SVR, but continuing neck, TMJ, and assorted dizziness related issued.

[DoubleDose]

Just an update:  I am now about 18 months post-tx, still SVR, and overall doing pretty well.  My major issues revolve around strange neck and jaw problems, often feeling almost 'electrical' in nature.  I also feel dizzy frequently, not as much lightheaded, but more vertigo, or disequilibrium type sensations.
It more frequently occurs when I am doing low intensity things, walking in the house, reading, laying down.  My neck feels very tense, as well as my jaw and base of my head, but without headache symptoms.  It feels like rheumatoid arthritis of the cervical region, and seems very 'autoimmune' in nature.  I usually feel hot and flushed when the symptoms are at their peak, and my cheekbones get that reddish rash across them.

I am also developing various mouth sores and ulcers (cheeks, lips) similar to being on therapy.  

Have any other members been dealing with these problems after tx, especially those who have remained undetected and are considered SVR, or cured???

Just when I think everything is fading away, I develop this disconcerting set of symptoms.  This has been on and off for about six weeks so far.  I can exercise, and run, use the treadmill and stationary bike, feeling pretty good....then a few hours after I begin to feel arthritic, dizzy, funky, etc.

I do believe that the Pegylated interferons are pretty nasty as far as long term effects.  I hope they fade at some point down the road, even if it takes three years!  Any thoughts or comments????

Doubledose

[Honey15637]

Doubledose,,,Did you have those symptoms during tx and immediately after,,,continuing all this time?  I am 7 weeks post but still breaking out off and on with rash,,,Its very bad front of elbows, back of knees and on my neck.  I had one break out pretty bad right after stopping meds and took about 7 days to clear out.  Now,,,its showing up again and I have noticed when it starts to break out,,My eyelid swells up and also are very dry.  I have also had off and on since quitting,,,a neck pain on left side,,,like it has been strained or I slept on it wrong. It stopped for awhile and now is back again. Other then these 2 things,,,I feel better all the time and have more energy. I know in my case,,it might be still to soon from getting off the meds and I might be just still having problems from just getting of tx.  I'm sorry you are still having lingering problems and hope others will post where they stand after quitting tx....Ohhhh and just remembered,,,,Major concern for me at moment is my vision. Everything is still blurred and hard for me to read. I'm hoping so bad that my vision will improve as weeks go by!

[layla]

I also get continue to get that rash on my face and a bit on my legs where I had the worse rash on tx.and I am 8 months post tx. I did do 18 month both peg and riba too. It seems the extended tx is taking longer to get out of our systems. I do hope this gets better. I am also still having nausea problems.  I do wonder if some of it is do with my loss of thyroid. Overall I feel much better as you mentioned, more energy, clarity and many sx are gone but some still linger. I did have serious TMJ issues while on tx but I had them before tx. I had surgery for this the last month on tx and it is much better now. That has been an ongoing health issue for me since an accident in the 80's.
Honey, my eyes were also dry after tx and are just now mcuh better this last month. I had some riba rash on my eyelid during tx and that also is just now gone, or at least I hope it is. I guess it takes awhile but like I mentioned above I think the extended tx is also extending the sx's for quit some time. The ggod news is everything is getting better even if it is slowly. LL

[twotells]

I'm 4 1/2 months post tx and feel as though I traded my liver for some nerves.  I'm getting used to the reality that I have permanent peripheral neuropathy remaining from the cryoglobulinemia which  worsened dramatically at the outset of tx.  I also still get dry eyes and rashes.  The neuropathy improved alot right after my rituxan treatment which, along with the INF, cured the cryo about 1 1/2 yrs ago.  But it is still bad enough to prevent me from having full-time employment.  I can go for short hikes and can ride my bike for 5-10 mi a couple of times a week, but can no longer backpack or bike 100 mi a week like I used to do.

I was clear of HCV at my 3mo PCR (somehow gotten a couple of weeks early- more like a 2 1/2mo PCR), so I'm blessed and can't complain.  Also, at about 3 1/2 mo, much of my energy and drive was back.  

Although my situation is clearly rare, I can't help wondering how many others are left with permanent nerve damage?  I hope some others will respond, so I can get some idea of this.

Dave

[rearfang]

Sorry to hear that many of you are continuing to have health issues although you've completed tx. I just wanted to say hi to DD. I'd been wondering where/how you've been.
Lauren
PS Saw Steve Earle last night in Pittsfield, Mass. What a show. I'm thinking he might just be the man to help bring some light to our common cause...

[miked]

I have been off meds for five weeks.  Nasty ithchy rash on my sides; I too have that "electric" feeling on & off but I'm also still taking AD (Wellbutrin); my biggest issue is my neck down to my spine is really stiff - taking Celebrex which kind of works and thinking about a chiropractor....any ideas with the neck issue anyone?
Other than that the fog has lifted; I'm back to a limited running routine; prepping for my garden and feeling good!  
The bad news is I didn't respond to tx.  The good news is that my liver is at Stage 0.5.  

