Post TX Ailments (Colds, Flus and the Like)

Has anybody noticed after finishing treatment that they literally have no immune system left whatsoever?

I've been getting every single cold, lung infection, brochitis and pneumonia that I come within 50 yards of.  I NEVER got sick like this pre-tx.

I'm wondering if perhaps it completely wipes out our immune system so that we are starting all over again like a brand new baby or something?

Because honestly...I'm so sick and tired of being sick and tired it's ridiculous.

Deb

[hippygem]

Since I did the tx in 2004 I have found that I dont catch the flu, or common colds etc.
The fatigue/tiredness is still there, getting worse, so is the itching and nausea.  Im a relapser with fibrosis 2 (was 3 b4 tx).
Did you clear the virus?
If not, maybe you should be taking some supplements.

[hippygem]

Hi again, lol, how are you going anyway, you were the first person that answered my first post in this forum over 2 and half years ago.  I didnt realise you had a 7 after your nic.  Thought you were someone else.....
Nice to chat to you again and hope all is well with you in your life at this time.

Cheers

[mremeet]

Just a pure guess, but maybe your immune system hasn't gotten used to flying solo yet without the drugs  constantly contributing. Both interferon and ribavirin are immunostimulants and being that you took them for so long, it may take your body awhile to "re-learn" how to properly regulate its own immune response to foreign pathogens again. The body normally produces its own interferon and uses it to fight infections. So I could see where the normal production and regulation of it could be temporarily interfered with by taking synthetic interferon for 72 weeks. I know when I was on prednisone, which is an immunosuppressant (basically having the opposite function of interferon), I was told it was very important to taper down my prednisone dose slowly over weeks. The reason this was important is because prednisone is a corticosteroid, and taking synthetic corticosteroids causes your body to reduce (or stop altogether) its own production of corticosteroids (produced by the adrenal glands). The body actually has some type of feedback mechanism that detects how much corticosteroid is in the blood, and will constantly adjust its own production to maintain optimal levels. But it takes time for the body to react to artificial changes in corticosteroidal levels (caused by taking or by stopping prednisone). So if you were to suddenly stop the oral prednisone without properly tapering down over time, it can cause all kinds of awful problems related to severe immune responses, again because it takes the adrenal glands time to kick back in and for the body to kickstart and normalize its own corticosteroid production.

Anyway, I can see a possible partial analogy between the body's interferon production vis-a-vis taking synthetic interferon, and the body's corticosteroid production vis-a-vis taking sythetic corticosteroids (prednisone). So maybe it isn't so far off that after taking IFN+riba (again both immunostimulants) for 72 weeks might have left your normal interferon production a little off kilter temporarily. Hope you're feeling better soon, and any news on your SVR status yet? Personally I think you got it in the bag.

[Tallahassee]

I'm wondering if perhaps it completely wipes out our immune system so that we are starting all over again like a brand new baby or something?
----------------

I think you are into something.

One of my immunoglobulins (Immunoglobulin G) became low (used to be normal in 2004).

The Internet says that it is typically observed with babies who was not exposed to germs and allergens and did not develop immunity.  Also, it could be secondary to chemo therapy and such.
Now I hope that gradually I'll "re-construct" my immunity eventually, but for now I'm planning to do a flu shot :-)

On a side note, I’m usually a pretty "tough cookie" and not really sensitive to floating bugs... But since my exposure to Interferons was rather extended (~10 yrs), it is hard to say if Interferons made any visible difference.

All the best!!

[honey11]

Seems like I was pretty much back to same as before my tx.  I usually would get the flu or cold about once a year and then during tx,,,,nothing at all which was great but took about 6 months post tx and I caught the flu.  Also NY,,,I know you did 72 weeks and that is a long time and you could very well still be trying to build back up your immune system. Hope you get to feeling better soon!

[sunspot]

I had no colds/flu while on tx. After tx, I did have one very nasty cold/flu that lasted 14 days. I missed 7 days of work because of it.
I’m so sorry you have had to catch everything that comes your way. Bad enough you had to do 72 weeks tx.

