The longstanding awful taste - moan!

[MAT51]

Okay so I can just about remain stoical about all that Sjogrens brings me - from the nuisance symptoms that have me administering eye drops every hour presently, to nerve pain in my legs, tendon pain in my knuckles, stiff fingers, weak arms, weird vacuum nozzle mouth, some trouble swallowing, a dry cough which wakes me in the night, hoarse voice, constipation, sexual disjunction, disequillbrium and tinnitus.

But the constant sour taste, sometimes salty too, that I've suffered for five years or more now,  just does my head in!

[Sharon]

I really commiserate!
Are you on any meds for SJS?
Have you been checked for salivary gland infection for that strange taste in your mouth?

[MAT51]

Thanks. Yes had ultrasound of parotids a few months ago. No i am not on any treatments for SJS. I wait for nerve conduction tests next week and see my new rheum in a few weeks. Not feeling very positive about these appointments though. The foul taste has haunted me for years now - started just weeks before RA type joint pain six years ago. It used to come and go. For ages I thought it was caused by Methotrexate. But then I came off all RA meds and it just carried on.

I eat just to take it away, even just briefly. Not good - I'm overweight although I'm a very healthy eater. I just don't  know how to bear it sometimes. My teeth are fine and I do have saliva. The salty sputum started after pneumonia last year and is almost the only thing that diverts it a bit. If I at least knew the cause it would help me to cope I think - the most likely seems neurological but it could be GORD. I always hope to find something to sort it out at last. I need some hope but with Sjogrens not being a disease that doctors can or will treat - sometimes I just despair 

[sixty]

What kind of doctor do you see for your paratiod glands?

[MAT51]

I had an ultrasound in the university's dental hospital a few weeks after having a lip biopsy. The oral consultant I saw was very helpful but could find little wrong orally. There was all round surprise when my lip biopsy came back very strongly for SJS. My nerves are the main way that Sjogrens affects me these days but my eyes are always dry and flare up on and off. Presently it is my dry eyes, tinnitus and hyperalacusuis (over hearing), arm weakness and the awful sour taste that are my worst symptoms.

[Sharon]

I wonder if you had your saliva analyzed in a lab if they could find an objective explanation for the taste...our saliva is "different" than that of others.
If you think it's neurological perhaps a neurologist could provide some answers.

[MAT51]

Thanks Sharon. I'm not sure where or whom I'd ask for a saliva test but I will start by asking  my rheumy. I'm under a neurologist who blames everything on my Sjogrens and I did tell her that this is the symptom hat distresses me the most. Her specialist area is Parkinson's and I believe this is a commln symptom of this and of MS too. There are lots of things that can cause it but Sjogrens is quite high on the list. I am thinking of asking to try Cellcept before quitting and opting for something alternative. I'm really desperate to slow down the disease as it's hitting me from all directions just now. If someone said the could remove my taste buds completely I'd go for it if it meant no more sour taste.

[cccourt1942]

MAT, I always smile when I see your posts.  We joined about the same time...and I recall your name as one of the first with which I became familiar.     Since we joined at the same time, and reading this thread just now, makes me fully realize how different we ALL are.  I mean, I KNOW that.  I think I forget.

I had the aggravation of this disease for I don't know how long...as most of us have.  But the conditions and symptoms vary so radically.  Realizing you aren't on any meds amazes me.  I am saying that as I realize you and Sharon both have this taste ...and I think I have a dim memory of this...but my oral cavity was so parched..and I consumed so much water...and I could eat so little...AND I had practically zero saliva.  Neither of you takes the "spit" med.  I am wondering if that is why most of us don't report this aggravating symptom.  I realize I was advanced with the disease before dx, but still--we should all have similar complaints and meds.  Have you all not requested the meds or can you not take them or do you refuse them? 

The TASTE:  I eventually lost my taste.  After years of little to the point of no taste, I suffered burning tongue.  This is an interesting condition.  REAL hurt.  Can't eat, don't want to eat.  This condition didn't improve (though I found an aloe vera based oral rinse which calmed it) until I was given low dose prednisone (LDP).  And then it improved slowly, but steadily.  The thing about that last stage of oral cavity dryness is that later I read on this site the tongue is neurological.  I don't know.  I believe it was the dryness (and the disease itself).  The prednisone doesn't help Sharon.  Have you tried it...yet it will not make your saliva magically occur. 

