I've lost my sense of smell (Norvir side effect?)

[ByTheBay]

I've been on my meds for 7 weeks now, and have seen a big drop in VL (see below) and remain hopeful that I will see an increase in CD4 with my next set of labs.  My HIV regimen is Prezista/Norvir/Truvada taken once per day, always with food, as that is essential for the Prezista to work.  I also take AIDS-OI suppression drugs (Septra/Bactrim/Rifabutin) as my CD4 is low enough to need preventative antibiotics.

I am very happy to report that after about a 3 week adjustment period (headaches, muscle pain, aches) I have adjusted to the meds very well.  I’ve never had any digestive problems (luckily).  I did develop terrible dandruff and dry skin, which has gone away with over the counter dandruff shampoo and skin lotion.  I am not sure this is due to the medications or just normal seasonal dry skin, but it is tolerable.

The one side effect which has puzzled me is that I have almost entirely lost my sense of smell.  I asked at my last appointment and my Dr. said it was likely a side effect of Norvir (I take 100mg once per day to boost the Prezista).  I didn’t notice at first until someone commented about “a terrible smell”  at work (someone left food in their trash over the weekend) and I didn’t smell anything.  I then tried to smell scented candles, perfume, etc. and I can still detect some smells, but I’d guess about 10% of what I used to be able to smell.  I think related to this is that I also notice a change in my sense of taste -- things tase bland.

Has anyone else had this as a side effect, were you or are you taking Norvir?  The patient literature does not say anything about sense of smell side effects.

To be honest, it does not really bother me all that much.  It is amusing more than anything.  If I ever had to pick a sense to lose it would be smell.

Now if Norvir would only give me 6 pack abs, THAT would be a side effect worth having!

[BlueMoon]

I've been taking a daily dose of Norvir for almost two years with no observed side effects, including six-pack abs; but no lipodystrophy either.  The sense of smell is intact, for better or worse.

Good luck with your treatment.  Once the virus is suppressed, the immune system should rebound within a few months.

[mecch]

  I did develop terrible dandruff and dry skin, which has gone away with over the counter dandruff shampoo and skin lotion.  I am not sure this is due to the medications or just normal seasonal dry skin, but it is tolerable.

Can't help you with the smell mystery. Did the doc say it was permanent or temporary.
I can tell you that I had dry skin and flaky hair after starting HAART but the doc said it was NOT dandruf, but a symptom of the immune system adjusting to the decreased viral load. Immune reconstitution inflammatory syndrome (IRIS) - google it. Its goes away by itself. The skin lotion is helpful but you dont need the dandruf shampoo.

[nixsmail]

have been on the same set of meds that you are on, since june this year. haven't noticed anything with sense of smell but have noticed that things just don't have the same "taste" that they did before the drugs and my appetite has been a little suppressed. just my 2 cents worth. hope your cd4 goes up as mine did.

[leatherman]

I remember back when I was taking norvir in liquid form (nasty stuff) that a "change in sense of taste" (http://www.aidsinfo.nih.gov/DrugsNew/DrugDetailNT.aspx?int_id=244) was one of the side effects. I always thought everything tasted pretty bland after that god-awful liquid burned off your tastebuds when it slid across your tongue and down your throat as you swallowed it.. Maybe it was actually an effect from the med itself, as that is still listed as a possible side effect. Since taste and smell are intermixed senses, maybe that is the underlying cause of your sniffer not smelling as much. 

Hmmm? Wonder if things would taste and smell better if I quit taking Norvir? LOL 

[jm1953]

I've been on my meds for 7 weeks now, and have seen a big drop in VL (see below) and remain hopeful that I will see an increase in CD4 with my next set of labs.  My HIV regimen is Prezista/Norvir/Truvada taken once per day, always with food, as that is essential for the Prezista to work.  I also take AIDS-OI suppression drugs (Septra/Bactrim/Rifabutin) as my CD4 is low enough to need preventative antibiotics.

I am very happy to report that after about a 3 week adjustment period (headaches, muscle pain, aches) I have adjusted to the meds very well.  I’ve never had any digestive problems (luckily).  I did develop terrible dandruff and dry skin, which has gone away with over the counter dandruff shampoo and skin lotion.  I am not sure this is due to the medications or just normal seasonal dry skin, but it is tolerable.

The one side effect which has puzzled me is that I have almost entirely lost my sense of smell.  I asked at my last appointment and my Dr. said it was likely a side effect of Norvir (I take 100mg once per day to boost the Prezista).  I didn’t notice at first until someone commented about “a terrible smell”  at work (someone left food in their trash over the weekend) and I didn’t smell anything.  I then tried to smell scented candles, perfume, etc. and I can still detect some smells, but I’d guess about 10% of what I used to be able to smell.  I think related to this is that I also notice a change in my sense of taste -- things tase bland.

Has anyone else had this as a side effect, were you or are you taking Norvir?  The patient literature does not say anything about sense of smell side effects.

To be honest, it does not really bother me all that much.  It is amusing more than anything.  If I ever had to pick a sense to lose it would be smell.

Now if Norvir would only give me 6 pack abs, THAT would be a side effect worth having!

I'm on Prezista and Norvir too. Switched to it a few months ago.  Have had some ongoing sinus conditions since then and have been using some nasal sprays like Ziacam which have somewhat impaired my sense of smell.  But can't attribute anything to Norvir.

If you are using Afrin or something for your sinuses on a regular basis, sometimes that can affect your sense of smell.

Just a thought. 

Good luck.

[veritas]

Evidently, there is a link  between taste and smell with Norvir ,as well as other hiv medications, however not all taking are affected:

"Forty-three patients (21%) reported that medications interfered with their sense of taste, and five (2%) reported that medications interfered with their sense of smell. Seventy-nine (38%) reported that medications taste bad, and 43 (21%) reported that medications smelled bad. Patients could report problems with medications they were currently taking, or medications they had previously taken. The medications which were most commonly listed as problematic were indinavir (Crixivan), ritonavir (Norvir), clarithromycin (Biaxin), zidovudine (Retrovir), didanosine (Videx), lamivudine (Epivir) and trimethoprim-sulfamethoxazole (Bactrim or Septra). Although we did not have information about how many patients had ever taken each medication, it appeared that the number of complaints was disproportionately high for protease inhibitors."

http://journals.lww.com/aidsonline/Fulltext/1998/13000/Taste_and_smell_complaints_in_HIV_infected.15.aspx

v

[leatherman]

Thanks for the link V 
It's always good having some real numbers backing up the complaints

I don't notice the problem with my videx (though it's hard to tell if I would even notice that things taste blander as I've been on some form of videx for a decade or more now LOL); however, I did notice a change when I started and I most assuredly notice when I stopped taking bactrim after a decade that the flavor of things perked up.

[antibody]

you gone smell blind son!

[Grasshopper]

Chances are that the loss of smell and taste is caused by the Rifabutin. If these effects continue or become bothersome, inform your doctor.

A few years ago I was hospitalized with  Mycobacterium avium complex (MAC), was prescribed Rifabutin and also had loss of smell and taste.

Take care and be well

[ByTheBay]

Thanks to everyone for the feedback.  I did not think that Rifabutin might be the cause -- the most noticable side effect from Rifabutin is my urine is now orange, but they warned me about that.  I had assumed the PI would be the cause of the loss of smell.  I hope that I will not be on Rifabutin much longer (as soon as my CD4 goes over 100 for 3 months in a row I can stop it).  Will be nice to know if this is the cause or not -- will update when I figure it out.