Author Topic: Taste Loss please help  (Read 18539 times)

kimberly64

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Re: Taste Loss please help
« Reply #75 on: March 30, 2014, 06:30:54 AM »
Stillinshock,
When you lost your taste did you have like snippets? What I mean some days you could taste some things okay but not great and then hours later completely gone again.  Each day is up and down.  Somethings I cant taste at all, some things I get a hint on the first bite only.  Is this the best it gets? Do you have greatly diminished saliva?  Did Evoxac work better after a few months and taste got bette Thanks.
Kimberly
« Last Edit: March 31, 2014, 05:28:49 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

stillinshockwithsjogrens

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Re: Taste Loss please help
« Reply #76 on: April 05, 2014, 12:38:00 AM »
Kimberly,

Yes, once in a while I would be able to smell and taste something, then it was gone. Very frustrating. I had and have greatly diminished saliva.  I have side effects on Evoxac, so only take it on occasion, not regularly.  I do take it when going to bed. 

I personally don't think one thing helps.  I think time, not obsessing about it, yet doing everything possible to treat the inflammation, helps.  It took a long time for me.  Today, I am still dry, but can taste and smell pretty darn well.

kimberly64

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Re: Taste Loss please help
« Reply #77 on: April 05, 2014, 05:47:27 AM »
Stillinshock,
Do you think a drug your are curently taking helped your taste?  Because that is the main reason for no quality of life for me on top of everything else it just makes me want to give up.  What did you start taking or do when noticed the taste return. I am just so depressed over my life right now this affects my family and me so greatly.
Kimberly
« Last Edit: April 05, 2014, 06:53:00 AM by kimberly64 »
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anita

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Re: Taste Loss please help
« Reply #78 on: April 05, 2014, 06:52:20 AM »
I don't see any direct mention of seeing a doctor SPECIFICALLY for this...has this happened?  If so what did they say or suggestion? 

If not, you have 2 choices...to suffer or get up and out to get an answer.  You should start with an ENT and then neurologist.  But you need to provide them details of exactly what was going on and how this started, medications taken at time, etc.  They will NOT be able to walk in the room, look at your mouth, and, say "who I know why and here's how to fix it".  They have to have an idea of how this began...in detail.  Sudden or slow over time, one side or both sides, drugs taken right before, etc....things like this to HELP him HELP you.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

kimberly64

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Re: Taste Loss please help
« Reply #79 on: April 05, 2014, 07:03:32 AM »
Anita,
I have greatly diminished saliva al of my main glands were hit.  It hit me overnight and I was taking no drugs before I got ill to clear this one up right now.  I am 49 years old was happy and enjoying life until first I noticed diminished taste and then my mouth went dry  then my eyes, nose and sinuses.  Now I have only snippets of taste.  Doctors I have seen say the taste goes with the disease.  The drugs I take now are listed.  I am helping myself but doctors dont know.  Thank for your reply.
Kimberly
« Last Edit: April 05, 2014, 07:05:26 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

anita

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Re: Taste Loss please help
« Reply #80 on: April 05, 2014, 08:38:53 AM »
As you have seen so many times on this board...people see doctors that are NOT helpful and have to go see someone new.  This is what you need to do.  Just because one or two say something, doesn't mean others can't help you.   Loss of taste CAN occur with Sjogren's, but IF it happens it's usually after years of damage, not before the dry mouth even starts.

You deserve to be listened to and treated by a GOOD doctor who specializes in this problem.  You should NOT have to suffer like you obviously are.  Please see an ENT or neurologist that has dealt with this before.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

kimberly64

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Re: Taste Loss please help
« Reply #81 on: April 05, 2014, 08:48:03 AM »
I am scared  I dont know where to turn.  I feel so hopeless because others say they have loss of tatse and its not from years and years of damage.  I am so confused and dont know what to do, please someone help me understand that has a taste loss that this like my 2 ENTs have said and a Rheumy is from the diminished saliva.
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

cccourt1942

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Re: Taste Loss please help
« Reply #82 on: April 05, 2014, 09:47:42 AM »
Hey dear kim,
Most of us (and those with other illnesses) get caught in the first two stages of grief;   denial and anger. Each persom goes thru each stage.   Some in a day, some in two days, some a week or month, etc
   Some get stuck in one or the other of the 5 stages.   There is NO set time to work thru a stage.  Everyone is different.   When one asks of God or others over and over....
....and does not like th answers being given,  that signals an inability to go on to the next stage.   Perhaps yoi could read a bit by elisabeth kubler ross...even on the net.  It moght help
   Just a suggestion.  Hope you have a relaxing day
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

kimberly64

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Re: Taste Loss please help
« Reply #83 on: April 05, 2014, 02:47:11 PM »
CCcourt,
I may have to check out her books,some sound quite interesting and maybe will be indeed helpful.  Please understand that tatste loss on top of all the dryness and discomfort is a huge quality of life issue.  I am grieving?  Yes.  Do I believe that I did something or took something to cause this to happen? NO. If some of you haee lost tatse with minimal saliva and had it return with specific medications or length of taking these medications or specific suppliments that is what I am looking to find out from people.  Thanks for the advice though.  It is greatly apprecated as always. 
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

DryGuy

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Re: Taste Loss please help
« Reply #84 on: April 05, 2014, 03:31:13 PM »
Kim maybe try and get salagen and see if that helps you more.  I currently use salagen and evoxac, not at the same time.  Yea they suck but they're better than nothing.  For my sinuses I started using HylaMist Nasal Spray episilk by hyalogic.  It lasts longer than just a regular saline spray.

Also I was at a walkabout for the sjs foundation last weekend and someone suggested using room temp water in small sips with food to help with taste, this way you're not just washing all of the flavor away.  Just a suggestion.  The papillae on your tongue should be able to regrow and heal if damaged but lack of saliva is always going to affect taste to some degree. 

Klonopin, an anti anxiety med has increased salivation as a rare side effect, so if you're given an Rx for it it may help two fold.  Just a thought. This disease sucks, I'm 32, what I would give for another 17 years of normalcy...

kimberly64

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Re: Taste Loss please help
« Reply #85 on: April 05, 2014, 06:52:18 PM »
Thanks Dryguy for the suggestions.  I have both medications actually but the salegen does nothing for me and I was switched to Evoxax which helps a little but not enough to taste You take care. How are the meds working for you?
Kimberly
« Last Edit: April 06, 2014, 06:39:42 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

kimberly64

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Re: Taste Loss please help
« Reply #86 on: April 06, 2014, 06:46:49 AM »
Anita,
I am going to look for a new doctor this week.  My Ent is good but my rheumy because I have negative blood work brushed me off and didnt offer any treatement.  The Ent gave me the medicine I am on and I have to try to find a new rheumy who will give me planquenil. My Ent feel a lip biopsy is an something I shouldnt have to go through when my symptoms are obvious but he cant prescribe that medicine he said, why I dont know. Any ideas?
Kimberly
« Last Edit: April 06, 2014, 06:50:21 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3