[RUNNINGWOLF]

Hi Everyone and the Top o' the Mornin to Ye!!!!!!!!
Sorry to hear about the after-effects,,,,but are we really surprised???????  This nasty stuff we been puttin our for bodies
for however many months!!!!!!  I have been off tx after 48 wks
and have developed "out of the air" HA HA, TMJ  It hurts like a ***** and I took 3 rounds of AB,,thinking I had an inner, outer
middle,,,,,somethin ear infectyion,,,it's not it is TMJ,,,,,,,inflamation (inflammation) of the cranio-ffaschis and neck muscles
My ENT,,,Dr Nais,,,,sd the only thing to do for it is anti-inflammatory meds if you can't take those,,,which I can't
heat,,,don't hold your neck in one position very long and do gentle neck exercises,,,and walk everyday,,,,I haven't got back my final SVR yet,,,chg of Dr's but I am expecting the positive...You are a great bunch of people and I couldn'tna
dunnit whichyout you all,,,,My many thanks and kudos to you!!!!!

[Honey15637]

Hi Runningwolf,,,Sorry to see you are still dealing with the leftovers also.  You are right though,,,we knew that it wasn't going to be a piece of a cake when we started the meds..

Miked,,,that is really interesting that you also are having problems with your neck. I was also wondering if going to chiropractor would help.  My hubby claims its from my neck being in same position for a year,,looking up medhelp LOL  

[cuteus]

I had an MRI of the neck and brain scan due to aches and pains and the ortho just said that there was some normal degeneration between the vertebra, meaning I was aging normally.  I don't know if I can blame the meds on getting older(I wish!) or on feeling it more...I also got dx with another lumbar herniated disc...again probably aging process...but I wish I could blame hep c or tx for it! getting old is not appealing and I won't do it gracefully!
I wonder how many other things we are going to wonder was tx related and for how many years afterward?  We talk about long term effects, but how do we know that what we experience 5 yrs from now is med related or just time related?
Also, I hate to sound like a broken record on anemia, but some of these effects might not be directly related to the meds but the anemia so many of these doctors allow to linger for months. When I first found out about the anemia, I found all these symptoms related to it(sound familiar?):
Anemia Symptoms  
Because a low red blood cell count decreases oxygen delivery to every tissue in the body, anemia causes many signs and symptoms. It makes almost any other underlying medical condition worse. For example, if you have an underlying heart problem and become anemic, you are more likely to have problems associated with your heart disease than you would have if you were not anemic.

How severe the anemia is will determine how severe the signs and symptoms will be.

Signs of anemia may include the following:
black and tarry stools (sticky and foul smelling)
Maroon, or visibly bloody stools
Rapid heart rate
Rapid breathing
Pale or cold skin
Yellow skin called jaundice
Low blood pressure
Heart murmur
Enlargement of the spleen
Symptoms of anemia may include the following:
Fatigue
Trouble breathing
Chest pain
Abdominal pain
Weight loss
Weakness
Dizziness and passing out, especially upon standing.
So are our lingering signs caused by the meds or the lasting effects of oxygen deprivation to the tissue?

Honey: the eye thing was the most unsightly side I had, and it flared up about 6 wks post tx and that was it! it has not flare up. My vision was tested and my Rx is the same as before tx, so don't despair.
I like when we post the good with the bad, is more balanced
After the 3 month post tx pcr(neg), I am feeling better than before tx, nails are finally growing after yrs of not doing so, complexion does not look as ashen, and I think hair is coming back, we'll see what it looks like in the Summer when the frizzies bloom.

[Fubarcat]

I've been off tx (48 weeks) for the last three months and my body and bones ache more now than when I was on treatment.  I just can't figure it out.  I feel like I have arthritis in every bone joint in my body, but most especially in my hips.  I am hoping by giving it some time, it will resolve.  If not, guess I'll start getting tested for arthritis or something.  Other than that - I always surprise myself at how much my "mental faculties" have returned.  That's good news.  I don't think I could have gotten any more foggier than I was and it's nice to know that it all comes back sooner or later!

Hope all is well with everyone.

[DoubleDose]

I think the post-tx arthritis appears to be pretty common among SVR's.  I believe we all need to monitor this issue, and see when and if it fades away.  Seems to me that most of us have ongoing neck and spinal issues.  This is not the picture that the drug companies paint for the post-tx experience.  I also wonder if it is not due to low level, rebounding HCV viremia in the connective tissue (as in recent articles on viral persistence after SVR)????  Could we be experiencing sides more related to HCV/ immune system reactions, rather than interferon induced autoimmune problems????

This is an issue to keep the communication lines open around.

DoubleDose

[Tallblonde]

Have you tried SAM-e yet for the joint pain?  I experienced the same pain you described (and especially the hip pain) and it all disappeared completely within a couple of weeks of taking 400 mg. of SAM-e daily.  I spend about $25 per month on it, but I don't begrudge a penny of it.  Joint pain is the worst because it really makes you feel OLD.

Hope you get some relief soon.


Susan

[Miss Charlotte]

Has anyone developed TMJ while on Peg Intron/Ribavirin TX?