SVR question about corticosteroid allergy spray.

[DoubleDose]

Have any of our SVR group used any sort of immune-suppressive steroids after their SVR?  Specifically, I have been prescribed a cortico-steroid spray for sinus allergies that have flared up, and am having second thoughts about using this spray.  If taking systemic cortico-steroids can cause an HCV viral flareup, as in Mike Simon's case, then might the nasal spray potentially allow for a resurgence of any persistent virus in the soft tissues, or salivary glands, etc?  I really am concerned about this issue, especially in light of the past few day's threads relating to this subject.  Warning's on the insert refer to possible activation of viruses like herpes, or other infectious agents, etc.  

Has anyone successfully used these sorts of 'allergy' related medications after being SVR for a good period of time?  

Does anyone have any knowledge of studies or literature regarding this subject?

Thanks for all replies.

DoubleDose

[FlGuy]

Absolutely do not use the cortico-steroid spray for sinus allergies .  Tough out the allergies, use saline, use water, use other (non-steroid)  otc remedy.

[LvdByGod]

you know i have the same question about "local" steroid shots... my dr says i should get one for the pain in my back and my trigger finger... he says it will be fine... he is my "primary" dr... what does he know about hep c???

i'm told him no way i'm gonna take any steroid anything... i don't want to take any chances of it activating the hep c should there be any dwelling anywhere in me...

(clear pcr on 4th month after tx needing to take my 6 month post tx)

sandi

[jmjm530]

I took Nasonex/Rhinocort and the like frequently during treatment and SVRd. Doc said no problem. Haven't needed anything since EOT so never asked about it. If I had bad allergies, I'd check with my hepatologist.

[jmjm530]

Related, I emailed two of my docs yesterday regarding putting off my dental surgery because of "reactivation" issues. One said he didn't see a problem but if I felt more comfortable, then put it off a bit. The other said if it was elective to put it off until the one year mark (from EOT) which is three months away. In your case, you're well beyond a year after EOT and all studies suggest that relapse (reactivation) after 1 year is extremely rare. In fact, there only appears to be one or two cases in the entire annals of Hep C and even those can't be 100 per cent verfied. As to Mike Simon, I don't think he had a "viral flareup". He certainly didn't have a reactivation. My understanding is that they found virus in his liver biopsy sample, which is very different from finding it in serum. So given the rarity of viral reactivation after one year EOT it seems to me that your concern about nasal steroid sprays are unfounded -- at least in terms of traditional relapse.

[goldyn]

Please explain about the dental work, possibly reinfecting us , how is that possible , I know Ive probably missed the first threads about this, but im going to need some work done and would like to know...

[jmjm530]

First, none of my doctors told me not to have the dental work, and others here have stated they had dental work done both during and right after treatment and they are now SVR.

As I see it the facts are these. SVR (being non-detectible six months after treatment) is durable to 98-100%. After being non-detectible 1 year, SVR is durable close to 100%. I asked my doctors a very specific question clearly indicating I was looking for some sort of near-absolute comfort level, and they replied in kind. I have no doubt that if I simply told them I was having dental surgery they would not have blinked an eye. As it is, by suggesting to me to wait another 3 months (that would put me one year non-detectible) they are just reinterating the fact that after one year the relapse rate is close to zero, regardless of what you do. Before one year, it's around one per cent.

-- Jim

[DoubleDose]

I have to think having dental surgery is far less risky, and probably closer to zero risk, than doing a course of systemic steroids, or heavy immuno-suppressive therapy.  SVR may be pretty durable, but I still have not seen any studies on how many SVR's have done extensive steroid therapy, and had no problems.  I would not want to be in that boat, and have to 'assume' as you said, that many SVR's have already done this kind of therapy with no relapse.  I do not think any numbers are out there.  And I don't like to have to assume.  

As far as dental surgery, now that seems to have no logical risk factor attached.

DD

[goldyn]

Thank you , is it because they think there might be some virus left in the gums, or from the drill, or the meds they use, what causes this 1 percent..
              Thanks i know im annoying

[jmjm530]

DD: do not think any numbers are out there.
-----------------------
Why do you say that when the studies suggest SVR is durable and that relapse after being non-detectible one year post treatment is almost non-existent? If people were relapsing from steroids after being SVR for a year, don't you think we'd hear about it?

[jmjm530]

Something to due with the immune system temporarily being compromised by the surgery. Again, this is theoretical and something beyond my knowledge base. What I do know is that after one year, relapse is practically non-existent, dental surgery or not.

