Posting for Beamish @back surgery, steroids affecting SVR

[Lady Lauri]

  beamish wrote.........now if you will allow me to borrow yr thread......I can't seem to post a question on my own..
  i visited "The Spine Center" yesterday for an informed analysis of my back and leg pain...i have degenerative lower disc&some rupture...serioue sh!t &apparently a major operation if corrected surgically...doc has recommended a nerve blocker(?) called neurontin....(this is from his script scrawl)...he pooh poohed sx's(will it affect my sex life!!!???) ,when pressed admitted it might cause drowsiness but would not allow that any other functions,feelings would be impacted...my options are extremely limited by the fact that i do not want major back surgery,nor are they really recommending it...said my reflex response,fitness and gen'l good health appear relatively unaffected...my only complaints are less active lifestyle and near constant  debilitating pain...esp. in leg&foot...alright now onto the meat of this post..when the question of steroids and my SVR status arose,he stated quite unequivocably,that i should never use them Again...i have resorted to shoulder relief on numerous occasions-never more! this doc previously worked in liver industry and considers my hepC merely in remission and believes that cortisone/steroids Rx could cause the nasty buggers to raise their ugly heads..".I am undetected one year post trx.." i said..."doesn't mean it's not still there,just suppressed"...I left the Spine Center slouching  and decidedly deflated..my back is sorta bad yes,but my confidence in SVR  has been brought fully into question..@#%&***%$#***!!!!!!!!!

[frijole]

I know a few people who have taken Neurontin and I don't recall them saying it made them drowsy but I will ask tomorrow at week.  Darn it -- the construction business is hard on you!  I have not heard that you can't take steroids is - what -- you have been on treatment? -- you have ever had hepatitis C -- or because you are clear????? I guess I will google it.

I am sorry to hear of this, my friend.  I will be back after googling.........
frijole

[frijole]

Okay, here is what I find ...

From Hepatitis-Central…

Steroids can cause liver damage in even healthy people.
Steroids also suppress the immune system. As steroids are heavily processed by the liver, it is probably best to avoid them.

This from an article on transplantation....

Chronic hepatitis C virus (HCV) infection is the leading indication for liver transplantation. Transplantation outcome is often compromised by a rapid re-infection of the graft. Several factors have been implicated in the increased severity of recurrence, including steroid-based immunosuppression. Evidence suggests that steroid boluses used to treat acute rejection are associated with an increase in HCV viral load and the severity of recurrence. Two possible mechanisms for a steroid-mediated effect on HCV viral loads can be postulated, the first being a direct effect of steroids on the virus by enhancing its replication. The second, an indirect effect due to the suppression of the HCV immune response, allows unrestricted HCV replication


So far my googling shows that it helps replication ---- but ifyou are svr is the only problem that it is processed  by the liver….

So this is all I find.  Steroids are processed in the liver, thus hard on the liver.  Steroids can increase replication -- but that is if you already have the virons.  If you are clear, it seems to me that the major problem is that it is hard on your liver - not that you are going to get hepatitis c again.  They use steroids for liver transplant patients.  Many of them have not treated for hep C.  It increases replication in those with C.  It doesn't create it.

So I think you hve to weigh the odds.  My guess is that an occasional steroid injection is going to be more benificial than not.  

I will get back with you on the neurotin tomorrow -- I mean Monday
frijole

[beamishboy]

thanks bean..i did a goggle on neurotin myself..it's use runs the gamut and there are some serious sx's and issues.-even class-action lawsuits(gulp...!).i will be taking a rather small dose -100mg-  just have to wait& see what the cat drags in...

[fightit]

Oral steroids are the real culprits. I am told that nerve blocks do not have the same effect. At least that is what the anesthesiologist told me. I plan on having a block done for nerve pain in my leg and lower back. From what I understand topical steroids and nerve blocks are much different from the oral ones as far as the damaging effects on the liver.
Ask your GI or hepatologist.

[desrt]

Most of us will never be bolus dosed with steroids. There is one case I've heard of where a patient who had been SVR for several years was given this type of extreme dosing and briefly showed a detectable viral load which later went back to undetectible. As I recall, there was also some question about the sensitivity of his earlier SVR testing.

[mremeet]

I took steroids (prednisone) AND received bolus steroids during my treatment for HCV (to control a bad rash I had). I remained UND during the whole thing and went on to SVR later.

[merryBe]

sorry about your back, but neurontin is not liver friendly, nor are steroids.

I didn't want the harm of neuontin, not to be on pain meds, so I choose to try steroid for the low back, and he hit my nerve and left my leg throbbing for nearly 3 years due to the damage.
If you do resort to this do NOT let them knock you out because your only defense against having a nerve permanently damaged is if you are awake and it happens you will feel the electrocution and can tell them to back off....they say their scanner helps them place the shot...but it doesn't show everynerve and 1/8 inch difference can mean success or crippling.

