Sjogren's or Sicca Syndrome Symptoms Question for all.

One of my major pre-tx and post-tx symptoms is a Sjogren's like syndrome (Sicca Syndrome), characterized by chronic dry irritated eyes, periodic salivary gland enlargement (mostly Parotid, but some swelling in sub-mandibular), dryness in nose and throat, and fatigue.  These are the major symptoms of both Sjogren's and Sicca syndrome, both of which are highly 'associated with' HCV, and very possibly caused by it.

The syndrome is thought to be autoimmune in nature, and probably derives from the autoimmune reaction to the HCV virus, in our cases.(OR it could be from direct infection by the virus itself!)  I am curious to know how many of our viewers have noticed symptoms similar to the above, either before, during, or after tx.  If so, what have your doctors said about the connection to HCV, and what have they advised????

Have any of our members found relief from the problems associated with this syndrome after obtaining SVR???

There is a much higher risk of Lymphoma associated with having this syndrome, than for the general population.  Has anyone had their doctor address any of this?????  Have your problems remained at the same level, or progressed over the years???

Lymph node swelling may also go along with these conditions.
I personally have been dealing with most of these issues for many years, and still have not gotten many good answers from the medical community.  I also have not been able to find any effective treatment for the symptoms.

Any comments or experiences are welcomed!

[Xenigma]

It's funny that you mention those things...
I've had Sjogrens for about 15 years now.
I get little stones in my eyelids and in
the Parotid. I haven't done treatment yet.
I just saw my rheumatologist on Monday and because my white counts are always high (Many years now) and I have swollen lymph nodes (Neck constantly - groin from time to time) he is sending me to a hematologist/oncologist.
The other thing I have had for years(since I ws 9 years old)
is Raynauds especially in my fingers.  My toes are usually OK.
I'm curious too as to how many suffer from this also.
Good question
enigma

[holding_on]

I am genotype 1A/low VL, been on Pegasys/Copegus for 37 weeks   You're question was about symptoms after SVR, which I obviously have not achieved (yet), but I thought you might be interested to know that I did not develop many of the symptoms you describe until I started tx.  Since tx, I've had dry eyes, dry mouth, SEVERE fatigue, a sensation that my muscles (esp. upper arms) are swollen, although they don't look swollen.  And just yesterday I developed a swollen parotid gland (feels like a marble in my cheek).  Also, have had +ANA since tx.  I'm wondering if I've opened Pandora's box by starting tx, as I was relatively okay before (no fibrosis, no extrahepatic symptoms of HCV except for +RF).  I'm seriously thinking about stopping tx because I feel like the undead and beginning to think tx is doing me more harm than good at this point.

[Fisheress]

It's funny you metioned "little stones in my eyelids".  I am pre treatment and never thought for a moment that the stones under the eyelids were even remotely connected to the Hep C.  I thought I was getting a sty under my eyelid, and man was it painful although never swelled up like a sty.  I kept swearing I had something in my eye!  Now I know!  WOW, amazing the things you can find out here on this site.  I lately have been expericing watery bloodshot eyes, Along w/itching on my back between my shoulder blades.  I am guessing now this all related.  My eyes are really going to **** now too. I have a constant ringing in my ears.  And noticed latly I am having liver pain too.  Sounds as if treatment is just around the corner for me.  I have been trying to hold off wondering if the treatment is worse than the cure and the sides that stay w/you a life time........God bless all.........fish

[TnHepGuy_]

<a href="http://www.hivandhepatitis.com/hep_c/news/2005/012405_b.html">HCV RNA in the Skin Lesions of Individuals with Prurigo and Chronic Hepatitis C</a>


Also, yesterday's (February 8th) Wall Street Journal had an article by Heather Won Tesoriero listed under the sub-heading 'Health Journal'on <a href="http://www.sjsupport.org/">Stevens Johnson Syndrome</a> in which there can be a severe dermatological reaction triggered by medications.