[DoubleDose]

I just do not know how many SVR's have had to do heavy steroid therapy.  I do not think we can assume that a bunch must have, or even a few.  I want to see some cases, and with no impact on their SVR status, first.  Now, as for durable SVR, of course I know those numbers.  THEY have been established.  Just no numbers for systemic corticosteroid users who were SVR.  Of course the two cases we HAVE heard about, involving late relapse, were connected to immuno-suppressive therapy.  I want to hear about all the post-tx, immuno-suppressive therapy patients who are still SVR.  Then I will feel comfortable.
I need numbers.

DD

[copyman]

does the steroid warning apply to "inhaled" corticosteroids that are in Advair? i have not started on tx yet but would like to know if this is the same type of steroids. thinking about steroids brought to mind about how i think my hcv "came alive" a few years ago after a course of predisone(sp)that i was put on for bronchitis. is this possible? i have never been the same after that. thanks

[jmjm530]

Somewhere you made the jump from allergy inhalers like Nasonex and "heavy steroid therapy" :) Still, I believe the numbers are out there except for those two cases that keep getting cited. I guess we all have different tolerances in terms of what we need to feel secure.

Copy,

As far as I know there is no "steroid warning". This is something Doubledose has brought up, not me. What do you mean your HCV became "alive" after Predinsone? I don't think you mean you were SVR for a year or more and then relapsed. That's more or less what we're talking about. As to the issue of how safe Prednisone or other steroid therapy is terms other than relapse, I really am not qualified to answer that.

Be well,

-- Jim

[jmjm530]

If you're saying what I think you are, I don't think the "dormant" theory of HCV is very well recognized. Either your serum tests positive for the virus (that means you have HCV) or your serum tests negative (you don't have HCV). But maybe I'm not understanding correctly what you mean by "dormant".

-- Jim

[copyman]

sorry for not being able to get this across properly. ok let me try again, about 3 or 4 yrs ago i came down with a terrible bout of bronchotis (sp). at this time i did not know about the hcv. my family doc put me on a course of pred that cleared up that illness but i never felt the same after that. then the last few years the fatigue, etc,etc hit me and finally went back to the doc jan, 06. i just found out this past june about the hcv and this was by my family doc being on the ball and acting on a gut feeling to throw a hep panal on a blood test he was running for my cholestrol. the rest is history as they say. hope this explains it better.

[goldyn]

Thank you for letting me know . its something that im glad i am aware of now, seeing as i just finished tx a little over 3 weeks ago ,I think i  better wait atleast until my 3 month post tx Pcr comes out ....
             Thanks again Goldyn

[mremeet]

For what it's worth I took both oral prednisone at high doses (~80mg at one point) and then was given an IV of solumedrol (a powerful IV steroid) at the same time. I'm currently undergoing the VX-950 trial, and these steroids were administered in the middle of my therapy AFTER stopping the VX950 (the allergen) and during a period of riba cessation. I was about 2 months into my treatment (and so was certainly no SVR) and had been undetectable for most of that time (about 1.5 months) before being subjected to the steroid therapy. I was being tested during this process as a part of the normal VX research, including blinded PCR's. To the best of my knowledge (haven't seen my PCR's yet) I did not experience a "reappearance" or "relapse" during that vulnerable timeframe. If I had, from what I've been told by my study nurse, I would have been discontinued.

Otherwise, I'd have to concur with jim. There's no doubt that many of the thousands and thousands of SVR's out there have encountered/used various steroid therapies as a part of their normal healthcare over the years. It certainly hasn't appeared to have a significant impact on lowering long term SVR durability. If it did have a significant impact, it would have been noticed long ago and the SVR rate would not be as extremely high as it is.

Take care...

[DoubleDose]

OK, I am convinced.  I do feel better about the issue.  Thanks for all the feedback.  

DD

[copyman]

what i meant was i think the predisone may have started the hcv process with me. you know how they say it lies dorment for 20-30 yrs then "wakes up". maybe being sick with bronchitis did it, oh well no big deal i got it and that is definite.

[GoofyDad]

I get the impression of a growing body of evidence supporting the notion that residual virus can found by biopsy in a not-insignificant number of SVR's. Whether that counts as dormant is a question of language. Also, I haven't seen anything published on the fitness of those bugs.

Then there's the little talked about <b>doormat</b> virus. Often passed by engaging in unorthodoxed sexual activities on doormats with manicurists following dental work (an involving some business with enhalers that's best left to the readers imagination). Be careful out there folks.....

[jmjm530]

Copy,

Thanks for clarifying.