If you can get a pain clinic to do an electrical implant device on you, when you turn on the small current they produce this can block all pain. However, you have to not be a "hyperallergic" type like I am to have on. If you react to plastics and latex and such then the wire implant can become infected. Still, this is something worth considering if you are in cronic inoperable pain.
maryB

[beamishboy]

thanks for all your imput...i am still researching my options and like jmjm always says-i will get another opinion..i have been examined,x-rayed&scanned for 12 years..5 orthopedic surgeons,2 physical therapists,1 chiropractor,2 accupuncture specialists...the only relief i have found to date has been pain meds& an accupuncture technique wherein he sent an electrical current down my leg-it Worked miracles,but alas- did not last the nite......but i will find a workable solution with y'alls help...Heck i slayed a dragon-with the inestimable help of this forum...tommy

[Deb_c430]

I have posted here before about a head on collision I had, and  the use of steroids.  I would strongly advise you to find another solution,  Steroids cause major havoc on even a healthy liver.  I had both both oral and intravenous.  I truly think and so did my original GI, that they affected PCR's and caused both viral load and alts/asts to become effected. I understand the pain issues,  have been dealing with them also.
  Best of luck and Congrats on kicking Viral butt!
Deb

[merryBe]

hi tommy, well like I said, what the implant does is it allows you to have a wire permanently implanted. THen you have a little remote device you carry like a cell phone on your person.
You can ergo turn this current on or off throughout the day as your pain dictates.
this is the only drug free way that seems to have success.

the thing about nerve damage is it can take years if ever to settle down, so you are better to find permanent ways to deal with it. Which obviously accupunture or massage are only temporary.

Your pain specialist should be able to discuss electrode implants with you.

[Deb_c430]

nerves only regenerate one cm a month if flatlined, and even after regeneration can still cause painful activity, Depending on the type of damage, ie motor or how affected. Nerve pain is hard to deal with, agree with merrybe.

[alagirl]

I posted on your question (ahem, about 800 times apparently, sorry) on the other side.  The latest study I can find shows that there probably isn't a risk of steroids helping to replicate HCV, but that it can keep the body's own immune defenses from working as well against HCV.  So for a doctor who believed in the "suppression only" theory and not the "cure" theory, I can well see how he might caution against ever taking steroids again.

I personally subscribe, I'm pretty sure anyway - haven't had the final election yet - that a cure is a cure.

However, my hematologist wants me on 40mg of prednisone daily NOW, during treatment, because prednisone is one of the few things that apparently helps slow down hemolytic anemia (along with doses of gammaglobulin.)  And I am having transfusions now at a rate of of two to three units of blood every two weeks due to the ribavirin eating my red blood cells like little pacmen at a video arcade.  I just got out of the hospital for the fourth time on Saturday.  And of course the danger of too many transfusions is an excess of iron in the system that causes end organ damage.

I am also afraid to take the prednisone though, fearing it may undo my current treatment success.  Because despite the difficulties, I have been UND since my first viral load test at week 4.  So I'm looking for an expert answer on this one too.  I did post a link to the study I found to your post on the other side.  

I am amazed by how much pain relief is provided by the prednisone though, I haven't had to take my usual pain medication (treatment gave me pretty immediate RA, and 80,000 units of epogen doesn't help my bones any) at all today and I feel great.  But my sole purpose for being put on this is to lessen hemolysis.  I just don't want to find that I've sabotaged my treatment by taking it.

[Deb_c430]

The latest study I can find shows that there probably isn't a risk of steroids helping to replicate HCV, but that it can keep the body's own immune defenses from working as well against HCV.  So for a doctor who believed in the "suppression only" theory and not the "cure" theory, I can well see how he might caution against ever taking steroids again

Isn't that kind of splitting hairs? If it does not worsen HCV then it must cure it? Sorry this study makes no sense to me.  If steroids can damage a healthy liver, then how can it NOTcause havoc in already damaged liver?  

I would def do what Doc tells you,  obviously they think your anemia problem trumps HCV now, as was the case for me. Have they tried you on Neupogen yet? Helps bones to produce WBC, but it also makes them hurt.

I wish you all the best,  All this trying to understand and find the right answers can make a person crazy! :<)
Deb

[beamishboy]

merry- thanks for the info,input and advice...i do not really want an implant just yet,but it does sound effective..i am taking the neurotin as of yesterday ,but already -"i do not like green eggs&ham".....seriously affected my nitely 'romp' inthe alltogethr(if you catch my drft...) and i over slept,then awoke with a v disturbing irritation in my eye??? i am growing less&less confident that this is the medication for me....also VERY concerned about it's effect on my liver...for the interim,i really believe some form of pain med is the answer..ANY particular that you find least  bad?.....vicoprofen,percocet,codein,oxycodone?...i am searching for a pain managemnt specialist right after i get off this site...
Deb-thanks for the kind words& the Congrats...it was a monumental accomplishmnt that i am ever grateful for...i also appreciate yr concerns with ill-effects of these meds...and i will take due consideration,CHEERS
     alagirl-your situation totally dwarfs my own...i WISH you All GOODLUCK fighting the symptoms/side effects you are experiencing while treating the hepC...KIck butt girl....you are soo impressive and strong them bugs don't stand a chance!

