Feel worse off treatment than on....

[susan400]

Howdy there heppers and family of heppers.  I had to say it, but I feel more lousy off treatment than on.  My herniated disk in my back for the last 5 mon. is seriously causing me to contemplate surgery.  This pain is excruciating.  I'm still having pain even through the Oxycodone.  Yea, I know it's not good for your liver, but being unable to function and walking around in circles crying due to pain isn't good for it either.  I haven't slept for the past 4 nights due to pain and this is w/the Oxy.  I've got a call into the pain doctor and she will be hearing from me, 1st thing in the am.

I've got to get up.

Take care,

Susan

[terriri]

In my view, Cutis hit the nail on the head; we tend to react to pain differently. There have been many studies on why some people have mild backaches and some have crippling pain when both groups have the same abnormal MRI

[twotells]

I had asked my Pain Specialist about Methodone.  He told me it would be an option, but said it would probably not be as effective as Oxycodone.  Almost 30 yrs ago, when I was a case manager, I was told of the pain relief methadone offered by some people on methadone maintenance.  One older guy claimed he got some street heroin just so he could qualify for methadone.  Dave

[md1johnson]

you might try asking about methadone it has no thing to hurt the liver like tylnol, aspirin and it'd timed delayed so you don't have to take  as many. There something about HCV that brings out every pain a body can have.

[moonbaby]

I agree that HCV has something to do with our joint/musculoskeletal problems. Also, I have been diagnosed with Hashimoto's Disease, which is an autoimmune disease of the thyroid-happened around the 3rd month of tx. Now taking 200mcg of Thyroxin 6 days/week. During tx, I was diagnosed with a herniation at T-10, and 3 dessicated discs the lumbar region. I take Norco 10/325 for the pain. Gastro called and said my Fibrospect was 41, which means stage 0-1. So, I probably have backed up a stage. Bx year and half ago showed stageII/II. Not sure how much faith to put into the Fibrospect, but I'll take it for now.

Love and Light,
Moonbaby

[md1johnson]

I no what you mean now is worst than when I was on the tx. I now have plumonary hypertension. My ammonia level just got up to 106.The're not suppose to be any in your system. I thought I was loosing my mind.

[twotells]

We all need to know what is going on with our joints and it would be a great idea to compile some data.  Maybe someone could collect this and strip it of any personal identifiers.

I hope everyone with this kind of pain is being checked out for metabolic problems, as well as spinal problems.  I've been told that 90% of people in their 40's and 50's have degenerative disc disease.  Many don't have any noticable pain from it.  My orthopedist (who did a great job on my knee) wisely said he dosen't work on backs (meaning surgery).  I carted off my xrays and MRI's of my herniated disc (L5-S1) to 2 Neurosurgeons.  The first said simply he couldn't help me.  The second, a chief neurosurgeon at a large city hospital, told me my problem wasn't the back at all, but metabolic.  Turns out that I'd been treated for 2 mo with meds and epidurals for a back problem that wasn't a back problem, but acted like one.  I was diagnosed with Peripheral Neuropathy due to Cryoglobulinemia.  A significant minority of chronic HCV infected persons have this disease.  In most (80%), the cryo clears when the HCV clears.  In 20%, it dosen't clear from HCV tx alone.  In some rare cases, like mine, the Interferon actually makes it worse.  The test for Cryoglobulinemia is the Cryocrit.  Some GI/Hepatologists screen for it, some don't.

Heppers have also developed Fibromyalgia and Rheumatoid arthritis which can cause back pain.  Whether this is from the virus or the treatment seems to be academic.