Lots of possiblities with your scenario. From what I've read, the classical possiblities are either that you became infected with HCV at some point before the Prednisone (were HCV positive in serum) but just didn't know it because you weren't tested. Another is that you contracted HCV sometime around or after the Prednisone shot, but not because of the shot.  

I think the posiblity you're asking about is the chance you were HCV negative (in serum) before the Prednisone, but became HCV positive after the Prednisone, and because of the Prednisone. In other words, the Prednisone somehow activated what you're calling a "dormant" virus and that others refer to as "occult" virus.

Again, I think conventional wisdom would argue that's not the case, and that you simply had the virus all along but were asymptomatic, which many of us are for years. Would I bet the farm on it? Well, fortunately, don't have a farm to bet :) Future research may hold more definitive answers.

But as long as you're speculating, other things to look into are the results of any liver enzyme tests (if any) prior to the Prednisone; side effects of the Prednisone by itself or on someone who already is HCV positive; and any risk factors you may have been exposed to over the years such as IV drug use, cocaine inhalation, tranfusions before the cut-off date, etc.

Goofy, I think Copy is talking about "occult" virus which is defined by some as being HCV negative in both antibodies and serum but having HCV in other compartments such as liver tissue. All occuring in a population of people who have never treated. In other words, not in SVRs. What you are referring to is  termed "persistent" virus by some. As to the "fitness" of the persistent virus, according to studies of the durability of SVR, they don't seem fit enough to cross over from tissue to serum. Beyond that, it's speculation as to what are the clinical consequences, if any, are of persistent virus and indeed some doctors don't believe it has been studied enough even to definitively acknowledge their existance.

Be well,

-- Jim

[copyman]

thanks for the response. i think your first senario is correct, that i had it all along and was asymptomatic. i was never sick had not gone to a doctor in many years before that (wish i did)to see what my blood tests/lft's would have showed.

[NYgirl]

DD - you are right.  It's not worth the chance. FLG said the right thing I think...tough it out if you can possibly do it.

So many things for us to have to think of huh?

[mikesimon]

We go back quite a while so I know you're smart and a nice guy as well. That being said here I go again:
I am getting tired of repeating this and I am sure that our members are sick of reading about it but.....
My problem did not arise because of steroid use. It was due to a major reduction in my immunosuppressive dose. That stimulated my immune system which then began to attack the tiny bit of HCV in my liver and in the process a lot of bystander and presumably uninfected cells were killed.
The steroid induced HCV reactivation risk to SVRs that I am aware of is a "bolus solu-medrol injection" which to my knowedge (and my experience) consists of 1 gram of steroid injected intravenously within less than 1 hour's time. I would speculate that an oral prednisone dose of 100 mg over the course of a day would be considered to be a fairly large dose. The bolus blast is 1 gram or 1000 mg given intravenously over maybe a 40 minute time interval. It is used to treat acute organ rejection and pretty much flattens out any immune response so it's another entirely different treatment than a nasal spray or a typical prenisone treatment.
Mike

[rentapen]

is he always so stuffie like that?
rent

[jmjm530]

Thanks for the clarification and I don't think people ever get tired of getting the facts in proper context. The other thing that often gets confused when people refer to your situation is the fact that you have never been HCV serum positive since your SVR and that the virus found more recently was in liver tissue, not in serum.

This is quite different from what some might term a "relapse" which is defined as becoming serum positive after being negative and IMO causes undue alarm. I hope I get it right when I make these kind of statments and please correct me whenever I'm wrong.

Hope life is being good to you these days.

-- Jim

[jmjm530]

To be clear, I'm certainly not suggesting anyone take Prednisone, and you appear to have studied its effects on the body more than I.

All I was saying is that conventional medical wisdom seems to suggest that Copyman probably didn't go from HCV serum negative to HCV serum positive because of Prednisone or other steroids.

Same thing with SVRs. If steroids like Prednisone caused SVRs to relapse, we would be seeing a lot more relapses after the six month or 1 year mark than we are.

The whole thing started with DD asking if it was OK for a long-term SVR to use a steroid inhaler for allergies like Nasonex. Like many here, I've used Nasonex with my doc's blessing.

Again, don't know much about Prednisone, but I imagine if someone really needs it, it's a matter of balancing the risks versus the rewards and bringing a good hepatologist into the decision mix to make sure that the persons HCV status is being factored in. From what you and others have said, Prednisone seems doesn't seem like a great choice for anyone with HCV, but sometimes we have to make those kinds of decisions -- like for example in "MreMeet's" case (see his post above) where his skin condition appeared to be almost intolerable.

Be well.

-- Jim

[cuteus]

Mike, I really hope DD read the explanation this time, I posted the same a while back in his other thread but he must have missed it.  Maybe this time.

