Infections while on tx

[carolhab]

Hi everyone - I would like to get people's experiences with getting infections while on tx. Seems like I got a UTI 4 weeks in, now an infected cyst, which is not clearing up after almost a weeks antibiotics(Leavaquin).  Since I have never had these before, I am assuming they are a result of the treatment, although I can't prove it... Anybody have suggestions or remedies on preventing/treating these.  Also, I know my Neutrophils are low, almost to the point of dose-reducing....
thanks
Sammy

[hepcgetlost]

Hi there,
It's great that you wrote about your concerns. I hope you can figure out what's happening quickly and take care of it. Are you getting enough rest? Drinking enough water? Making sure you don't have to deal with any unnecessary stress? All these things can really lower your already compromised immune system, and from personal experience, I would recommend that you take this very seriously.

Don't let what happened to me happen to you. I went through a long period of harboring infections of unknown origin. I had sores, rashes and insect bites that became infected from scratching and simply wouldn't heal for months...a few turned into ugly boils and I think I'll have the scars to remind me forever. I also had a cough and a number of other respiratory problems that didn't allow me to talk for many weeks. and a low-grade fever 99-101 for weeks. At the time, I was traveling a lot and exposed to way too many germs on planes and in airports, but I didn't take that seriously enough. So on my last trip (in October), I ended up 2,200 miles from home, hospitalized for 2 weeks, with fevers raging at 103+ every single night. I was taken off tx for 2 weeks, given a few shots of neupogen and procrit and forced to modify my schedule so that I could rest more.  Needless to say, that was my last plane trip until treatment is over next May.

My counts are better now, I rest a lot, drink plenty of water, eat healthfully and mostly I'm fine...The worst of the ordeal lasted about 4 months. It was very hard to give in to the demands of treatment, but the experience was very sobering, and now I do everything I can to accommodate my fluctuating energy levels. I used to keep going going going, long after my body was begging me to stop and rest. I'm in week 56 of 72, and this happened from week 34 through week 50.

I feel what I went through was largely my fault, because I insisted on carrying on my life the way I did before treatment . I'd always had a very high energy level and tended to burn the candle at both ends. What a disaster.

So Sammy, I hope you can benefit from my experience without having to go through anything like that ever. Check everything out with your doctor(s) and respect your body's need for extra healing and rest while on these powerful chemicals. Also, wash your hands a lot and try not to be in places with lots of people where germs abound, especially now with winter and flu and colds everywhere.

Hope this helps...
Judi

[indyjo]

Dumb question, but you know what they say....no question is a dumb........Anyway, I recently had a discussion about sides with my GI nurse and she said that I shouldn't blame everything on sides of the meds because my immune system is shot, and I'm likely to pick up every bug floating around out there. This has seemed to be the case as I have been sick every week with something. My question is if the interferon is to boost our immune system to assist in killing the virus, then how can the  immune system be considered compromised?

[indyjo]

Here is another dumb question. If my viral load dropped from 3.000.000 to 120.000 by week 8, how likely am I to achieve that second log drop by week 12? I just did the blood work for 12 and am impatiently waiting as I will be taken off of treatment if I don't show the drop. Shouldn't I have cleared by week 8?

[lackalustre]

thats a good question.  the interferon that boosts our immune system to kill the virus  also runs us down.   i just know that infections can take about 4 times as long to clear up while on interferon.  myself, i had terrible flare up of hemmoroids (hemorrhoids) during the last 2 months of treatment.  they would not heal and the pain was awful.   i have had flares in the past but nothing like that.  they always clear up pretty fast.  i havent heard it discussed here much as its kind of personal  but i am willing to share that.

[carolhab]

thanks everyone - great feedback - what I heard, and I can't remember where, is that our immune system is revved up to kill the Hepc virus, but in doing that, it's ability to fight off bacterial infections is compromised...hence lots of infections.. sure sounds like lots of us have problems with infections during tx.

