Hep C Discussion Forum

Well, Iris that sure has been a lot you have been through. Whew! I hope things stay quieter and only improve now. Are you still taking anything for pain? Murphies law, adding insult to injury, to have to do battle with a GI event on top of everything else! I am glad you got out to see things and the lay of the land, but how awful to view these radical changes to the fire landscape in your locale. Focus on those tender hopeful green bits that are forcing their way back into existence! 

I didn't bother with a "tree" tree this year, cut some greens and boughs and foliage and made up a fresh thingy, a forest bouquet like. But my tree is best viewed on my walkies out IN the forest. I am glad you got a tree up! Take it real easy. C.

iris, i had the bad shingles on the side of my head. i had one week realllllly bad, and slowly over the next 3 months it calmed down. [ that feeling of electricity going thru the nerve].

i'd say over the year i felt spots now and then but nothing ever again... 

Iris, I have had recurring shingles for years - I keep a 10-day Rx for valacyclovir 1g on hand. It's most effective if started within 72 hours of the first symptom. I start immediately. My blister always appeared in the RUQ right above the liver. Sometimes it wouldn't show up for a couple of years, sometimes three times a year. The symptoms evolved. Sometimes the nerve would itch and tingle before a flare, sometimes there was pain. sometimes nothing at all until the itty bitty blister appeared. I start the full 10 day dose of Valacyclovir, 3X a day, and the blister never never develops, it dies on the vine. If I start late, it develops into a mean angry blister that can itch and burn for weeks after the blister dries up.

Over the years, the nerve the virus travelled on became damaged - neuralgia - and I had these intense stabbing pains on along the path of the nerve, which ran right above the liver in the RUQ. When I had my liver transplant, all the nerves and muscles were severed, which changes everything. I asked the doc (hopefully) if that mean't no more shingles. He assured me it would find a way back. I now have an incision scar right next to the blister area and I get random stabbing pains from that. And I have had one outbreak in the two years since the transplant and it was in the same spot. So the transplant did not interfere with the virus's routine.   A tiny pimple right above the liver in the RUQ. No change from before the transplant. The pain I get now, same spot,  but now along the incision scar, is less intense.

I got the first generation shingles vaccine when I was first listed for the transplant. The new vaccine, Shingrex (?), something like that, was not recommended for transplant recipients when it first came out because there was no data. When I got the okay a few months ago from the transplant team, there was a nationwide shortage so I haven't gotten it yet. The first vaccine was supposed to lessen the severity and frequency of the outbreaks. I've had just the one breakout in the three years since the vaccine and it was routine.

Shingles can show up anywhere, form your eyes to your toes - usually on the same side of the body or, like mine, in the same place. Weird that mine - and your's - shows up in the liver-centric RUQ. I think it it's often a one-time thing - that it doesn't become recurring unless the immune system is compromised.

That's really all I know about it. I need to get some updated research. Good luck to you. Good that you are UND because you sure aren't stress free right now. I always thought stress was a trigger.

I had some dull, aching pain in my upper right quadrant (of torso). Not a specific sharp pain, but regional. I ascribed it to my liver being unhappy about the HepC and then the treatment.
A year or so past SVR, no pain.

Before you stop any treatment, make sure it is not a side effect, and something else.

Hey there...just wanted to add a quick update. Saw the liver dr. on Tuesday, they ruled out my liver as a source of pain. They will add an AFP marker to my final blood work which I need to get just after Christmas. One relief down.

My friend insists I have a cracked rib, but I didn't do anything that would warrant that, unless it can crack sitting in a car. 

Primary said I could benefit from a round of this antiviral either way. I get outbreaks down my sciatica on my right leg under my butt, and that is so painful when it flairs I can barely walk, (or push down the gas pedal, thank goodness for cruise control!!)

Bet (hope) this will boil down to back pain, tomorrow will be two weeks. I would say is doesn't hurt as much to cough, but is still gets worse as the day goes on, and I would Not say it is much better, unfortunately. 

Hey Cheddy so... patient is really something we have to be? arrrg. 

Hoodie your artwork is great, I love it. Congrats on the job!! You gonna be the boss lady Welcome in ceo Hoodster.

Say 5, you know they even gave me a page at the ER explaining that they don't give pain drugs, although I did hear the guy next to me get valium and morphine, so what about me??? if this is truly muscle don't ya think I would benefit from some valium? sheeze, The problem I would have is hiding it from Mr. &*%#$@

Have a safe trip C ! Your journeys are making me consider hard about the property I've been looking at that is a good 5 hours or more from any major airport and about a 1 hour drive to the grocery and gas. 

so much for quick !, BB, Iris

sadly, shingle pain can last for months... it does lessen but the nerves have to go back to normal.

and the shingle virus acts like the flu on the body.... same aches,pains ,fatigue and foggy brain 

they often give real pain meds for it...... or they did before the government declared everybody a drug abuser.

i had never heard of inner shingles cos i had the blisters.. but the pain is along the nerves which are inside. ... hence inner.

if you got a liver scan and the afp marer [tumor marker blood test], then they are on top of any changes in your liver that might be cancer.

what about a mamogram? sometimes back pain can be related to that i'm also sad to say... but since you are searching , please don't over look that.