For those suffering from chronic sinus problems, there is a medication, now sold OTC, that was prescribed for my then toddler due to severe allergies, NASALCROM.  It targets the t cells and prevents the immune system from overreacting to an allergen.  It is very effective and harmless.  No steroid involved.  That said,   I remember the other day that I had an epidural for sciatica, post tx, and no HCV 'reactivation'.  I think the so call activations are on people that were not truly SVRs, people with low vl, that increases with the steroid therapy and then settles back.  Long term SVR, with negative count by very sensitive PCR, is not the same situation.

it almost seems as if we are looking for anything to worry about; dental work, steroids, too much vit c, surgery, etc.  maybe some of us are overdoing the worrying part?

[jmjm530]

I agree with much of the above and would even go further to say that "reactivation" after long-term SVR (let's say 1 year or longer) is practically non-existent.

That said, I did email two hepatologists I've consulted with -- neither a big fan of 'occult/persistent' theories -- regarding my upcoming dental implant surgery.

To my surprise, the first doctor told me to wait if I felt more comfortable -- his usual reply to this type of inquirity would be "not to worry, go ahead"; and the second doctor told me to wait another 3 months (that would be the one year mark) if the surgery was elective. Again, this advice from two doctors who are somewhat skeptical of the persistent virus theories in methodology and/or  clinical implications.  

I think the apparent contradiction between their stance on 'persistent' virus and suggesting that I wait may be due to either studies or anecdotal stories that suggest relapse -- for any reason -- is improbable after six months but extremely rare after one year. I guess they are recommending I go with "extremely rare" and given the fact this is an elective surgery, I have decided to put it off for 3-6 months.

-- Jim

[jmjm530]

I should probably add that implant surgery is different from other types of dental work in that a hole is drilled into either bone or the sinus cavity itself where a metal anchor is placed. After a six month period where the anchor and bone merge, then the actual dental work (crowns) are fitted. As a layman, this seems more evasive than some other types of procedures and perhaps that is why the caution, but I'm just speculating.

[stangshelly]

hey there dd and jmjm and all...long time asthma sufferer here and stopped the steroid use before tx and will not use until svr 1+ yr or so. putting off dental 2 just as a precaution. was just in hosp for pnemonia (pneumonia)..thyroid bad..all par for the course..but liver looks great;)..week 37/72 and hanging in there..still clear of virus geno 1a...try to keep an air purifier going and assoon as coldstays cold hopefully allergy will go away..best wishes shelly

[mikesimon]

Although I would guess that HR might not care for this characterization and it may be way off but I'll offer it again because in a crude and elementary way it does explain this subject, even if inaccurately.
When the HCV was detected on my biopsy I asked my surgeon if he thought SVRs in the general population would show HCV on biopsy. He said he thought 75% would. Then I said "this isn't a new infection is it?" and he replied "no it's been there all along". Then I said "Is it like the immune system and the virus makes a kind of truce and mine got broken" and he said that was one way of looking at it. My enzymes were in the teens for 2 years without any TX and I was serum undetectable so the truce was working very nicely for me. Had it not been for my  anti-rejection dose reduction I have no reason to think things wouldn't have continued to be fine. The only caveat to this is that I do have stage 1-2 fibrosis on a scale of 0-6 and I wonder if this much damage could have occured in less than 8 weeks and, if not, it might suggest that some slow damage was being done by the 30 IU/ml HCV in my liver. But, I didn't have a relapse or a reactivation in the sense that we think of those terms. And the fact that so little HCV was found in the primary site of replication - my liver - certainly suggests that there was something limiting replication and I'm calling it a truce. So, assuming the truce analogy is a valid albeit crude way to look at this SVR thing for some, if not the majority, of SVRs then everything should be fine as long as the virus and the immune system abide by the terms of the truce. I think a little prednisone here and there would probably have no effect on the SVR status or liver health and I am even trying to recall whether I took any since becoming SVR because I have used it occasionally. But, it's a major change in the immune system that I feel may pose a realistic threat to SVR status and liver health. In my case it was a significant stimulation to my immune system that started the enzyme elevation but a dramatic
suppression of the system may also affect the truce and reactivation might possibly occur. I am just thinking out loud here and I am not claiming to have any basis for this idea other than my personal situation and my discussions with my surgeon so take it for what it's worth and that ain't much. But it seems to make sense to me. Mike

[DoubleDose]

I am sorry about the misinterpretation of your situation, and the mis-characterization of how your HCV+ minor liver flare came about.  In fact what you are saying is the opposite of what I described.  You actually REDUCED your immuno-suppressive meds, which then allowed your immune system to function MORE aggressively, and led to a chain of events which 'stirred up' some viral activity.