TnHepGuy

[Califia]

Ah, there you are!   I have a tech question for you:  How do you post actual links?  Pretty slick, and  unless you have a proprietary technique you'd rather not share, I'd like to learn how to do it, too.  More importantly, how are you feeling?

[DoubleDose]

Please keep the commentary coming in regarding this set of extrahepatic symptoms (Sjogrens and/or Sicca Syndrome).

I am very interested in seeing how many of us have dealt with these issues either as a result of HCV, or in some cases, as above, due to TX itself.  Maybe we can all get a better insight into what is going on.  

Thanks for the replies!!!

DoubleDose

[TnHepGuy_]

Thank you for asking. In some ways doing much better, in other ways just as bad as on tx. In order not to bore anyone to tears, I'll provide one example of each: <u>Better</u> = this past weekend I went to the local sawmill (doesn't everyone have one nearby?) and picked up a load of mulch. I unloaded it in wheelbarrow-fulls and my wife and I put it down on some flower beds. Then we turned a few of our vegetable beds over in preparation for planting peas, radishes, spinach and lettuce. And finally we did some fence mending (in the literal sense). This is the first time in what seems like ages that I could actually do some fairly strenuous physical labor and not keel over. (Next, I have to consider getting the chainsaw out to drop that dead hickory tree). <u>Just-As-Bad</u> = every morning as I lie in bed, it feels as if someone has pummeled me all through the night - most especially in the lower extremities. Then after the theraputic beating, they must have decided to attach electrodes to my joints and pluged (plugged) them directly into the nearest outlet.



Now, onto the meat of the matter:


- to create a link in HTML you would type the following, but remove all the spaces except the one between 'a' and 'href':


< a href="URL">Text< / a >


The following is an example where the <u>URL</u> is  <i>http://www.vangoghgallery.com/painting/p_0463.htm</i> and the <u>Text</u> is <i>The Night Cafe in the Place Lamartine in Arles</i>:


<a href="http://www.vangoghgallery.com/painting/p_0463.htm">The Night Cafe in the Place Lamartine in Arles</a>



- to do an 'underline' you would type the following, but remove all of the spaces - (same applies to 'bold' and 'italic'):


< u >Text< / u >

for example: <u>Vincent</u>



- to do a bold:


< b >Text< / b >

for example: <b>Van</b>



- to do an italic:


< i >Text< / i >

for example: <i>Gogh</i>


(if all the above is more confusing than helpful, I'd be happy to try and send the info over an e-mail).



And how might you be holding up these days under the constant chemically-induced viral annihilation barrage???


TnHepGuy

[Califia]

Please, no more troubled moments, Anna.   You're welcome to hand them over to me,  if you think it would help.  After all,  what's one or two more when one is on tx?  I'm wishing you all the best.

[Califia]

Hmmm, I don't like this last part...sure sounds like the Men in Black to me.  The electrode usage is the dead give away.  Remember, only give them your name, rank and serial number and don't look them directly in the eyes.   Unless, of course, you really want to engage with them, but I bet you'd rather remain here and work in your garden.   You've probably had more than enough of interplanetary travel for a while.   (Sure hope this joint pain phase is a short one.)

How have I been feeling?  Well, uh,  decidedly alien.   Hypothyroidism does nasty things to the mind and energy levels, not to mention the psyche.   Needless to say, it explains my absence from the board for a while.   (And how many people can lay claim to weight GAIN while on tx?  Guess who's waving her hand!)

Great HTML instructions.  Thank you most kindly....

[annainitaly]

XENIGMA, DOUBLEDOSE

I have sicca/sjogren's syndrome at a slight stage. and I have had raynaud's for 36 years.

in my case they are connected with my autoimmune problem and not with TX. don't know if my case can be interesting for you. I am followed by a rheumathologist, besides the hepathologists.
I didn't know that sjogren's means increased risk of developing a lymphoma: do you know in which percentage?

as far as I know, there is no real cure for sjogren's, just eyedrops, lotions, gels etc. there are treatments for raynaud's, but I am not sure if I want to add them to my current meds for PBC. maybe next year.

