I am so depressed - I went out to brekkie with my daughters and realised that not only is my tongue numb, much more numb than it was (it has been slightly numb for a while now) but I have totally lost my sense of taste. I couldn't taste my breakfast, my coffee or my tea, I might as well have been chewing on cardboard. My daughter offered me her coke to try - I got enough of a hint of a taste that I could tell that it was coke, but mostly it tasted like nothing at all.

I am really depressed about this - I have brainstem problems/ cranial neuropathy along with my PN and have a lot of damage to my tongue, swallowing, along with areas of facial numbness plus a mild lower facial drop on one side, but my sense of taste was previously in tact.

I will email my doctors tomorrow - I have just come down from high dose steroids so I guess they will go for some iv steroids. I can't have rituxan yet as my b cells are still very low (as far as I know).

Bugger.

Raglet

I am sorry and hope you get some answers and better times of course ahead.

Thank you Daniella - I am pretty sure this is just part of my cranial neuropathy but it is really annoying to put it mildly. It never occurred to me that this could happen.

Oh well

Raglet

That is terrible.

You know, Biaxin the antibiotic--clarithromycin-- can cause loss of taste. Also using zinc in the nose by spray or swab can kill off the olfactory bulb neurons!

But zinc orally, swallowed has helped some people regain a taste that was lost, if they are zinc deficient.

Have you lost the sense of smell too?

I'd certainly check with the doctor on this to see if some other neuro problem is the cause.

I will first state I am clueless but try to help. Do you think maybe some will return when you are off the steriod for awhile or could be from a med you started or stopped? How long has this been? I understand when more problems happen on top of the already. You are in my thoughts and I hope it gets better soon

thanks guys

I haven't been on anything that I haven't been on a zillion times before - I have been on a course of amoxycillian for bronchitis, fingers crossed it could be that ? I do think that I have got some of it back fortunately, though things do not seem to taste as strong as they used to (eg a sharp strong cheese tastes like a very mild cheese, but at least I can tell it is cheese). I am always on steroids, so that's not going to change anytime soon. Actually I find that only high dose iv steroids (500 - 1000mg) cause problems with my taste, and then it is a horrible metallic taste that I can't get rid of until about five days after I stop having infusions.

I will give it a few more days I think, and if I am still having trouble with it next week I will go see a doctor about it. I am having a weeks leave next week so I will have plenty of time. Actually I am mostly just planning on lying around home, reading, and hopefully catching up on some housework.

cheers
raglet

I looked up Prednisone and one of the many nutrients depleted by this drug is ZINC.

I'd request a zinc/copper ratio when you visit the doctor.
This loss of taste may be reversible.