I am not sure how I got the opposite meaning, but my interpretation was in error any way you look at it.  Sorry for that.

The interesting thing about your situation to me, seems to be the fact that you are taking what seems to be pretty powerful immuno-suppressive medications to prevent transplant rejection, and you have remained fully SVR UNTIL those medications were decreased.  This is opposite to the concerns we have been sharing regarding steroid use and viral activation, and/or re-activation.  

In fact, it would seem your personal case argues against immunosuppressive therapy causing relapse, or reactivation of the virus.  This should be good news for those who might need to use an immuno-suppressive medication and who have achieved the SVR.

I hope that this time around I am correct in my interpretation of your recent experience, and the follow-on corollary about having no negative issues related to your SVR from using immuno-suppressive medications.

DoubleDose

[mremeet]

rev quote: "Prednisone is an absolute trigger for HCV, it is gasoline and Hi-Octane at that! It should not be used...I would steer clear of any steroid treatments. A short course may not 'activate' HCV in a SVR patient but why risk it?"

Are you suggesting a moderate amount of prednisone will cause long term SVR's to "relapse"? And/or are you suggesting reasonably short/moderate courses of prednisone are extremely harmful to most HCV+ patients? If so, I completely disagree. There's no substantive evidence of that assertion. Oral, inhalant and topical steroids (which are absorbed into the body and end up in the bloodstream) are commonly used in both actively HCV infected and SVR patients without unduly exacerbating/compromising HCV/SVR health related conditions. Steroids under circumstances warranting their use (with judicious administration), can offer incredible utility and relief for the patient who needs them. Steroids can provide very effective palliative relief for debilitating ailments like crippling arthritis and severe skin rashes. Steroids can also even be outright remedial (and life saving) by putting some cases of autoimmune hepatitis into permanent (or maintained) remission (thereby preventing the rapid onset of cirrhosis/liver failure in those patients).


rev quote" "A search on Prednisone and HCV can give you all you need to understand the risk."

The only real "risk" I'm aware of is that steroids will cause the VL to increase in those who are actively infected with HCV. But unless steroids are taken at very high doses and/or over a long period of time, a short elevation of VL in someone with a long term infection usually is nothing to become overly concerned with (most of us experience periodic 'viral flares' naturally anyway). Prednisone itself can and does have negative side effects on the body if overused, but these effects can usually be managed with judicious administration (i.e. under the care of a competent dr of course). Otherwise, the only "big risk" I'm aware of are a few isolated/referenced cases (recently posted here) of transplant patients receiving huge amounts of intravenous steroids which "appeared" to have reactivated a dormant HCV virus. But that somewhat controvertible "big risk" only applies to the few that find themselves in that situation, and even then I don't think this is a common occurrence at all.


rev quote: "There are doctors that would prescribe steroids to people with HCV but I would never take it just as as I would never take interferon. It is not worth the risk."

I'm not familiar with your health status and whether or not steroids are especially contraindicated in your case due to some special condition you might have. But I can assure you there are certain HCV/post SOC treatment related "health events" that can occur that will absolutely bring you to your knees without the help of corticosteroids. Without them a gun in the mouth would have been my other option about a month ago; never say never!

[mikesimon]

You said: "In fact, it would seem your personal case argues against immunosuppressive therapy causing relapse, or reactivation of the virus. This should be good news for those who might need to use an immuno-suppressive medication and who have achieved the SVR."
My take on this is the "truce theory" whereby our immune system and the virus somehow reach an arrangement where, if there is any residual/persistent HCV remaoning after serum clearance, the system no longer attempts to eradicate it but yet still manages to keep the replication down. This is purely a layman opinion but I cannot otherwise explain my situation. Perhaps, if my immunosuppressive dose was substantially increased the virus could conceivably begin to replicate at the rate at which we know it can replicate. As I have said ad nausea 30 IU/ml is a very low VL to be found in the liver 2 years post TX and especially in view of an ALT in the 400s. The only other explanation for such an ALT elevation that seems plausible to me is that I was in an acute rejection episode but the pathologist and my surgeon didn't believe that to be the diagnosis. It's an intriguing situation and I would really enjoy the academic aspect of it were it not me who was the patient. Mike

[jmjm530]

Rev,

Sorry about your daughter. That must be very scary for the entire family. We don't think about things like that and all of a sudden they happen out of the blue. Scary.

Mike,

That was pretty much my understanding, and while I don't want to speak for anyone else, it seems consistent in broad strokes with much of what HR has written.