CALIFIA
how are you??? I am in a troubled moment, but I'll reach to you sooner or later. hope your tx is not beating too hard and your arm  is better...    
take care!  ((( )))  
a.

[md1johnson]

I never cleared the viral load and now that I no what I do I'm glad I didn't do the second tx.

[md1johnson]

I fell the same way, If I had it all to do over I would not do the tx. I now I have pulmonary hypertension. Swollen glands behind the ears and on the neck.and lots of abd problem that I've been told was related to the tx. I guess we work with what we have. Like the old saying goes "I'm sick and tired of being sick and tired.

[Micro2]

I am 9 months post tx. My eyes are killing me. Ringing ears.Depression. Mental fog. Memory trouble. Numbness and tingling in feet and toes and sometimes in my arms and hands and head. Low grade headaches. Lots of hip,leg,feet pain. Joint,muscle,bone pain. Chronic fatigue.
Prior to tx, I only had fatigue.
I see a new hepatologist next week.

[TnHepGuy_]

Yes, my wife and I are big fans of Van Gogh's paintings and sketches. About a month ago we had the pleasure to see a wonderful <a href="http://www.high.org/vangogh/exhibition/vg_highlights1.htm">exhibit</a> of some of his works in Atlanta. A few years back we saw other exhibits of his in Washington and Philadelphia. Any chance we have, we always try and catch his work. It is so amazing to see in-person.


I certainly hope you have received the best news possible regarding your blood work. And you're right in that being able to take one's mind off of this disease is a very worthy distraction, indeed.


TnHepGuy

[DoubleDose]

Did you clear the virus at the end of tx, and did you get the 6 month post tx SVR/ undetected?  I am curious as to whether your sx are interferon/ post-tx in origin, or if a resurgent viral load is also a factor.

The after-effects of this tx are more damaging ,it seems, in many HCV patients, than one would be led to believe by the research literature.  Then again, maybe the Pegs are causing more problems, and maybe we are just beginning to see a trend.

It sure seems like a high % of the people on this forum alone have experienced a wide range of post-tx, longer term problems.
Is our group atypical of the general HCV population for some reason????  I cannot understand why that would be the case!

Any other input from the peanut gallery???

Let's get some 'lurkers' in on the discussion.

And our 'old guard' senior forum members!!!

DoubleDose

[rearfang]

Are you a fan of Van Gogh? He happens to be my favorite artist. (As I wait to find out the results of my blood tests for genotype/viral load etc... which should be any minute now... It's nice to think of something other than you-know-what.)

[Xenigma]

From reading this forum for over a year
it seems there is no rhyme or reason for
the extra-hepatic manifestations. I have many symptoms,
for many years, and I am not on tx.  
Doc says it's all caused from the HCV playing havoc
with the immune system.(Or exasperated<sp> by the virus)
Some members have no ex-h man. and then
start to develop them during and/or post tx,
while other had many ex-h man. pre-tx and
feel better post tx.  I feel it all depends on our
own immune systems. Everyone is different.
With HCV it seems you would want to
boost the immune system to fight the virus,
yet boosting the immune system causes it to
attack itself.  For the RA,Sjogrens and other CTD's
you want to quell the immune system so it stops attacking itself. We are kinda stuck between a rock and a hard place.
I think if you have no ex-h man. of HCV
right now, unfortunately you will in time-with or without treatment. If you did have EX-H MAN.
and they are gone or going, count your blessings.
BTW-There seems there is no connection between
these extra-hepatic manifestations with regard to
relapsing or how severe your vl or biopsy is.
Just a thought...a rather long thought  LOL
enigma

[Xenigma]

It's wonderful that the "symptoms" have resolved.
I hope it stays that way!! I wish for everyone to
have the response that you did to tx :-)
I do remember your swollen lymph nodes bothering you.
If I remember correctly, you had some on
the back of your head too.  I'm glad that all resolved.
A "crapshoot" indeed.
I think we could get responses from everyone that reads
this forum on this subject matter,weed through it,
categorize it and still make no sense of it.
Stay well...
enigma