Do you have TMJ and Salivary Gland problems?

[DoubleDose]

One of my biggest ongoing problems, both before tx and after gaining the SVR has been persistent parotid swelling, TMJ jaw pain, neck pain, and now, nerve related pain radiating into the head, face, and shoulders and arms.  Sometimes the salivary ducts in my cheeks become tender and hot, as if salivary stones have formed, and I can taste a bitter fluid in my mouth.  I still get tongue and cheek sores as well.  Often at night I have a dull headache, extreme tinnitus, and deep neck pain along with the salivary issues.  It can get very uncomfortable, and varies from week to week in intensity. I also get frequent rib and joint pain, especially in the mid and upper back.

Do any other forum members have similar experiences?  Please describe your problems, and any solutions you have discovered.
I had hoped these issues would resolve, but after more than three years of being SVR, I have to say that they are probably worse at times than before tx.

Please feel free to describe any similar experiences.  Also, if any of you have had specific medical testing for these problems, or feedback from specialists.

Thanks in advance for any comments!

DoubleDose

[Dee1956]

While I realize this is old, it is news to me.
I had a tumor in my salivary gland removed in 1995, at the time the ENT doctor wanted me tested for HCV.
I was tested shortly after this and it came back negative.  I now realize that I must have received a false negative.  I was not diagnosed until 2007 when my platelets fell to 65.
Now I am wondering how many other problems are or were connected.
I am just searching for answers like most people here; wanted to add myself to this post in the hope we can find more answers.

[lucky1]

I experienced the same issues. My gp had me feasted for Sjögren's syndrome. Turns out many people with Sjögren's have or have had HCV. Google Sjögren's syndrome.

[Kimberly_Ann]

im really worried for days now i have had severe flipping pain in my left side of my face and swelling-at first i was diagnosed with an ear infection in the er and i refused to believe it cause the pain didnt simmer down and i was not getting any better-they prescribed me ciprofloxacin (antiobiotic) and tremadol-which didnt work for the pain anyways,so the second time i decide to go to a regular dr. and same thing-ear infection.So then i go back to same er-and now he says he sees a stone in my parotid gland-well he did a cat scan make sure i didnt have a tumor-which he never looked at the results of that. he tells me if the pain doesnt go away within 36 hours or the stone hasnt passed to go to an oral surgeon,well now im waiting to see an ent,and suffer till they schedule surgery or whatever afterwards. today i went the a dr again cant bare the pain esp. with a two and six year old daughters to raise, and it hurts! she tells me it could be tmj im not sure so im trying steroids and antibiotics and ibprofin-which works wonders! im so in pain feels like im doing a run around and nobody gives a hoot! Now when i was in the er when he told me it was saliva stones in the parotid gland he tried scraping it or something to see if he can remove it-he had no luck. But u see its this aching feeling-the worst you can imagine from my temple down towards my ear and down towards my jaw-feels kinda soothing to rub my jaw joint-been having a fever on and off not a high one though. It also seems to get so much worse at night and in the morning first thing-but the ibprofin kicks in i feel good except for an achy feeling in my temple-the pain is excrushiating.If anyone knows what this could be or anything please comment-oh by the way in the back bottom part of my mouth this discharge or whatever a lil feels like is oozing out i try to suck it out thinking i can move the stone-haha yea right,makes the pain worse.Please someone help me!

[DoubleDose]

More likely the virus either directly attacks connective tissue in the jaw, neck and spine, or causes cellular immune responses that , like autoimmune diseases, cause chronic damage to the joints and connective tissue.  TMJ and neck issues are par for the course for HCV.  The virus does not just affect the liver.  Many rheumatologists and osteopaths, now consider the virus to be a major cause of arthritic complaints, and to be specific in targeting the joints.  The virus also attacks the lymphatic and salivary system as well, and has been recognized for this ability in the past few years.  My TMJ came on early in my HCV positive years...as did my neck and back pain.

