Can't taste or smell anything!

[MaryBee7]

Joy, it makes me angry for you that rheumy didn't make the referral.  I'm having serious issues with my rheumy...as after so long of all these symptoms, have been diagnosed, and now if I tell him something, for instance, GI problems, he looks at me like I'm living what I've read about SS.  It may be our PCPs are going to be acting in our best interest.  My rheumy co pay is $75 per visit and am lucky to spend 5 minutes with him.  (Sorry to complain).  Back on topic:  my taste level is in the toilet...and it happened relatively fast.  Things that I liked before sort of repulse me now...such as milk.  Smell is decreased but not as badly.  What will ENT do about it?  I would see one if it would make a difference...?

[acer 455]

      Hi Daisy just wanted to know how long you were on the predisone ?   My ENT just prescribed me 30 pils 10 mg  each starting with 4 pills a day for 4days then 3pills for 3days and so on! He thinks it might work for my sense of smell.   I just hope it it works. Does the dosing and the mg seem familar to you ? And what side effects have you been dealing with the medicine?

[Daisy1234]

Acer,

I hope the prednisone does help you, but in my case I was on extremely large doses of prednisone.  I was on 100 mg to be exact because I had serious health issues.  I was never prescribed prednisone for sensory loss of smell or taste.

As I mentioned in my previous post on this thread, I'm not sure if I just was fortunate or not to get my sense of smell and taste back or if it was just coincidence.

In my case, I had alot of insomnia and couldn't sit down and relax and I became a bit manic, cleaning the house like a crazy woman.  I also had some good strong hunger pangs and was more thirsty than usual.

You might wish to google to find out the entire list of potential side-effects with prednisone as the list is long. 

Also, since not all medications affect each person in the same way, it is really difficult to guess how you would be affected by the dose that you are being put on.   Prednisone usage is always very uniquely prescribed for the individual patient and for whatever the symptoms are at the time.  I do hope that it does help you.

Best of luck,
Daisy

[Joy]

What will the ENT consultant do on my first apt/examination over and above getting the background on my medical history. I was wondering what tests he might conduct? I am really looking forward to my apt, I do hope that he can help me. Are ENT specialists familiar with the problems connected with Sjogrens?

I will be taking a list of my problems for him to keep in his records, I think this will help me to remember what I want to say and save us wasting lots of time.

[sassytoo]

I was so excited when I was reading this article and saw that Predisone helped smell and taste, but then I read on.

I haven't smelled for about 4 years now (scary) and my taste buds have almost dimminished.

I get bloody noses almost once a week. I have bruised skin and scales on my legs (from dryness) my lips are always chapped. Nose is always sore. Heck, I could go on and on and I was hoping that I could just go to the Dr. and ask him to ut me on predisone again.
I was on high does after my lung bipsy for six months, but at the time. I wa sworried about wht they would find out. , Not sure if it helped my dry eyes, saliva or not as I said I was so scared about my lungs that I didn't think of anything else.

But now I wish I would of paid attention as the last few months I wake up with either eye not seeing right, it has been blurry and blood shot. I do have the cottage cheese effect in both eyes though.

What will the ENT consultant do on my first apt/examination over and above getting the background on my medical history. I was wondering what tests he might conduct? I am really looking forward to my apt, I do hope that he can help me. Are ENT specialists familiar with the problems connected with Sjogrens?

I will be taking a list of my problems for him to keep in his records, I think this will help me to remember what I want to say and save us wasting lots of time.

[jazzlover]

A neurologist would be your best bet.

[acer 455]

        I dont think a nerologist  works with taste and sme

[slccom]

Hey, everyone, if you can't smell, it is CRUCIAL that you have good smoke detectors! Test them monthly. Make sure they are both ionizing and photoelectric, since one detects smoke early and the other heat. These are combined in  one detector. Your life depends on it!

Hugs, Sharon

[slccom]

Monell.org Chemical Senses Center is the one place that I know of that specializes in treating this. They are in Philly.
Sharon

[gurs]

Its strange though.....I really cant smell, but certain things I can smell really bother me? its like im super-sensitive to them. I notice when My mom was using my shower and brought her own soap, it drove me nuts in the house? I cant taste anything really. I just learned that although its frustrating, its not one of my major issues at the moment. Living with this just like everything else. What can we do. I really do think its
CNS/SS related though. Doc also said its my hormones and menopause.

Gursie

[irish]

I have pretty much had this off and on for years. It is troublesome as I can smell some things, but I can't smell enough to tell if food is spoiled, etc. Other smells will smell "off". I can cook a meal and by the time I am done cooking it I can't stand the smell of it and it will smell so "off" that I can't eat it.

There is a place in the nose where some of these nerves are embedded that control the smell and taste. The neuropathy of sjogrens is the cause of all these issues. I am on IVIG for myasthenia and this doesn't stop the neuropathy nor has taking plaquenil improved the situation. I just have learned to live with the situation. I don't eat much meat anymore as I can't abide the smell. Strange food cravings seem to go with this for me.Irish