5

I would say I do not have a definitive diagnosis. I don't know if I'm impatient or a wimp, can't  really take this pain much longer, the felexeril doesnt seem to help. Called the primary dr. this am, they're texted him a message.

Can one have normal LFT's with liver cancer? I'm a blubbering mess this morning

So is that the diagnosis?  Shingles?  That's some serious and direct  nerve pain. Drat, another obstacle.  You do know how to hang in there.

For all over 50: The new shingles vaccine is hard to find but is much more effective than the one of a few years ago.  I think the old one was 30-40 percent effective and the new one more like 70-80 percent effective.  I'll be getting it ASAP.

Let's make a pact to keep the stress down.  I don't care what the calendar says.

Yea, C that was Thursday evening (the 5th) before I got the ok from the hepatologist. (what an ordeal that was getting a call back, you'd think they would at least be curious why I was calling, I told the receptionist that I had been to the ER) by then 5 days had passed since the onset. If I had been swinging from the chandeliers I might understand a pulled muscle, ON my back, not under my ribs. I don't recall feeling brain foggy and lethargic with any other pulled muscle. I'm beginning to think fibromyalgia or some kind of acute arthritis attack, cept for the burning fire sensation in the liver area. Though Pain does have a way of bi locating.

So the treatment is for 10 days, I should be done by the 15th in the am.  

I forgot what else I was going to say, BB, Iris

Found this for Polo,  I love how they mention the word "safe" or "safely" so many times in the clip. now to see if I can find a vid. of what it looks like after the fire. I've seen one on the dismantling of the Canoga Park plant by drone, I'll look for that too.

someone captured the inside of that giant building within the Canoga Park plant.

https://www.youtube.com/watch?v=mRwwUeIPZ6s

They were very secretive when dismantling that portion, had it blocked from street view, here is one of the videos of the demolition, You can see at the very end across Vanowen that Mission Burrito was already raised, Aaannd they have already built a 5 story apartment on that site! the guy that did this flick also did one of Sierra dismantle

I must be feeling a little better, I wasn't looking much at the computer, nor did I even look at my pictures from my trip until last night!

I am taking the antiviral Valacyclovir, his (dr.) best guess was internal shingles, and after that major blowout at my mom's on my B-day with my bro, I'm wouldn't be surprised at all that this is what is going on. The only test they haven't done is an MRI. The pain seems to be slightly less this am maybe 5% percent more better than yesterday (for a total of 10% now) The pain does not come to the front, only my back right where kidney lung and liver are, and it gets worse as the day progresses. I went and got a back support which seems to help a wee bit when I am standing. It's best when I am lying down. (So far I can describe this pain as a pinched nerve, that is much worse when exerting any kind of movement, Or like the liver biopsy, or broken rib.) The fact that I have been so tired and brain foggy makes me wonder. I've done so many brainless things in the last several days, like writing the wrong dates on checks, thinking it was Friday when it was Saturday, stood up with a glass in my lap and it broke all over the place...that was fun cleaning up when I hurt so much. Sheeze

From what I can find on internal shingles I really don't have all the symptoms of that either. Waiting on Monday. Thanks for the input folks I appreciate being heard.

Blessings, Iris

Not likely, but I heard of a thing that happened (to a couple people I know, on dif occasions) one lady (after she had had already gone through a flu), then, unfortunately, she had to get this additional thing across her ribline once her flu was done - it IS a weird affliction! (this rib thing she had) - and I have absolutely NO idea if that is what you might have, it's just sheer guessing on my part, which we should NOT be doing around here - you on the other hand ARE doing the right things and are bumping heads with knowledgeable docs who have seen a thing or two to help rule stuff out. There will be about a million websites, all about unexplained "right upper quadrant" pain and all the things that might cause it - look up RUQ pain caused by costochondritis, and you'll see what my friend had, hers went along her lowest ribline from spine to sternum but the worst discomfort was right on her side versus her front or back, it was quite a mystery for her for a while and uncomfortable! Eventually she found a person (a doc) who was sure that's what she had. I recall she was off work, took pain meds, and she just got better.

Frustrating, but that is all one can do sometimes, just keep seeing the docs, get tested for this and that, rule out the worst things, and be happy you don't have those! 

Hang in there, keep presenting yourself as required, until this gets figured out, or goes away. As far as sheer guessing goes, that is not an outrageous guess Dr. 5 made either.  C.

So, Iris, how goes it today?? What the news or update. Fingers crossed that things are quietening or there has been some improvement/respite? C.

As I and Iris have said before, she doesn't have a GB. 

We are all agreed, have to get to the bottom of this, but nothing helps Iris feel any better in the interim.

