms
« on: April 26, 2011, 09:53:32 PM »
I have an unusual problem (another one since last year!).  I am fairly medication sensitive so I've had a hard time with this in general...and my doc can't usually explain what is up with me.  It's not unique to HIV meds... sometimes I will have paradoxical reactions and overreactions to other drugs. 

Anyway, the point of this post is that I've managed to be on Truvada for a year, but things have been changing lately.  I find myself getting very hot and my pulse starts to race between hr 3 and 9 after taking the drug.  I also just feel uncomfortable all over like I want to curl up in a ball and lay under a blanket (well, sometimes I do...)     It settles down mostly after I take a benadryl...I have complete resolution even if I am not even at the half life.  I told my doctor all this and he thinks, again - I am a strange case.  He said he's ok with me using benadryl until we find something different (which is like an easter egg hunt in a rainforest).  But, he said if anything serious happens then I need to go to the ER and he will just have to take me off (which is my concern due to resistance and my difficulty with other meds)

Have any of you heard of this kind of problem?  The hot / uncomfortable feeling goes on for hrs...and the discomfort is on the level of having the flu - at the peak.  I do not get what is going on...!  When I read reviews of Truvada, they are so positive.  I have been looking into what a "drug allergy" really is and I don't know if I have this or not - he didn't think I did... I have no rash or organ involvement / dysfunction.  But the fact benadryl is working is weird.   Thanks in advance to any thoughts.

Offline denb45

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #1 on: April 26, 2011, 10:26:10 PM »
Hello Jack & welcome I've been on Truvada for the last 5 yrs. I got the same thing when I 1st started taking it, but after a yr. or so, it went away, it will pass, at least that is what I recall 5 yrs. ago. take care, and I hope it works for you, I'm sure there are others on here that can tell you if THIS has happened to them  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline JackSmith

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #2 on: April 26, 2011, 10:32:02 PM »
Dennis, thanks a lot - that is really helpful to know.  I am surprised the truvada / hot / weird feeling isnt documented anywhere.  Can I ask how you managed this for the firs year?   I can get so out of it & uncomfortable I just sometimes need to lay down.  I have a lot much work to do these days, but  it's hard to focus when I feel so crappy.

Offline mecch

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #3 on: April 26, 2011, 10:38:43 PM »
Is there a reason you can't switch to a different combo to see if there is an improvement.
I was allergic to a few combos but finally found one.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline denb45

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #4 on: April 26, 2011, 10:39:21 PM »
Dennis, thanks a lot - that is really helpful to know.  I am surprised the truvada / hot / weird feeling isnt documented anywhere.  Can I ask how you managed this for the firs year?   I can get so out of it & uncomfortable I just sometimes need to lay down.  I have a lot much work to do these days, but  it's hard to focus when I feel so crappy.

I don't know, after 22 yrs and all of the Meds I've taken, I just got used to all of the side-effects, and just rolled w/ them , i never really gave it much though, and didn't really think about it so much as being something strange, keep in mind that some H.A.R.R.T Meds will do different things to different folks. anyhow
again Welcome, and I do hope you hang around, lots of great info here as well as great people who are living w/ HIV/AIDS  your in the right place  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline JackSmith

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #5 on: April 26, 2011, 10:54:27 PM »
Is there a reason you can't switch to a different combo to see if there is an improvement.
I was allergic to a few combos but finally found one.

Well I probably could... but I just have problems with a lot of them... I've been thru a number of them in the past and i seem to be more sensitive than most to the side effects.  I try to get through the adjustment phase but sometimes I never adjust.  So, it's just hard to switch when I don't really react great to things.  And I may be making it more resistant by doing this over and over.  I might have no choice eventually, though.   I wish I could have Dennis' attitude and just roll with it... Drug sensitivity is actually strangely common on my mom's side... not sure what it is about them.  My grandmother would take a tylenol and act like it was the end of the world...now I know she was probably not acting.

What were your allergy symptoms like?

Dennis thanks again for the welcome.  I posted here briefly last year & it was very helpful. It's certainly reassuring to see people who have had 22 yrs & counting and are doing well.

Offline mecch

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #6 on: April 27, 2011, 08:33:38 AM »
As long as you switch following strictly the doctors orders each time, you are not developing resistances.  It usually means the next combo starts the day after the last.
Ma allergies show up on the skin. I had rashes develop and sometimes many months after starting. 

I think both times it was during periods of intense anxiety.

How many combos have you cycled through?

Denb has a point because I do think "reactive" types have to eventually put mind over matter and order their bodies to accept.  I know its hocus pocus,, cause obviously one can't deal if the allergic reaction is so terrible.

Do you have regular access to your doctor, and would switching combos be financially difficult? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #7 on: April 28, 2011, 03:33:39 PM »
  The hot / uncomfortable feeling goes on for hrs...and the discomfort is on the level of having the flu - at the peak. 