And last, I DO realize you are dealing with UK National Healthcare (considered by many as excellent....unless you have Sjogren's )  and drugs, treatments, etc vary from where I live.  All I can wish for you is that more medical professionals AROUND the world learn more about Sjogren's so it can be treated.  I know you know BlueGardenia (Italy) who cannot take pilocarpine or any of those meds due to a heart condition.  But she learned in the last couple of years she is allowed to take some of the powder of pilocarpine and swish it in her mouth...and she gets the same relief I get when taking it.  Mine is swallowed , so lasts longer.  Her relief is brief yet gives her a break from the "feel".  If you don't/can't take, that might help.

I hurt for you girls so much as I have been successful with my SjS meds almost from the get go.  I had to adjust some..but overall ....I was on a med schedule within about 3 or 4 months after dx.  If you've never seen me offer this, I will again: with SjS, I am ALL about comfort.  Nothing cures it.  (yet)

Have good evenings,
c3

[Sharon]

It's true the Prednisone didn't help me, but then again I was only on 10mg for a week (raised to 15mg for about 2 days). They do want me to try again at a higher dose.
If you could find a salivary gland specialist in you area that would probably be best for checking this out thoroughly!

[SjogiBear]

I had the horrid salty taste in my mouth too and my rheumy put me on a cystic fibrosis med called carbocisteine.  This thins down mucus and can help with phlegm lodging in the lungs too.  It has really helped me with the salty taste though so might be worth discussing with your medical professional.  I was at a talk given by my rheumy today about Sjogrens (she is one of the leading Sjogrens specialists in the UK) and she also mentioned night-time cough being caused by reflux - could this be a possibility?  (If this is the case apparently ranitidine is better to take at night than omeprazole.)

BTW  I am in the UK.

[MAT51]

Thanks SjogiBear. I think we know each other already from Lupus UK where I post most often as Twitchytoes? 

I will be discussing this awful taste as a priority with my rheumy a week on Monday because it is intolerable. It is mostly sour as well as sometimes salty - the saltiness is actually a relief compared to the constant rotten taste. I do take Ranitidine but only when I remember. I did take this and Lansoperazole regularly for ages but it didn't seem to make a lot of difference to the lousy taste I have to say. Your rheumy sounds very good. I am seeing a good one too but he is supposed to be retiring now so I'm not sure who will be taking over my case yet. I'm reliably informed that all the rheumies in my hospital are excellent though so hoping they are up to date on Sjogrens as well as other rheumatic diseases! 

[SjogiBear]

Hello there Twitchytoes - love that name BTW!

I am extremely lucky that I am under the care of Dr P at the GWH - she gave her annual summary talk from the BSSA Conference to the Wiltshire BSSA group yesterday which is always very interesting.

When I raised the problem of the salty taste in the mouth at my last but one appointment (which was unfortunately scheduled for the first time with a registrar - well they do have to learn I suppose) she just looked aghast at me as though I had two heads and told me that it had nothing to do with Sjogrens and maybe it was just the taste of tears/eyedrops coming into my mouth - duh!  After this she had to go and get Dr P as she was confused about something else - thank goodness as Dr P then took over and straight away explained about the carbocisteine being helpful (she also put a nerve block into the back of my head at that appointment for the occipital neuralgia which has helped so much).

The reflux meds won't do anything for the taste problems - sorry I didn't make myself clear on that.  I was just interested that you were talking about a night-time cough as she was reporting that this can happen due to reflux in which case it's the ranitidine that works best at night whereas the other reflux meds are better taken with food.