What I don't quite understand is that if your medical team believes you (as well as many of us) were harboring the virus all along in liver tissue, yet you were always viral negative (again like many of us SVRs)-- then why did they decide to put you back on low dose interferon and riba solely because your enzymes elevated a little? Was it fear of reactivation (going HCV RNA positive) even though the SVR durability studies suggest it unlikely? The same question could be asked why they're suggesting I wait another three months before having a tooth implant. Or, why HR actually recommended a short course of very low dose of interferon prior to my tooth implant. A lot of anxiety about this disease and not just with us. But under it all are those SVR durablity studies and that what makes going to sleep at night a lot easier.

Be well,

-- Jim

[cuteus]

Jm, maybe your drs know you and are just trying to appease your questions by agreeing with you in that you should wait until the yr mark.  Really, if you are svr 9 months post tx, nothing magic is going to happen in 3 more months.  is not like the body has a race with the 'residual' hcv in your body and waiting for you to do anything out of the ordinary to jump out and yell: "gotcha!"   3 more months is going to accomplish what in your system? except keep your paranoia at bay.  If you are truly SVR, 3more mo will do nothing.  I mean, it did not  keep you from drinking beer, and many studies also state that alcohol makes the viral load shoot up, same as with the steroids, and it didn't in your case.  Why would drilling a screw in your jaw bone increase a VL if it was there? How?

I know you are going to wait, but there is no logic to the reason for it.\
stay well

[mremeet]

rev quote: "I have autoimmune hepatitis and HCV. The AIH was triggered by the interferon. Taking Prednisone would be like sticking a gun in my mouth, you're right."

Sorry to hear that. Nevertheless, prednisone is commonly used to treat autoimmune conditions, including autoimmune hepatitis in some cases. Not sure how yours is managed, but are you saying your doctor says steroids are a no no under any and all circumstances for everyone with HCV? If so that would be very surprising.

rev quote: "Sorry, I forgot one item to add. The post included the Med Help archive addition from a doctor on Prednisone. That was in quotations."

Yes I read the quote. There was nothing remarkable about it as far as casting an extreme warning against any and all prednisone use for all HCV patients (as you advised "jim and others on prednisone"). It was a well reasoned, moderate opinion on the conditional usage and benefits of prednisone. It didn't back up assertions of "gasoline" or proffer ominous warnings against any and all prednisone use. Did *you* read the quote?

rev quote: "My "gasoline" comment is meant to stand. We're in an area that can't be proven or disproven here."

I guess we'll have to agree to disagree there. Hope your AH is safely under control, best wishes.

[jmjm530]

Cuteus: Jm, maybe your drs know you and are just trying to appease your questions by agreeing with you in that you should wait until the yr mark.
------------------------------------
Except that they haven't "appeased" me for the last year and a half. Not those kind of doctors. You may disagree with the advice I've gotten but that is my doctors opinion and I happen to agree with them. As you know, the one year relapse figures are better than the six month figures so I'm a bit surprised you're so skeptical about their recommendation. If I remember correctly, you sweated your one year PCR as well.

Be well,

-- Jim

[jmjm530]

Again, just so clarify my doctor's opinion for anyone coming into this discussion late -- neither of them would be alarmed if I had my implant surgery now at nine months post treatment. One in fact, said it was up to me, so I can see how someone might construe I was being appeased, EXCEPT this particular doctor never had this sort of reply even when I asked for Neupogen when my ANC was 320. This guy doesn't sweat the small stuff :) The other doctor flat out said that if the surgery is elective, to put it off until the one year mark. He happens (here we go again with 'I've got a top dog doc ' LOL) but he does happen to be one of the leading hep c researchers in the country. The signal I get from him is that it's probably safe to go ahead but why chance it for an elective surgery. I will follow his thought process. Lived with a gap in my teeth for the past three years, I can live with it for another 3-6 months :)

[jmjm530]

I'll also add that our own "HR" actually suggested a short course of  very low dose interferon prior to the surgery, so that suggests he also sees potential problem, however remote it might be. But no thank you to interferon, no thank you, no thank you, no thank you :) I think I'll just wait some time instead :) That's about all I have to say on this subject and if anyone wants to have a tooth implant within a year of EOT be my guest but I'm not :)

[mikesimon]

You ask: "then why did they decide to put you back on low dose interferon and riba solely because your enzymes elevated a little?"