I'd also like to see us get some answers,  Dave

[cuteus]

wow Susan, that sounds like a lot of pain if you took the shots and PT and still have it, shucks! My neurologist suggested the surgery, it seems as if he is confident with the procedure as a means to alleviate the pain.  I was not sure, but after he did my carpal tunnel release, I think he is a good neurosurgeon. The problem is I never know if I should go to him or the orhopedist! Hope you get something soon.

doubledose; now that is one theory I could embrace, for hcv somehow to  trigger these episodes and/or enhance HOW we feel them. of course interferon enhanced them a tad more for some of us.
My original herniated disc, in 98(+/-), was giving me most discomfort. They did not believe I could be feeling so much discomfort from such a small herniation, but to me it was painful. I still felt like I was capping for drugs when they made the comment, since a narcotic combo was what alleviated it for me the best.  Another disc was dx during tx and it also felt like hell sometimes.  I thought it was crazy that my system could feel so much discomfort from the condition, since the experts did not think I should be, does HCV somehow sets the tone for how we feel and interpret pain?  I know interferon did for me also, but I had these pains prior to pegasys.  I don't think I have ever read anything on it, has anyone?

Susan, oxycontin is processed primarily through the kidneys, I researched it a while back.
feel better

[layla]

Interesting subject. I had HCV for about 28 years until recent SVR. I did have a lot of joint pain before tx that went away my second month on tx. I had back pain before during and after tx that at times was/is very painful. I can't really figure it out and just deal with it though it often wakes me up at night. This morning when I woke the first thing I noticed was my back is painful even though it was slight. I think some of us are more prone to autoimmune issues than others and this might be associated with that. I tested positive for RA before tx but now I am normal. I also lost my thyroid. How many of you on this post with back pain have lost their thyroid or have an autimmune issue?  Here is a paragraph from a thyroid site which indicates some thyroid symptoms, notice muscle aches, joint pain, loss of mental clarity and function.

An underactive thyroid may cause fatigue, weight gain, depression, muscle aches, joint pain, loss of mental clarity and function, dry skin, brittle hair, hair loss, breast milk formation, constipation, a constant feeling of being cold, and many other symptoms.

I know there are quit a few who have autoimmune issues and lost their thyroid. I may be off base here but I would be curious to know how many of you have any back pain even if it is slight. LL

[susan400]

I certainly agree, Double Dose! If we could get at least 100 people to respond, that would a good number to use to let NIH know about our observations.

Sounds like aplan......

Susan

[DRAGON SLAYER]

I have fractures on vertebra C-5 & C-6 due to an accident.
Spinal Dr. advised me to undergo cervical fusion surgery when my LFT values hit a record high & I was diagnosed with HCV. By that time the surgery was placed on hold & I began Tx nearly a year later. As most of you know I cleared the virus & never rescheduled my surgical procedure......THANK GOD. At this stage I prefer to delay this surgery as long as possible & do it ONLY when ABSOLUTELY necessary.
Just my addition to the back problem chronicles.
Good luck all,
Ben

[omyst]

Hi Susan

I've had back problems on and off for about 10 years. The thing I found to be most effective was icing it. I bought a cold wrap that I can wrap around my waist while I get things done. It was some of the best money I ever spent.

http://www.icedown.com/injury.html#back

[DoubleDose]

Thanks to all of you for the thought-provoking responses to my question regarding spinal pain and disc problems.  I do believe there is something going on that relates to the HCV virus and it's effects on our systems.  Whether it is Cryo, or a combination of things, will need to be determined.  I also have had various specialists, especially neurologists, tell me that the MRI's and X-Rays of my back and neck do not look much different than the average person without any back pain.  The joints that always caused the most pain seemed to look fairly normal, with slight degeneration typical of my age.  

If it is true that they are finding HCV in the spinal column on autopsy, as some articles claim (and also in brain tissue, which might explain brain-fog, and fatigue), then it's not a stretch to anticipate direct pathological attacks on the tissues where it is found (connective tissue between discs, nerves in spinal column, etc).  The other explanation, that most docs and researchers love, is that the cellular immune reaction from HCV generates antibodies and antigens which do lots of damage to tissues and organs where the HCV resides.  Either way, it may be an explanation for all the spinal problems HCV positive folks seem to manifest.  Even after SVR, many experience ongoing problems, which could be from 1. all the interferon, and the cellular and humoral immune responses it provokes.  2.  from low level HCV which may remain is isolated compartments, doing ongoing low level damage on a chronic basis.  OR 3.  low level HCV remaining in compartments, indirectly causing pain and other problems, by provoking local cellular immune reactions.  