Keep presenting yourself to the docs you can get to iris, are there not ANY other symptoms that go along with this discomfort?? Nothing at all, no GI symptoms of any kind?? Could you say that this discomfort is roughly following a "rib"-line? Do some gentle palpating of your own, if you can, or get someone else to, and try to physically identify exactly where the pain is located, see if it is confined to running along a rib-line. You have not mentioned whether you tried taking any of the flexeril/or any meds for this (like last night) - have you? You said one doc did find a tender spot to palpation, where was that, and is it still there, exactly the same in the same spot? Or has the painful area changed, grown, morphed, moved, spread at all?

Just curious, how many days of bactrim did they give you and how many days of it did you take before you stopped it.

Keep sleuthing this pain symptom with your docs. C.

did they absolutely rule out gallbladder ? do you have emergency or urgent care near by?

There is no doubt in my mind that the DAAs that I was on, messed up my nervous system... I had had the occasional minor twinge of nerve pain in my feet before but after, it became much worse, much more constant and frequent. I tell myself its still better than actively dying of HCV.

I sure hope your Drs get your pain diagnosed quickly.

iris, you have been  thru a lot of stress lately; but yea i got the migraine after tx

i agree, my nervous system was shot after tx 

Iris,

The information I’ve been able to find doesn’t indicate a relationship between any of the DAA’s and the occurrence of Shingles. Matter of fact, the incidence of it in thousands of Harvoni patients alone, showed a rate of 0.16% that experienced an outbreak. There was no indication of viral mutation related to either anti viral medication when taken together or alone. No interactions noted. 

If your GP thinks this would be a wise course of action and your Hepa isn’t responding fast enough, I would consider the GP’s advice. If this is a Shingles outbreak, starting Acyclovir or similar will greatly diminish or prevent it from developing. A full blown outbreak can be awfully uncomfortable and long term. 

omg, not shingles ! i had shingles on my head when i quit drinking and drugging  back in the mid 80's. 

i was in bed for a week with my head cramping and no pain pills.

iris, let us all unite in concert and pray away anything harmful to you.... let the goodness take over and release any sickness.

i had my vinegar today

i'm so glad you are making the rounds to all the dr's. ; let us know if the blisters appear.

Im praying for you Iris. Lets have faith ok? Lets try not to freak out just yet. Your self care is so excellent, along with doctors care, youre in really good hands. Chances are we wont need to freak out at all and well be glad we didnt stress out unnecessarily. Easier said than done I know. Hang in there sweetie and continue keeping us in the loop please. Take it easy. 

i'm thankful this came during my days off from the job, i'm sitting here all snuggly in bed watching tv, blowing my nose and hoping it goes quickly. i go back on thursday nite so should be better-ish by then.

be well friends

Iris,

I really like that, that the ER doc was so thorough with you - he did his due diligence, covered all liabilities, and protected you by being so thorough in checking you out on many fronts.

Good you had so many health factors checked out all at once - good stuff.

You have a lot of info for your family doc to go on now. 

So, I am assuming that (maybe) the urine R&M (possibly) showed little or nothing at your initial ER visit, but, in an abundance of good caution he started you on the bactrim anyway, just based on your complaints of this discomfort - (perhaps), now, he can further see that your urine C&S is turning up with no growth, thus far, which may be why he is saying it is not a UTI problem.

ER doc said for you to keep taking the bactrim?? Well then, I would, being that you can ask your family doc about discontinuing it as soon as tomorrow. Your ER doc may have had some reason to tell you to finish the bactrim?? - I have no idea - but when in doubt do what he instructed, at least until your other family doc tells you do not have to take the bactrim anymore. How many days-worth of the bactrim were prescribed to you in all?

Good you have had all that testing done and have the results.

You can have the GFR and creatinine repeated in future to see if those remain the same or better. What were the creatinine and GFR levels BTW?

Hope the discomfort is starting to decrease? Take it real easy. Do the things you think will help. C.

Iris GFR is glomerular filtration rate aka kidney function. Thats great news that you dont have a kidney infection! Not sure how to advise you on completing the round of factor in or not. Good call talking to the doc about that. And dont ever worry about bringing your worries here. You are NOT a dweeb. Well ok if youre a dweeb then Im a dweeb. Were all a bunch of dweebs!!

5, Congrats on 26 years of Sobriety!! Hope the allergies clear up pronto. Please dont take any Benadryl, that stuff causes more harm than good. But maybe you knew that already. 

Tig, Im glad youre seeing signs of improvement. Its really nice that you can be there for your dad. 

No, he didn’t... Had plans to go in today with my Dad, he had an appointment. The doctor‘s office called to reschedule. He went on vacation. Next week at the earliest. That’s my excuse and I’m sticking to it. I sense improvement...

Iris, I know the frustration of insurance acceptance. I have a Medicare Advantage plan through Blue Cross HMO. It’s amazing how many practices and labs don’t take it. I could go to urgent care or the hospital, but they kill you with deductibles, copays and percentages. I hope you get the imaging you need to determine the cause or extent of trouble. Are you getting any relief from the Bactrim? Good luck!

Ok so the imaging center doesn't take my insurance, I called my primary and they said go the hospital.

So off I go...Iris