Well first Jim, I don't feel that going from an ALT of 16 to 456 in less than 8 weeks as my "enzymes elevated a little". I don't mean to get picky and I know that ALT can get a lot higher than 456 but my experience is that an increase like that is significant.
I believe the interferon was primarily prescribed to halt any ongoing fibrosis and I personally hope that it might reverse it.
There may have been a prophylactic aspect to it as well - despite what even the experts say about this stuff I don't think ANYONE knows for certain what to expect under strange circumstances - like mine so there might have been some concern about a possible reactivation.
It may also be, in part, the old "shotgun approach" whereby we're just shooting at everything hoping to hit a prize worthy target. I'm very familiar with this approach because it's a mainstay of the practice of law - allege negligence, wrecklessness, gross negligence, intentional infliction blah blah blah. I know you've heard that @#%& before.
Mike

[Eisbein]

I consider inplants minor stuff, and fail to see how this type of surgery can compromise the immune system to the point it won't be able to handle residual virus.

After my 9 month PCR came in, I went ahead and had an ingrown toe nail removed, root planing of two quarters, had an endoscopy/colonoscopy with 8 biopsies, an excisional breast biopsy, and a few days ago had a cyst on my arm removed that required 8 stitches...and all the above in a 6 week time frame.
The thought that the combined stress could overwhelm my immune system didn't even cross my mind.
What did cross my mind was "unclean equipment" ??
I wanted to get all this stuff done before being hit with a new deductible and co-pay in January.

Now if I had to have major surgery, the thought of a small dose of interferon looks appealing, and yes, I would be concerned.

I have another toe nail coming up, and when all is said and done, I'll wait another 8 weeks and run my 1 year PCR after 13 month.
Should it come back pos, other then my former genotype, I'll look for a lawyer in a hurry.

I find that doctors have more time before the holidays, because most people are busy shopping and prefer to do elective surgery of any kind after the New Year.
You may get extra attention during the month of December...that alone would be worth it.
I go with Ivette on this one, as I often do :), nothing magical is going to happen between 9 and 12 month...our immune system is strong, ready to slug it out with the "trash left behind", better convince yourself of that.
I talk to my immune system every day, kind of giving it a pep talk... positive thinking, you know the spiel.

Ina

[jmjm530]

Forgot your enzymes went that high. As I've said before, it seems very apparent that given the situation, your medical team is very on top of things using lastest theory, beyond what the average hepatologist would be into. I was just looking for some clarification.

Ina,

Is this the same Ina that was reticent about having her teeth cleaned during treatment :) BTW I had my teeth cleaned every three months during tx as well as other dental work, but implant surgery is a different animal. In addition to the very slim chance of relapse before the one year mark, another reason to wait is that interferon often compromises bone density and the implant surgeon not only drills into the bone but the implant itself must "take" as the bone heals around the implanted device. The latter I found out today from my NP, who btw agrees with you (but not my tx doc :)) that at this point SVR is SVR, yet suggested the wait based on the bone thing. Hey, what's the rush. Hope this finds you and your skin doing relatively well. The lack of sunshine seems to be working in my favor and just hope things stay calm when the sun reappears as it usually does in the Spring.

Be well,

-- Jim

[mremeet]

Rev quote: “I can't be treated for AIH due to my HCV status -- the treatments are contraindicated. That's my doctor talking again. He's treated 1000s of HCV patients and was trained by Dame Sherlock, who while not God she was a pioneer, if not the pioneer, in the field of liver disease. I am quite confident in his abilities. Naturally, I listen to him and follow his orders. Internet opinions I listen to also but these opinions are usually not coming from doctors (at least on this message forum). I am not a doctor and my opinion isn't the final word on anything. I don't have any medical degrees.”

Firstly, no one was suggesting you defy your doctor’s orders, nor provide you with unqualified medical advice. We’re simply discussing the viability of steroid usage amongst the general HCV+ and HCV- (i.e. SVR) population.  Secondly, although I’m no doctor nor am I any expert on AIH by any stretch, steroid usage is commonly prescribed for those with AIH. You can easily and very quickly verify this by googling AIH and investigate how it is commonly treated at many reputable HCV websites. I realize you’re saying that you personally are not being treated with corticosteroids, and your doctor apparently states it is absolutely contraindicated under any circumstances for you (for whatever reason). But the fact remains, steroid use IS commonly employed by medical experts for the (often lifesaving) treatment of AIH. Here’s a quote from just one of these sites (this one being from the janis website http://janis7hepc.com/autoimmune_hepatitis.htm):

“How is it treated?  AIH is one of the very few chronic liver diseases that can be very effectively treated by simple drug therapy in the large majority of cases. Corticosteroids (usually prednisone or prednisolone) are the standard treatment. Azathioprine is often used as well, since this has an additive effect which allows for lower doses of steroids to be used, but about 10% of people cannot tolerate azathioprine for various reasons (see What types of problems are likely to happen with this type of disease? - question 7). Initially, moderately high doses of the steroids are required for a few weeks or months to get the disease under control quickly. Thereafter, and especially if azathioprine is tolerated, the steroid dose can often be reduced to quite low levels. Three recent studies (in the USA, Sweden and Germany) have indicated that, for most people with AIH whose disease is well controlled, life expectancy is not significantly different from that in the rest of the population. The important thing is to take the tablets exactly as prescribed by the doctor.