[nygirl7]

Hippygem I remember when you first came on - I thought you had a really cool name and I remember answering you, isn't that funny how your brain can remember things like that but not what you had for dinner last night?

So it seems like in general altogether over that we DO have to build (relearn) how to have an immune system working.  I know that HepResearcher was very positive with Kalio (and WHERE is she?) that she had to taper down the interferon.  If you use the pred. as a guide it makes sense. After being on this medicine for so freaking long (I never had one cold or flu during it either for all 72 weeks) I wish someone had already learned this fact that we DO need to taper off it instead of just going cold turkey on the immune system.

THAT makes me wonder - if indeed there are virus still hidden out just held in check from the immune system ... long term wouldn't that give 72 weekers who go cold turkey in effect a worse shot at success?  AND if they had us all taper off - wouldn't RAISE our chances greatly?  While our own immune sys was relearning how to work and holding those occult virus at bay that might be there (or not) wouldn't it make SENSE for a doctor to do this?

Now I'm mad and I wish to God I knew how to talk some doctor into doing a study on it.  Aside from dropping a letter as the "professional" that I am to a world wide respected DOCTOR like Jacobson (hahahah can you imagine me writing HIM and saying Well this is what I personally think you should be doing with your hep patients hahahaha yeah RIGHT) I don't know.

I'm pissed. I have to write Kalio and tell her I think Hep Researcher was right on the money with this one. I've NEVER been one to be sick in my whole life and I just can't stand it.

Which reminds me - everyone DON'T FORGET TO GET YOUR FLU SHOT SOON!  THEY ARE STARTING UP HERE IN NY RIGHT NOW.

Deb

[goldyn]

allergies are hitting me harder then ever before , before tx it was just cedar in janurary and now im getting hit with rag weed and fall elm and who knows what else....

[Tallahassee]

I agree with both of you regarding gradual interferon dose reduction.
I questioned my Dr. at the time, but he didn't think that there are any benefits in the tapering of the dose.

I concurred with my Dr. at the time, thinking that there are no glands involved in interferon production and the whole process is so completely different from synthesis of steroids that may be tapering off is not necessary.

But now I think completely differently...

All the best!!

[mremeet]

tallahass: "...concurred with my Dr. at the time, thinking that there are no glands involved in interferon production and the whole process is so completely different from synthesis of steroids that may be tapering off is not necessary."

Actually I agree that the way the body produces and regulates interferon is almost certainly completely different than steroid production (without actually knowing how the body produces interferon offhand). But effectively, the end result may be similar with the exception of things being reversed. If you suddenly chop off prednisone dosage I was warned that the rash I had could explode into a horrendous affair much worse than I already had (the rash was the product of an overzealous immune response). In other words, the immune response would go from suppressed to suddenly full blast like a runaway horse carriage (and could be potentially lethal). So it wouldn't be surprising that for some people after taking two immunostimulants for such a long period of time, and then simply chopping the dosage off to nothing just like that - it might leave their immune systems a bit flat afterwards.

nygirl - Another thing I was thinking about, and again purely speculative, but I almost NEVER got sick from colds and flus when I had HCV. I was known for never getting sick, and even jokingly bragged about my "superior immune system" to those who asked me why I never got sick (without disclosing I had HCV ;-)  But I always believed the reason I almost never got sick was because my immune system was almost always ramped up, always fighting the HCV. I believe this is probably why I very rarely got sick. Even though my immune system was focusing on the hep C, it was almost always stimulated and any foreign pathogen that may have gained access to my body would quickly be confronted with an already vigilant immune system. I even remember once in a blue moon feeling a bit down for a day or two, like a cold was coming on...but then I would start feeling better and it would pass before it ever got any worse. I think those were times when I actually did have a cold, but it never really got off the ground because my already stimulated immune system did away with it in short order. Also, in your case, if you're suddenly getting sick more often than before, I might actually interpret that as a good sign. You would think that if you still had an active HCV infection (i.e. you had relapsed), your immune system would still be at least partially ramped up and would still be fighting the HCV, even if the IFN and riba have been removed from the equation. So in my layman's "guy on the internet" opinion (lol), I'd take the presence of colds and flus etc after completing your treatment a possible sign you've beaten the hep C. Wildly speculative, but I think it might mean your cured! ;-)

[kcmike]

[wyntre9]

Before starting TX i was sick ALL the time, with almost monthly sinus infections, bronchitis, throat infections,....

