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Posting for Beamish @back surgery, steroids affecting SVR
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Posting for Beamish @back surgery, steroids affecting SVR

Beamish posted
   ......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..@#%&***%$#***!!!!!!!!!
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Avatar_m_tn
I suppose it really depends on who is giving you the advice and what are their credentials.

As you probably know from being here awhile, a lot of docs just don't have a clue what they're saying half the time. So, if it were me, I'd pose the steroid question to at least two top-drawer hepatologists and see what they say.

My guess is you will get the green light to take steroids because you are one-year SVR and the literature only shows a handful of relapses that might have been related to steroids or similar. It's really a matter of weighing risks versus rewards, but in order to do that, I think you may need more input as to the validity of those risks.

Feel better,

-- Jim
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Avatar_m_tn
doesn't mean it's not still there,just suppressed".
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According to two well-known hepatologists I consulted with -- their opinion is that "it's not there" at least in the clinical sense. They did not feel that any SVR threatening virions are "suppressed".  No doubt, two sides to this story, and much discussion here on similar -- but in your case, the important thing is should you use steroids or not, given your condition. And, if you use them, how much should you be concerned. I think after consulting with a couple of top-hepatologists that they will say you have nothing reasonbly to be concerned about. But the prudent thing would be to check.

-- Jim
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151263_tn?1243377877
Not trying to talk you into taking steroids, but I took a sh!tload of steroids actually during my treatment (VX950 trial), and early on during my treatment too. And not only did I take lots of prednisone (up to 80mg daily) I also received an IV jolt of a drug called solumedrol which is a very powerful immunosuppressant. And yet I remained UND all along during my month and a half stint of steroid use and went on to SVR just fine afterwards with only 41 week of tx (and with reduced riba dosage throughout too). I also know that of all the 1000's and 1000's of SVR's out there now, many have taken various immunosuppressants (including prednisone), and many have experienced immunosuppression from serious illness, and yet have not relapsed. SVR is extremely durable - *extremely* durable. I think the fear of prednisone is usually way overblown in those that have firmly and unequivocally established their SVR status. There are extremely rare, isolated cases of "relapse" reported under the most extreme circumstances, but even those extremely small anecdotal examples could have other explanations for the so called "relapse" after achieving SVR. Prednisone should never be used unless absolutely necessary, even for those with no history of HCV. But if I suffered from some kind of seriously debilitating health problem and prednisone was the only real way to treat it, I'd judiciously use the prednisone as needed. I would be wary about it, but if push came to shove I'd do it if I had to. And I would feel confident that I wouldn't be relapsing based on my earlier experiences with prednisone and based on the general facts surrounding SVR durability as described above.
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Avatar_n_tn
Lauri- thank you for re-posting my question..Much appreciated sweetie....i owe ya one..now if ya ever need any frogs gigged..........as leonard cohen sings-"i'm your man"
jmjm-yes i have been privy to  discussions of the immunosuppressive nature of various steroidal trx on this site-and did generally pay attention....probably once a year-during my stonemason season-i develop rotar-cuff pain..pain so bad that i resort to a cortisone shot directly into the joint...i am concerned that this option will no longer be 'doable'.....furthermore,my particular back injury may improve with some kinda similiar injection....if this doc's concerns are valid i will be limited to the general ,run of the mill, pain killers and i have no problem with that, for now...i can actually function at capacity while just slightly medicated.. i enjoy,crave and relish full-on physical activitys (with modicum of age related realism) and thus maintain muscletone&cardio vascular good health..thru work......what am i trying to say?All things considered- are  pain meds bettr than steroids for an old heppr like myself?thank you
mremeet-your story certainly begs the question..and i will certainly ask other doctors about this issue...Have you ever heard of or taken Neurontin ??......i gotta admit to being just a tad leery of everything at this point,but also willing to try everything..i'm sure that doesn't make much sense except in view of my current pain-thank you
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254544_tn?1310779332
The steroids were a big issue regarding whether or not I could re-treat and that was one of the reasons why I was sent to Shands.  Doc Nelson has flat out told me that I cannot take Prednisone or any other steroid if I have an RA flare for the first half of my treatment.  After that he seemd to think that they would be o.k. to take.   You may want to call him and feel him out for his thoughts on steroids.  I don't think they will affect your SVR but they will affect treatment.  He would definately be the man to ask.