I not on the same meds ( I am on viramune + epzicom) and I suffer from time to time from sudden temperature drops . I feel like the body does not self regulate properly. It will last a few days.

It is bearable, but makes me feel miserable (and I know it is not the flue...)

I also had the tachycardia, but recently occured less.

Some people say it can take a year to get fully adjusted.

I am trying my best to endure the situation

So... you are not alone...

Eric

Offline newt

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #8 on: April 28, 2011, 03:59:31 PM »
Truvada, specifically tenofovir, affects your cytokines, part of your immune system, and the like that can cause a "flu" reaction.

A build up of drugs might be the cause, in which case drink more water...(and get your kidneys tested).

I had this to a degree, not as strong as your description sounds. It passed. Strange it was, maybe 6-9 months in too.

- matt
"The object is to be a well patient, not a good patient"

Offline JackSmith

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #9 on: April 28, 2011, 11:16:02 PM »
Thank everyone.  It is really helpful to know you all went through this kind of thing.

Matt - I looked into the cytokine thing just out of curiosity but the article was way over my head.  I couldn't tell if they thought it increased inflammation or not - or if that was even their research question.   It's interesting to note that it would affect cytokines...with regard to responses to other pathogens (especially if it reduces natural response).  However, I have no idea if what those authors were saying that.

I am going for a LFT and kidney tests sometime soon.  The order is waiting - i just need to get there.  

I am actually a little better than when I posted.

Eric - that's interesting you are on different drugs w/ the same side effects. To that point, I initially had the same reaction to AZT as Truvada.  I got hot , shaky, etc... it subsided quickly though but was very bad on day 1.  I wonder how we adjust to all this (and why some dont). Initial Truvada adjustment is now a distant memory - but it effects are creeping back - reason is a mystery at the moment.  Organ issues maybe?  Do a lot of pts on it really end up with things in the black box warnings?  Or is it just a legal thing they are obligated to include?

Meech, I didn't keep very good records about what combos I have tried but my guess is that there's something like of 4-5 meds in various doses and combos.   It is hard to estimate because of all the overlaps.  My doctor is fine...he emails back to me quickly (i dont call there much - email is easier).  He has a lot of patients.  He also understands there is no true answer to most of these issues and a lot of guess & check is part of the game.  

My insurance is a little tricky about switching.  I cannot predict their prices until I call the pharmacy and they run it through.  Usually it's ok - but I haven't pushed the limits yet.  For example, I am not sure what they'd do if you asked for Truvada and its components (as separate prescriptions) in the same month...they might know that a person couldn't take all 3 -- but they also just allow the doctor to write it (the point would be to figure out which of the two is causing the problem).  We're thinking to try this, but I'm just waiting for now & doing some research.  Waiting 30 days in between prescriptions is frustrating...as opposed to paying $900 or whatever.

I also found that as long as I get decent sleep & eat enough protein and vitamins...I seem to be a little better.  Maybe I still have the same side effects but they don't overwhelm me as much.

(edited for typos & fact check - woops!)
« Last Edit: April 29, 2011, 02:55:01 PM by JackSmith »

Offline littleprince

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #10 on: April 29, 2011, 12:42:25 PM »
Actually this probably explains a lot. When I started on Truvada/Kaletra I had a period for a month or 2 of getting chills like a fever was starting sometimes multiple times a day. I also had hives. I put it down to my immune system recovering but possibly it was the Truvada.

Either way it stopped after a while but I was taking Loratadine (Claratyne) daily for about 2 months. I found it better to take it daily at the same time instead of waiting until I had symptoms. That way I prevented them from occurring. Every couple of weeks I’d stop taking the Loratadine and see if the symptoms would restart. If they did I just started the Loratadine again and went for another few weeks.

Offline JackSmith

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #11 on: April 29, 2011, 02:57:25 PM »
Actually this probably explains a lot. When I started on Truvada/Kaletra I had a period for a month or 2 of getting chills like a fever was starting sometimes multiple times a day.

Wow...we should send this thread to Gilead.  I am surprised it's not in the side effects given how common it is with people here.  I thought I was having some unheard of problem until all these posts.  I wonder if it is listed and I just didn't see it.  Well, I'm glad to hear it's not me.

Offline mecch

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #12 on: April 29, 2011, 08:06:28 PM »
Jack Smith - is this your name, or just made up, or in honor of the legendary NY underground filmmmaker?? (taken by AIDS).
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline JackSmith

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Re: Truvada Drug Allergy? Not sure how to explain weird symptoms
« Reply #13 on: April 29, 2011, 08:18:06 PM »
Jack Smith - is this your name, or just made up, or in honor of the legendary NY underground filmmmaker?? (taken by AIDS).

Just made up... I actually didn't know about the real Jack Smith until you mentioned it.

 


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