DoubleDose

[zoltrix]

I've had numerous bouts with blocked parotid glands (on the right side).  It lasts for up to 10 days, and man, those are l-o-n-g days, let me tell 'ya!  I don't bother going to the doctor or dentist when it happens now.  The only thing that makes it go away faster is massaging the area (even though it hurts).  When the stones dissolve, I get a salty taste in my mouth.  Good luck with everything!
Sue

[susan400]

I went through several months of this.  I kept having an earache, get treated for it even though they couldn't really see anything, but my ear hurt and it hurt in my head around the TMJ area and jaws and glands.  I then, went to the dentist and asked about the TMJ thing.  It's easing up somewhat now.  I don't understand a lot of these body things that have happened to me both during treatment and post.  The whole heat thing and itch thing, that I still haven't gotten a handle on.  No rash, just itch and these hot flashy instances, that may or not be hormonal related??  I don't know about that either.  I've been on HRT (estrogen only) since long before ever going on treatment and I'm still on it.  Maybe some day, we'll all know.

Susan

[MissMiss]

I sure would like to talk to you privately.  Think that is possible?

miss

[DoubleDose]

Even though I am three years SVR I share your sentiments.  I have a host of post-tx problems, and I always wonder if it was just the Interferon that caused all of this, or if the now undetected virus, is still there in residual form causing a wide range of autoimmune and nervous system problems.  Either choice seems to be a bad one.  If its the Interferon, it could be permanent.  If its the virus in a 'sub-detectable' form, then our cure might be pretty hollow.  I tend to think the Interferon had a pretty powerful effect, and caused much of the newer problems that cropped up.

DD

[hippygem]

About 5 weeks ago, I couldn't swallow properly, it hurt, and my right glands in the neck were all lumpy and swollen, with infected right side of tonsil, the Doctor GP, said it was tonsilitis.
I have never had tonsilitis ever.  After 2 days of antibiotics it all disappeared in the throat, took the glands about a week to go down. I am sceptical that it was tonsilitis because of the stories I have heard from others that have had it.  Just didn't seem right.
Now after reading what you guys are suffering, maybe it is a thyroid problem.
Something to keep an eye on I guess, see if it recurrs.

Cognitive problems are definitaley associated with hepatitis c and interferon, there have been plenty of studies of symptoms during treatment.  I have done searches through Advanced Scholar Google, OVID, and PubMed on post tx symptoms and come up with nothing.

Searching studies done on Cancer patients etc that have been on interferon might be the only way we can get long term follow up studies and see what symptoms they have after treatment.

[ala carte]

I do not have the salivary gland issues you have, but I do have many of the others.  TMJ, vertigo, lower back pain, muscle pain over the right rib, neck pain. I think the tmj started before I got the HCV, but I can't be completely sure.   I've been working for a while with a very experienced pilates teacher (even through the horrid 24 week tx) and she has noticed odd things about my body--it's really twisted--left shoulder higher than right, right hip higher than left and protruding more to the front than the left, more flexibility in left side than right.  Also the muscles on the right side of my body are more developed than on the left.  Plus I tend to thrust my jaw forward, which I understand from net research is typical in tmj. I had not noticed any of these twisty problems until she pointed them out, but they became  obvious to me when she did. So anyway, I've been trying to address these physical issues with targeted exercises.  And it seems to be helping.  I'm not pain free, but it's getting better.  My dentist seems to think that much of tmj is caused by a bad bite in one place in my mouth and I'm thinking of having some bite work done to try to correct that problem and see if it helps. I think the vertigo and neck pain are tied to the tmj. I don't know if any of the probs are related to the HCV, but it does seem curious that so many report them.  Perhaps having the disease for numerous years causes us to hold our bodies oddly, compensating somehow for swollen livers, and that throws us out of whack.  Anyway, in my view it seems like addressing the problems as if they're just physical ailments might work. Oh, and I got a tempur-pedic bed and I seem to sleep more comfortably and awake less creaky.

[DoubleDose]

Sounds just like my own laundry list of complaints.  I often feel off-balance when walking or moving my head around.  It feels connected to the spinal cord tightness and pain up through the neck and into the skull.  The 'back of the head pain' is really a problem as far as sleeping, as is the neck and shoulder pain.  I ache if I sleep on my side or if I sleep on my back!  You can't win.  The mouth sores radiate pain into my ear and neck when they are at their worst.  The swelling of salivary glands and lymph nodes in my face also promote infection in the glandular system, and I think cause fatigue and brain fog/dizziness.  