Mouse
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250084_tn?1303311035
  Hi ya! This post is for beamish, he couldn't get a post to post today :}    It's his 'post'.

  Altho.... I will ask Dr. Nelson his take on it Friday, as you mentioned him.
Hope your Hgb's holding up.                    
                                                                LL
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Avatar_m_tn
B: What am i trying to say?All things considered- are  pain meds bettr than steroids for an old heppr like myself?
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Not sure if this was rhetorical or addressed to me, but ...

My previous answer assumed that steroids were the much preferred treatment, and the issue was whether or not they would bring the virus back after being 1 year SVR. In brief, my answer was -- in addition to seeking a more knowledgeable opinion -- that I personally didn't think much of a risk of relapse, therefore go with the medical advice of taking steroids. That said, I have no position on whether taking steroids is better for your condition than let's say other other pain meds. I have no knowledge in this area and was just assuming that's what your doc told you.  In other words, that you should make the decision to use steroids or not, irrespective of the relapse issue.

-- Jim
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250084_tn?1303311035

  Posted this on other side too.....not sure why I did both, LOL. Friole answered on other side also.

                          
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264121_tn?1313033056
I am so glad you guys are posting on this because I have the same question.  Which I posted two days ago. And nobody answered it so I'm going to ask again, lol

My hematologist wants me to take 20mg of prednisone 2x daily as hopefully a way of helping with my hemolysis so that the two of us don't have to keep meeting up over the IV bag of packed red blood cells every two weeks.

There is a 2007 study on this matter which seems encouraging.  It set out to replicate and clarify the role of high dose steroids in HCV replication following liver transplantation as there was evidence of swift HCV infection in newly transplanted patients, particularly when given steroid boluses in attempts to tamp down organ rejection.  The study seems to show that the reason for the replication was not that the steroids themselves helped the virus to replicate, in fact, there was some miniscule amount of help provided by the steroids if I'm reading it correctly.  The study seems to indicate that the probable reason for the quick graft infection following surgery where steroids are used post transplant is that the steroids suppress the body's natural HCV fighting abilities.

Which would mean that for beamish, the steroids would be ok, but for me, taking them during treatment while I need my body to fight them might not be so good?

http://www.annalsnyas.org/cgi/content/abstract/1110/1/439

Now, I have seen two different studies on this, which were done earlier.  Can't find them right now but if I do I'll post them.  One advocates using 5mg per day of corticosteroids when treating people with HCV who have RA, as it helps them tolerate treatment.  Of course, 5mg is a lot less than the 40mg my hematologist wants me on.

The other study said a lot of poorly worded things that seemed to say that large doses of steroids during therapy could interfere with the success of treatment.

So I have the same concern about the steroids and I am wondering whether to follow my hematologist's advice on this scrip or not.  Mremeet's post makes me feel a little better... but only a little.

Since I was released from the hospital Saturday I have been comprimising with my doctor by taking 20mg daily (half the dose prescribed) - only, he (the doctor) kinda sorta doesn't know about our compromise.  I've written to a specialist, finally, to try to get a consult so I can get this mess sorted out (my treatment plan, not just the steroid issue - sorry, beginning to lose my mind here).
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264121_tn?1313033056
Oh yeah, it definitely IS a nice benefit of the steroids that are probably even at this moment sabotaging my treatment that my pain has decreased exponentially since starting them in the hospital last week.  Not having to take pain medicine means I can actually work some, walk around, I actually put a casserole in the oven tonight...  

