Author Topic: Taste Loss please help  (Read 18833 times)

kimberly64

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Re: Taste Loss please help
« Reply #45 on: March 20, 2014, 06:32:50 AM »
I take my husband with me usually, but not to the Rheumy, that was a huge mistake.  What recourse do I have aginat a doctor who suggest I am lying about severity of my symptoms because no one else he treats has this this way as he put it.  I just dont understand how a doctor can dismiss you.  I used to never get sick so I did not know doctors could just send you away without test and I even had notes from an ENT STATING HIGHLY SUSPICIOUS OF SJOGRENS dispite negative blood work, notes that stated oral cavity void of saliva, notes from the schrimer test proving dry eye and on restasis  I just dont understand. 
Sjogrens, Evoxac, Restasis , Omega3

ohiolady

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Re: Taste Loss please help
« Reply #46 on: March 20, 2014, 06:54:43 AM »
Kim, find another doctor who will treat you.  Teaching hospitals are very thorough.  If your ENT will prescribe Plaquenil you have the meds you need.  I am anxious to hear how you feel after trying brand name Evoxac.
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

kimberly64

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Re: Taste Loss please help
« Reply #47 on: March 20, 2014, 07:15:43 AM »
Ohiolady,
I see you dont take planquenil.  is that a personnal decision?  My pills say Evoxac 30mg but the bottle is labeled generic, so if I get the generic next time for sure I am in big trouble if it doesnt work.  I dont understand how a drug can stay on the market in a generic form if it doesnt work anyway.  Now I am worried my refill I pick up today will be the generic form and what little relief it give me will be gone. My insurance will cover zero for this name brand and its over 400 a month which I cannot afford.
« Last Edit: March 20, 2014, 07:21:41 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

Gingersnap

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Re: Taste Loss please help
« Reply #48 on: March 20, 2014, 08:30:55 AM »
I would not fret about the brand name vs generic especially if you don't have the option of the brand name. I willingly take the generic one and it works fine. I took the brand name one before the generic was available and I honestly haven't noticed a difference. Sometimes there can be different fillers in these meds but the active ingredient has to be the same.
37/F Dx sjs with lupus overlap, raynauds
Plaquenil,prednisone, gabapentin, cymbalta, zanaflex, evoxac, lidoderm patch, restasis

Velcro

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Re: Taste Loss please help
« Reply #49 on: March 20, 2014, 08:42:22 AM »
Another suggestion Kimberly is to get an appointment with a Pulmonologist since you are having no luck with your Rheumy or ENT.  You are getting winded quickly, a pulmonologist can do all the appropriate things to check your lungs.  They can also prescribe Plaquenil.

ohiolady

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Re: Taste Loss please help
« Reply #50 on: March 20, 2014, 05:23:19 PM »
Kim,

Yes it is a personal decision to not take plaquenil..  My rheumy wanted me to take when my parotid glands were swollen.  I declined because I have had kidney cancer and only have one kidney left.  I take twelve pills a day now and also have gastroparesis.  The thought of another med with my stomach and the effect meds can have on kidneys was not something I wanted to deal with.  I really do not have the pain a lot of people do.

My rheumy says Plaquenil has not been shown to help with dryness but some people on this board would argue with that.  I don't know.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

sjenny

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Re: Taste Loss please help
« Reply #51 on: March 21, 2014, 12:48:55 PM »
Kim:

Have you tried Sea Buckthorn Oil?  It helped me with mouth dryness.

Also, you might try contacting Dr. Nader Soliman from Rockville Maryland.  - He treats Sjorgrens homeopathically and was a life saver for me.

sjenny

sjenny

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Re: Taste Loss please help
« Reply #52 on: March 21, 2014, 01:06:18 PM »
Don't blame you for not wanting to do the lip biopsy test - neither did I and maybe you won't have to - there is a new test to diagnose Sjogrens

http://www.buffalo.edu/news/releases/2012/12/13854.html

Quote
Patients suffering from the painful autoimmune disease, Sjogren's Syndrome, will soon be able to be properly diagnosed much earlier, thanks to the discovery of novel antibodies by researchers at the University at Buffalo and Immco Diagnostics, Inc

Hope this helps,
sjenny

kimberly64

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Re: Taste Loss please help
« Reply #53 on: March 22, 2014, 05:55:25 AM »
Sjenny,
Does this suppliment produce more saliva?  just curious. And how much do you take and does it interact with any meds and cause stomack upset? THNAKS!
« Last Edit: March 22, 2014, 05:57:08 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

sjenny

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Re: Taste Loss please help
« Reply #54 on: March 22, 2014, 05:08:53 PM »
Yes, the sea buckthorn oil produced more saliva for me, although there is some clinical research that a certain type of sea buckthorn oil helps with dry eye.  I only took 1000 mg tablet per day and only when needed.

I think it can interfere with blood clotting, so do not take it with other medications that slow clotting like aspirin, Plavix, Coumadin etc.

kimberly64

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Re: Taste Loss please help
« Reply #55 on: March 25, 2014, 05:38:52 AM »
Sjenny
Did you notice any side affects from this suppliment, stomack upset?  Can  it be taken with Evoxac? Do you have any experience or success with omerga 3s?
Sjogrens, Evoxac, Restasis , Omega3

Tantalus

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Re: Taste Loss please help
« Reply #56 on: March 25, 2014, 06:27:28 AM »
My ophthalmologist recommended I try TheraTears Nutrition, a blend of fish and flax-seed oils.  He said I could save some money by finding the different components in the vitamin aisle.  I just buy the brand name.

Although it took a while, my whole routine has worked well for my eyes.  The tears evaporate quickly when examined but for the most part, if I keep up with the plan, they are pretty comfortable: Restasis, TheraTears Nutrition, any preservative-free drop (I prefer Target brand).

I don't know if the other meds help the eyes as well but I suspect that with some of them they have, that the whole goal of controlling inflammation has been helpful: Evoxac, Plaquenil, nabumetone, methotrexate.

T

kimberly64

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Re: Taste Loss please help
« Reply #57 on: March 26, 2014, 06:07:22 AM »
My eyes are the least of dryness.  Its mouth and nose and throat that got the hardest hit.  Restasis and systane drops on occasion help the eyes.  Want to take omega3 only if its not a drying suppliment and is ativan a non drying anxiety med? I need something.
Kimberly
Sjogrens, Evoxac, Restasis , Omega3

Tantalus

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Re: Taste Loss please help
« Reply #58 on: March 26, 2014, 06:18:52 AM »
I don't believe there is any dryness with these supplements.  I don't know about the Atavan.  Not all meds cause dryness in everyone.

Thea

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Re: Taste Loss please help
« Reply #59 on: March 26, 2014, 11:43:35 AM »
My opthamologist (sp?) specifically told me to start Omega 3s because they help with dryness of the eyes. I assume they would also help with other dryness.

FWIW, I started Plaquenil (well, the generic version) about 6 weeks ago and it seems to have already helped my dry eyes/mouth/nose. I do also use a saline spray for my nose. My sense of smell is pretty well shot. As for taste, I can taste, but things taste oddly. I keep thinking I've messed up a favourite recipe, but it just tastes different now.
Inflammatory osteoarthritis, dx Nov 2013, Secondary SS (sero-neg) dx Feb 2013, Type 2 Diabetes (diet controlled), Post-Viral Syndrome (lungs); Hydroxychloroquine, Restassis, Omega 3 oils, Optive Advanced, Biotene, fluoride gel, MI Paste