I have come to believe that there is a 'fibrosis' taking place in soft tissues, and connective tissue in the head, neck and shoulder, which leads to painful syndromes throughout that area of the body. This is also true for the whole spinal column.

Again, from the people that I have met over the years who have had HCV, I think that skeletal and mouth/ head symptoms always seem to have been a pretty prominent issue.  Either it has been severe lower and mid back issues, or it has been neck and head issues.

Let's have more feedback from the other members.

DoubleDose

[hippygem]

Geno 3, fibrosis 2, tx 2004, 24 weeks, relapser.
I have the ulcer type things happening in the mouth, tongue, cheeks, cracked lips all the time.  Always drinking water. Must be the 'Dry Mouth' symptom.
Have neck and shoulder problems, after x-rays they say it is arthritis.
Have pain in back of head, dizzy, cognitive/memory issues.
Aches different parts of body, fibromyalgia.
Stomach bloating.
Anxiety/depression.
I had these symptoms before, during and after treatment.

[beamishboy]

joint pain,headaches,diminished hearing,anxiety and depression-oh,and lazy as a winter bear......i pray these are post-trx sx's and not the stinking virus coming back....i am also still exhibiting marked memory and cognitive problems-i don't think,act or feel good,YET!!
the trampoline sounds like a good idea,been walking and am signing up with univ. rec. pass for some swimmng and sauna and such..maybe getting super active will stimulate repair??? hard to do while draggin azz....but,.have been taking SAMe,acetyl L-carnitne (along w/ usual hep-related supplements) hoping to jumpstart my energy levels..

[beamishboy]

exactly!!!!..maybe ,probably a confluence of trx-meds,longterm hep-c and residual virus stirring things up...i also believe our body's continue remembering and reacting to harrasmnt once it becomes chronic? kinda like the 'phantom limb' thing....a bad memory that keeps on rolling....but i guess it is diff(to some degrees) for everyone....i goota say your 3 yr post-trx and SVR situation has my full attention. there is.no doubt!! Interferon is powerful poison!!!....still kiking my butt

[simbacatz]

I am sorry to hear about the pain and completely understand how painful parotid swelling can get.I get parotid gland swelling almost everyday,going on for five years now. They swell mostly on right side but also on left side. And when I press on my cheek, infront of my ear some stringy,slimy,mucus colored stuff shoots out inside my mouth from the parotid duct. The doctors have done MRI,X-rays,CT,blood test, but can't find anything. I have been to so many doctors that I have lost count. At the end all of them just tell me to live with it or get my glands removed. That sounds scary, all the doctors that I went to seemed like really didn't care that I go through the pain everday. And before this problem my face was thin and now it's very round and pear shaped. Does any one think  I might have hepatitis C or TMJ. Someone please help me, it's very painful,especialy with a four year old daughter.

[Myown]

i have a problem with my ear that 'i know that i know'it is hep c related. my ear will crackle (r. ear) static sound, if i put the telephone to it or if i put headphones on or if there is a loud noise, barking dog etc. fullness feeling also

if i get upset over something the crackling starts without being noise induced, which then leads me to think it is a blood vessel or something. i've been to ENT. there isn't any wax or anything that he sees, but it drives me nuts, when it happens. plus i'm a musician,and the loud instruments surrounding me is hard to deal with sometimes, which saddens me, because music is such a big part of my life.

salivary gland has been slightly swollen for a long time. doctors all acknowledged it, but no one can really give me an answer and no one really thinks its anything to worry about. easy for them to say,,,they don't have the swollen gland.

one thing that has helped the gland situation,,i bought a rebounder (mini trampeline). i have read that these are very effective for lymph drainage, guess what?? my gland is no longer visible.  

i have this little idea that i will jump on this thing while tx so that any virons caught in lymph reserviors will be freed up and go into my blood stream and get zapped by the meds. just a theory of mine,,feels good to believe it, so i do,,,but ya never know, maybe it will work.

i bought this rebounder from hsn, its made well and very reasonable. i guess you can get them anywhere, but i didn't feel ripped off,,it is very good quality and its good,FUN!! exercise.

i am hoping that the ear problem goes away when i start to tx and doesn't worsen.