Ok.  It was stouffer's, but I pre-heated the damn thing and took the food out of the box.
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Avatar_n_tn
alright already-you cooked(sort of) and we are proud of ya-(-:)=   seriously,glad to hear that the pain has diminished for you..i am rooting for you to complete trx and SVR...!
i started taking neurotin yesterday (it is a non-steroidal nerve block,originally developed for epileptic seizure control-whew,that's a mouthful...)  and a mouthful,literally...they got me taking 2 pills 3 times daily..initially doc said he was prescibing 100 mg-turns out ,that is the dosage per pill,but i am taking 6 friggin pills and pharmacist said 'we 're gonna up that in 15 days!!....i told em i would just do a cereal bowl full....Now on day2 of these broad spectrum,use 'em for everything&anything,ohh and sleepin aid too,strange brew,why they work know one knows medicine(?)....and i am almost certain that this cure is worse than the problem...my research on neurotin brought up a lot of disturbing evidence..it seems like their using an elephant gun to hunt squirrels-ohh yeah,the stuff can make ya a bit nuts..also memory loss,word retrieval problems....etc,etc.....and something no one mentions-it affected my sex performance/pleasure- already,i am pissed!!!!!!
i will give this trx at most one week...nobody&nothing is gonna mess w/ my mojo
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264121_tn?1313033056
a lot of the "psychoactive" meds have many different uses and docs don't always understand why.  Neurontin is not personally one of my favorites not because I think there's anything harmful about it per se, it just didn't work for me and I didn't like the way I felt when I was taking it - it made me a little confused, more than usual I mean...

Because I have migraines, I have tried virtually every psychtropic, anti-seizure and anti-depressant med around because these same meds are thrown at pain, seizures, migraines, depression, mood control, whatever.  So when you have chronic migraines, they try each one as a daily to see if it will help.  So far, topamax is the only one that's helped with my migraines.  They can't really explain why it helps migraines either, just that it does.
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394687_tn?1290924440
ever tried zomig - works great for me.

FYI - I'm on tx and take 5 mg prednisone everyday for RA (14 years now)
I also take the bio drug Enbrel - all three of my docs said go for it - that they are not to sure what may happen. But seems to be working out fine so far. My Alt went from 164 to 37 in 3 weeeks - waitin on the VL.
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250084_tn?1303311035
Girl, you must be back reading a lot of post :) Was surprised to see this pop up,lol.

Whats Enbrel? (don't say google it, hate googling:)
Also, I always thought steroids were only to be done in short periods, spurts, now and than. And to taper off? My only time on prednisone, I was wicked !!

LL
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Avatar_f_tn
Believe it or not, but I can, once again, relate to this.  About 4 years ago, after 6 mon. of absolutely the worst agony, I had an outpatient microdiskectomy.   By that point, I'd had about 3 or more TX's under my belt.  I had a herniated disk at L5-S1 w/no remembrance of having any injuries to have caused it.  I went through all the physical therapy, pain meds, times 3 steroidal epidural injections all with no resolving the problem or the pain.  I also, started out with a chiropractor to see it that would help.  So, I tried what seemed like everything.  In one simple outpatient procedure and a 1 inch (hardly noticable) scar left on my lower back, the probably was about 98% resolved in 1 day, I am not kidding!  My father went through the same thing, suffering something terrible, only his was L4-L5 and S1.  Had the outpatient microdiskectomy and was completely back to normal in 1-2 days and he's 74.  But, you know what, he's back working out at the YMCA with my mom.  This surgery is far from what I'd qualify as a major surgery.  In fact, they even offered me light anesthesia and a spinal.  I didn't go for that and went with the general anesthesia, but the whole surgery was done with in about 1-1/2 hrs from putting me out to recovery room.  I spent 4 hrs. in the outpatient wing of the hospital and was out of there.  I am not saying that everybody can do this, or that everybody's back problem would be able to be handled in this way, but I did want to let you know of my success story.  The steroids actually caused me to have more pain because the pain medicine doctor nicked a ligament during the injection and proceeded to show me the sonogram of where she did it after she was done.  2 out of the 3 injections were more pain for me having it done than it was worth.  

Susan
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394687_tn?1290924440
Whats Enbrel? (don't say google it, hate googling:)
Also, I always thought steroids were only to be done in short periods, spurts, now and than. And to taper off? My only time on prednisone, I was wicked !!
_____________________

Enbrel is a biogenetic injection for the RA (A TNF blocker) I have been on it 4 yrs. I did find a study that supports it as a 3rd med for HCV - Seems to be working OK - but just took my third Peg. Find out my VL tomorrow but my Alt took a great dive.

Also my pred is maintainance - I'm hooked, weened down from 15 p/d - took yrs. When I'm done with tx - I may try to get lower - but it sends me into major flares and I tend to pass out all the time - not good when you have big horses :-)

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