For the past 43 weeks I've had two ear infections and that's it.

For me, that's amazing.

I dunno if it's the peg or the fact that I'm not around 500 elementary kids per week that's responsible for the repiratory system improvemnt.

It's been the one good thing about TX.  i've only been on antibiotics twice.

Weird, huh?

wyntre

[kcmike]

Opps!  

I tend to agree with the concept of  the immune system "learning to fly solo". I took prednisone post TP for some time and then tapering off, that's logical, I'm with you there.  I asked my doc if we could taper off tx, extending past 48 weeks, since we tapered into the ribavirin at the start of tx.  However, the clinical study protocol was to end with SOC, last shot followed by a week of riba.

Anyway, I'm nearly 3 wks post tx and I've got a bit of a bug.  It came on about 1 wk after EOT.  I had a biopsy and while I was there I asked the doc for some antibiotics.  He said why, your not running a fever, maybe your having an allergic reaction.  I told him that I never had allergies and he said you've never been post tx either.  He wanted to wait a week and see what my wbc & anc do then go from there.  

In a way I'm happy to have a real bug.  It's not nearly as bad as the weekend "interferon trip" and it's my own bodies feelings.  Kinda nice to have them back, at least so far.......

mike

[nygirl7]

I'd take the presence of colds and flus etc after completing your treatment a possible sign you've beaten the hep C. Wildly speculative, but I think it might mean your cured! ;-)


hahahah I take your word for it Meet - that takes most of the fear away, using your logic there since I've finally given in and will have my 8/9 month post tx test on Monday afternoon LOL.  I've been too chicken to go but now...since I am dying of bronchitis again twice in two months that my immune system is right where you think

I never thought of it but I too RARELY got sick before treatment at all either.  REALLY rarely and then it had to be something hard core to really get me (got the flu in '99 is what I remember).  Also I don't remember about you but I STARTED out with a very low viral load of 568,000.

If We go with your line of thinking - that fits in too.  If my immune system was constantly revved to keep my baseline VL so low...then I would not get ill very often because it would be fighting things on a constant basis and thus - low VL.

I think we're onto something.  I wish we could do our own study and publish a paper!  Could you just SEE us in the Journal "HCV and the Taper Down Theory by MrEMeet, NYGirl and Tallahasse" Dr. Ira Jacobson lead investigator. hahahahahahaha.

But seriously - I do think that this makes sense. Especially once I thought of the low VL.

[MrsOckert]

Hey Deb!  How's it going, sweetie?

Anyway, to answer your question about the immune system - YES!  Or at least it sounds like the two of us have no immune system.  I catch anything within the next block and usually am sicker than the original sickee.  

Before TX my hemo was 15.5 and after ending TX (one year ago) I've NEVER been that high again.  Last April my hemo got up to 13.5 on it's own and last week it was 12.  Nope, I'm not on new meds.

Are you having any problems with bleeding episodes?  Last April my platelets were 150 and last week they were 131.  Not low enough to worry about, but too low of a drop all by itself.  The bleeding I'm am experiencing is mainly on my arms.  No scratches, no cuts, no anything.  I will glance at my arm one minute and it's fine.  5 minutes later I glance down and realize that blood is running down my arm.  It's always a small circular hole and will clear up in 2 - 3 days.

It's happened about 10 - 12 times in the last two months.  I'm seeing my primary again in two weeks for more bloodwork, etc.  My liver dr said it wasn't related to my liver and wouldn't even see me.

Anyway, that's my life.  How are you?