What do the drugs do and how do they help?  The two main drugs, corticosteroids and azathioprine (see How is it treated? - question 8), dampen down the autoimmune reaction. In a sense, they act as "anti-rejection" drugs and indeed they are also used (among other drugs) to prevent rejection after transplantation. Other, newer, "anti-rejection" drugs are showing promise for people who do not respond to this standard treatment.”

And…

“The short- and long-term efficacy of immunosuppression in patients with autoimmune hepatitis has been demonstrated unequivocally. In many cases, however, patients are not treated or treatment is begun too late because the diagnosis is missed…Although the clinical findings can vary substantially, a chronic fluctuating course is most common…Initial therapy usually includes corticosteroids. Unless the disease is very mild, therapy should be started at about 1 mg of prednisone per kilogram of body weight daily. When serum aminotranferase concentrations start to fall, the dose of prednisone should be tapered (at a rate of 10 mg per week, down to a dose of 30 mg per day, and then at a rate of 5 mg per week, down to a dose of 10 to 15 mg per day). Adding azathioprine can help keep the required dose of corticosteroids low. Azathioprine takes several weeks to work and should therefore be initiated as soon as the diagnosis is certain.”

If you don’t mind my asking, is your AIH sufficiently mild that you don’t need steroids? From what I’ve read the severity of AIH can vary tremendously from one patient to another. In fact, it often goes undiagnosed in many people with a lower grade severity of AIH. In those with a sufficiently mild case of it, it appears that steroid use is sometimes not warranted because the immune system's attack on the liver is not sufficiently aggressive/destructive to warrant the VL increasing risk of prednisone. But it seems that if the AIH is aggressive enough, steroid use is definitely warranted (and commonly employed, as evidenced above). Otherwise, the immune system can destroy the liver much more rapidly than the virus itself. Your previous statements give the impression that your very experienced doctor strongly forbids and condemns the use of prednisone for the treatment of AIH. Does he consider this true in all cases, or only in your case?

rev quote: "Clearly, the risk is there of activating the dormant virus (the discussions the forum has had on occult HCV dovetail into this). It's happened. How many people? I don't have a clue. Rare? Probably. There would be no studies on this particular subject. How many SVRs use Prednisone for any length of time? In a thread above this, on Prednisone, the poster's doctor warned against another course of Prednisone (this person had relapsed so has HCV) because of the risk.”

Firstly, settecasi1 was not an SVR. Secondly, only one of settcasi1’s doctor’s warned him against a *second* course of prednisone (but did prescribe it for the first course), his gastro did not.  settecasi1 quote: “Before I took it I called my old Gastro doc to ask if the prednisone was OK. He said yes. At my rumitologist follow up he said it was good I responded because he would not treat me again with the prednisone due to the chance of negative effects with my HVC. At my 6 month relapse appointment with the old gastro doc I mentioned the prednisone again and he said it was not the cause.”

Also, the concept of occult and/or low level viral persistence in SVR’s is not fully established/accepted within the medical community yet (contrary to what you might read here). And the accompanying/adjunct theory of viral resurgence in SVR’s due to the use of immunosuppressive therapy is even further away from being proven. There are only very, very few isolated cases under extreme circumstances where this has “appeared” to happen…far from being conclusively proven. Lastly, even if it were to be proven in the future, it is clearly, clearly an extremely rare event even in the face of the common use of a wide breadth of steroid use by the SVR community. (i.e. the long term SVR durability is almost 100% after a year of clearance, despite these people using steroids as required during their normal healthcare).

To wrap it up, steroids should never be used unless they are the only viable course of effective treatment AND where they are absolutely necessary and/or where the likely benefits outweigh the likely risks. There are definite risks associated with the use of steroids, even for those who do not have HCV. But the fact remains, there are very legitimate, appropriate and even lifesaving uses of steroids both for those with HCV and without (SVR). Steroid usage is not absolutely forbidden or contraindicated in any and all HCV/SVR patients; it can and is successfully employed for the betterment of many of these patients where its use is warranted (including myself!).