[merryBe]

everyone keeps saying the opiates....I finally broke down and now force myself to take a half a one twice a day..but if I get my gall bladder out, maybe I can stop that.

they offered to put me on oxy or morphine 10 years ago...or naurotin etc....
I declined....because this hurts so many organs...even though I didn't know I had HCV, I knew enough about medicines.
there is a fine line, you want to have good bowel regularity with liver disease. Meaning if you take an opiate you need to also do lactulose or inulin or something to keep your good bateria alive and bowels moving. You also need to keep in minimal as it can effect heart/respiration/and cause lots of organs to get sluggish. Really they slow all systems down to a crawl.

If you still with the neurotin, the sides subside I'm told. I ended up trying Ultram...which they said was less liver issues and non-addictive, but which still elevated my liver enymes when taken as directed.
So now I take only 2 a day, not the 8 they prescribed.

As long as I don't try to lift anything heavier than a cat I'm OK....but thank God I have a hubby, who even carries my laundry to the laundry room so I don't have to lift a basket...

Of course, not everyone can avoid all motions that set off extreme pain, so you do what you must.

If it is any comfort, sometimes things do get better over time.
My four leaking discs have stopped inflaming as much my back and the spasms knots are mostly gone now. It is the protein in all the ruptures that causes this imflammation and pain.
I think a lot depends on whether the spinal cord got impinged and/or bent. My Discs are better, but the cord itself is still bent and that means even a heavy handbag can set off sharp electrical stuff.

If you do go to a opiate type try to get them to give you one without the tylenol....they don't like to do it...espeacially for HCV people (because they think we all may have drug problems) but I think if you have no abuse history it may be easier. Hang in there.

mary

[Deb_c430]

Percocet is a less strong oxycodone,  honestly I found anti imflamatories worked better for me.
I was just sort of thinking about this, and wondered if the new drug they are treating fiber myalgia would help?
Mind you I have no knowledge of this at all,  I don't have fiber myalgia, but a good friend told the symptoms are very similar.
I do try and stay away from pills,  I found water therapy helps me a lot, light stretching to build supporting muscles.  
Spinal cord injuries are no fun and nerve damage the worse.
I feel for you and mary.
Good luck!
Deb

[beamishboy]

Today i  helped load then unload,sticker&stack 500 board feet of 18" wide 12 ft. long pine planks-for my upstairs floor...I am building a house and will not 'go gently into that goodnite'...my back works o.k. but my leg and foot ache wicked after hours...i cannot stand or walk long,esp. on concrete/tile floors ...this neurotin makes me uncoordinated,stumblin,near stuttering slowpoke...it is very noticeable and constant..i took pills this morning and after 2 days of zoombie i am stopping now.!.already got doc appt for tomorrow& i am askin for referral to pain managemnt specialist....i really need to keep moving,working & carrying my own clothes basket!..my hats off to yr good hubby....and i hope your condition improves

[Deb_c430]

Ok I am tracking now,  I get the same thing in my foot and ankle calcaneal fracture, Also I had a flatline  nerve that caused drop foot, though it finally came back. Nerve pain is bad and pain management a good idea.  
I feel the same about working and motivating,  zombie is no way to live.   Let me know what they say,  
Good luck!
Deb

[frijole]

I just shiver when I read of all this ongoing pain you are all suffering from . It sounds like there are no good answers, only slightly better answers.

Tommy,  I think your days of loading and unloading trucks of lumber may be over.  One of my co-worker's husbands has endured 3 back surgeries, has used neurotin and various other things.  He absolutley has had to adjust his life -- NOT load and unload his drum set from the car. NOT pick up the dog.  NOT overdue on yard and pasture work.  Best you find someone from the workforce interested in making a few bucks to do the heavy lifting!!!!  My husband is a carp and is 58 and has some arthritis.  He also just isn't near as strong as he used to be.  These AH's want 10 foot front doors now adays.  He installed one that the jam was 10 ft tall but the door was only 8 feet tall and they had to take it out and they are waiting on a taller door.  STATUS!   You might think about that surgery.

All I found out on the neurotin is that it is most effective against nerve pain, not other pain.  It is not effective at 100mg (but it sounds like you know exactly how it affects you).  And it helps on fibromyalgia.

I hope you can find the answer, but there are an awfullly lot of pain management docs who are nothing but drug dispensers.....  be careful.

Hey -- it this house on the lake lot? and it it for you?
bean

[Deb_c430]

I have been told that nerve pain is the hardest to control,  I have to agree, again I have found  that you have to find a balance to not move through it, makes it worse, to move to much through it makes it worse. Finding a balance is what works for me.  Again I find water therapy very helpful, meditation and trying to control the nerve. I am not talking Dalai Llama meditation :>)  Again the anti imflamotry drugs work best for me. Also have you talked to a Podiatrist at all? Could be some sort of shoe support would help, at some point they think I will need one but I am to stubborn and to vain to wear it now!
Deb.