See you on the other board SjogiBear x

[MAT51]

Oh that's silly of the registrar because, if you Google salty taste then Sjogrens is there on the list of possible causes! Mine is mostly rotten rather than salty. It's quite literally as if someone has made me eat rotting garbage! It isn't as awful all the time though so I think I'm going to have to start tracking what meds and supplements I'm taking and what I'm eating and drinking to see if there's a pattern. Yikes this will take up so much time?! What does the nerve block Dr P gave you comprise of? Mat x

[MAT51]

MAT, I always smile when I see your posts.  We joined about the same time...and I recall your name as one of the first with which I became familiar.     Since we joined at the same time, and reading this thread just now, makes me fully realize how different we ALL are.  I mean, I KNOW that.  I think I forget.

I had the aggravation of this disease for I don't know how long...as most of us have.  But the conditions and symptoms vary so radically.  Realizing you aren't on any meds amazes me.  I am saying that as I realize you and Sharon both have this taste ...and I think I have a dim memory of this...but my oral cavity was so parched..and I consumed so much water...and I could eat so little...AND I had practically zero saliva.  Neither of you takes the "spit" med.  I am wondering if that is why most of us don't report this aggravating symptom.  I realize I was advanced with the disease before dx, but still--we should all have similar complaints and meds.  Have you all not requested the meds or can you not take them or do you refuse them? 

The TASTE:  I eventually lost my taste.  After years of little to the point of no taste, I suffered burning tongue.  This is an interesting condition.  REAL hurt.  Can't eat, don't want to eat.  This condition didn't improve (though I found an aloe vera based oral rinse which calmed it) until I was given low dose prednisone (LDP).  And then it improved slowly, but steadily.  The thing about that last stage of oral cavity dryness is that later I read on this site the tongue is neurological.  I don't know.  I believe it was the dryness (and the disease itself).  The prednisone doesn't help Sharon.  Have you tried it...yet it will not make your saliva magically occur. 

And last, I DO realize you are dealing with UK National Healthcare (considered by many as excellent....unless you have Sjogren's )  and drugs, treatments, etc vary from where I live.  All I can wish for you is that more medical professionals AROUND the world learn more about Sjogren's so it can be treated.  I know you know BlueGardenia (Italy) who cannot take pilocarpine or any of those meds due to a heart condition.  But she learned in the last couple of years she is allowed to take some of the powder of pilocarpine and swish it in her mouth...and she gets the same relief I get when taking it.  Mine is swallowed , so lasts longer.  Her relief is brief yet gives her a break from the "feel".  If you don't/can't take, that might help.

I hurt for you girls so much as I have been successful with my SjS meds almost from the get go.  I had to adjust some..but overall ....I was on a med schedule within about 3 or 4 months after dx.  If you've never seen me offer this, I will again: with SjS, I am ALL about comfort.  Nothing cures it.  (yet)

Have good evenings,
c3

Hi C3 - yes I recall us chatting here when we were both newbies too!

Re drugs - well so far I've tried four dmards, Sulfasalazine (for RA - anaphylaxis after 3 weeks), Methotrexate (pills and injectable - GI issues were too much after 2 years), Plaquenil (18 months until Anaphylaxis) and Imuran (pancreatitis after 3 weeks) last year. So you cab maybe see why doctors are reluctant to prescribe me more now?! But I see my new rheumy a week on Monday and will be emphasising rotten taste, tinnitus and disequilibrium as my three worst symptoms. I'm having nerve conduction studies on Thursday so should be able to rule in or out large nerve fibre involvement by then. I'm not expecting anything to show up. But if it does then the neuro will reconsider her initial thought that I should avoid immunesuppressant medications.

I know some people benefit from Pilocarpine but it can cause side effects and I'm already on meds for hypertension. I think my choice would be to try Cellcept if he or she will allow this because I've heard that it's better tolerated than others and can really help with SFN for some people. But most of all I want to see an ENT to make sure that my disequilibrium and tinnitus isn't actually being caused by an acoustic neuroma. However my GP'S referral to an ENT has been forwarded to audiology now so I might still be a way off knowing. The disequilibrium disappeared when I was on Prednisolone which suggests to me that it's vestibular but I'm no doctor of course!

Glad you are getting such relief from the meds at least. I'm on lots of topical meds for dry eyes, saliva stimulation and Levothyroxine plus a BP med and various supplements.