Or it's just all in our heads.......  and I think some doctors would like us to believe that!  Funny how we all have the same problems though???  

The only reason I continue to pursue these issues (myself being SVR, and getting back to a more normal life) is that I would like to see new treatments and medications developed that will address all these issues, down the road.  If the 'persistent virus after SVR' researchers turn out to be correct, then we may all benefit from next generation 'inhibitors' that will somehow 'get at' the compartmentalized HCV remaining, OR 'defuse' any low-level, 'deactivated or dormant' virus in lymphocytes, spinal column, etc.  Or if the problem is cellular immunity issues, or autoimmunity, then we will need therapies that address that specifically.  The researchers need to more fully understand this virus, and how it works!!!  That will lead to better, whole-system treatments for all of us.

Just my thoughts.                DoubleDose

[susan400]

I don't know how you'd get tested for a autoimmune thing? My thyroid always tests normal.  I'm not diabetic.  All my MRI's cervical, thoracic & lumbar show no arthritis and my bone densitomitry is normal.  The only thing that showed up was my herniated disk @ L5-S1.  I've never had any back problems in my entire life, until this.  Whenever I've had ANA tests done, they come back normal, too.   However, years ago, I had high reactive CMV and EBV viral levels (like Miles).  

Take care.

Susan

[DoubleDose]

I do hope you find some relief for your back. I know the feeling.  Mine is mostly mid-back, and neck!

The striking thing about your problem is this:  Doesn't it seem strange that almost all of us (HCV carriers), either pre-tx, on tx, or post-tx, having had HCV for years, we all seem to manifest the same sort of back, and/or neck problems!!!  Most indicate herniated discs, or similar findings, but all suffer with lots of pain.  I am beginning to wonder if the HCV virus, NOT just the effects of tx, or autoimmunity, is causing an erosion of our connective tissues, our discs, or nerves within the spinal column.  Look at Miles experience, with multiple disc problems, and major surgery!  How many other HCV positive people also have these spinal problems, I wonder???????  Seems like this forum is full of these problems.

Also it seems like a pretty high percentage to just be odd chance.  I don't know very many non-HCV infected friends or family members with the number of disc problems that we all seem to manifest.

This might be a good forum 'poll question', to see how many of us suffer from the same problems.  We all know fibromyalgia is a typical syndrome experienced by HCV patients, but maybe it goes further...maybe HCV really ATTACKS the joints, just like it destroys the liver!

This needs more study, any way you look at it!!!

DoubleDose

[susan400]

Thanks, Dave.  Yes, I can use some prayers!   I completed the course of 3 epidural steroid injections into my back, 1 month ago.  And, I've done 6 weeks of phy therapist (last day was on Thurs.), but not anywhere near the improvement that I am/was looking for.

Susan

[twotells]

I'm very sorry to hear about your back pain.  I have no doubt that your pain is your back, for real.  For me , what me and my Docs at the time thought was back pain from my herniated disc turned out to be neuropathy from cryoglobulinemia.  I only bring that up to say that I have been on a low dose of oxycodone (15mg/day) for over two years along with neurontin.  None of my docs has ever suggested that the oxycodone was bad for my liver- in fact, they have said otherwise.  One of the reasons I've been on oxycodone instead of an oxycodone formulation with tylenol or ibuprophen in it (like Vicodin) is to eliminate tylenol or ibuprophen which can be bad for the liver.  I hope you get some relief soon (have they tried an epidural?).  Sounds like you need prayer yourself- done.  God bless you,  Dave