[BigBrain]

One of my docs told me that our lower blood counts are likely responsible for more opportunistic infections.  I currently have a lesion in my mouth that refuses to heal and it's extremely painful.  In the past, these lesions generally clear up in about 10 days.  I've had this one for over three weeks.

[DRAGON SLAYER]

DEAR JUDI....

SHALOM from ISRAEL,

Good to hear from you again & to see you back on this forum.
I'm glad your health is improving & I hope that all your misfortunes will be history ASAP.
Pls stay with us....& regards to your family.
Good luck to all,

Ben

[TnHepGuy_]

I'm sorry you are having such tough sx's.

I have had some skin eruptions and infections during the course of my tx. I ended up going to the doctor and being put on a course of antibiotics. The response time was slow, but eventually things did respond positvely. I found that in my case, many of these were associated with hair folicles. My wife suggested that I get a luffa and do some serious srubbing over the areas that would most likely have problems. And for the rest of my tx, this seemed to help greatly.

As far as your low neutrophils go, assuming they are in the 750 or below range, your doctor should have you on Neupogen <b>before</b> considering cutting your dosage. Your ultimate goal of being on tx is to reach SVR. And dosage reductions (most especially early on) are murder on those chances. You and your doctor need to be proactive and get you on Neupogen prior to your neutrophils dropping too low and then he/she wanting to initiate a dose cut. Also, you need to call your pharmacy and find out how long it will take for them to  get it for you. Neupogen isn't an off-the-shelf item. And call your insurance company, to verify that they will cover the cost of it. As much of all of this as you can take care of ahead of time, will keep you on track during the course of your tx - and give you the best chance of reaching your goal.


May God's blessings and mercy be upon you.


TnHepGuy

[TnHepGuy_]

Here are some studies/articles on neutropenia (i.e. - low netrophils) during the course of tx:

<a href="http://www.hivandhepatitis.com/2003icr/DDW2003/docs/052803g.html">Neutropenia Associated with HCV Therapy May Not Be Associated with Serious Adverse Events</a>

<a href="http://www.natap.org/2003/hepUpdate/day5.htm">Threshold for neutropenia in the adjustment of interferon treatment in HCV infection</a>

<a href="http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1_Hepatits_C/Neutropenia.pdf">Neutropenia during combination therapy of interferon alfa and ribavirin for chronic
hepatitis C</a>

(the last article is in Adobe pdf. format. If you don't have Adobe or don't care to read trough the entire article, here is the summary:

"<i>In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could
receive interferon-based therapy for hepatitis C. Because this was a descriptive study of limited sample size, it did not allow for identification of a specific cutoff value for neutrophils that can be considered safe. However, in the absence of other risk factors for bacterial infection, neutrophil counts of as low as 500 cells/µL are likely to be safely tolerated during interferon therapy. These criteria need to be validated in larger, prospective clinical trials.</i>")


TnHepGuy

[TnHepGuy_]

One of the sx's of interferon can be to depress white counts (including neutrophils). Since infection fighting occurs via our white blood cells, anything that would decrease that count would therefore 'compromise' it - to one degree or another.

As far as viral decrease goes, there are considered two different degrees (or slopes) of decline during the first 12 weeks of tx. The first amount of viral decline is the steepest and occurs early on - within the first 2-4 weeks. The next decline is more gradual. This is often the theory behind 'hit-it-hard-and-hit-it-early'. It could also be why cutting dosage can be so detrimental in the first 12 weeks.

I sorry to say that I don't have any data showing chances of a week #12 2-log drop based upon week #8 numbers. You're not too far from your goal of 2-logs, though. In fact, if you are anywhere in the general neighborhood of 30,000, your doctor most certainly should continue your tx, being sure to monitor your PCR every few weeks or so to check your progress.


Best to you as you continue forward.


TnHepGuy

[carolhab]

wow - great info.. the bad news is that I am in a trial where they are not allowed to give me Neupogen, therefore thier only option is to dose reduce. Since it is so early, I am really concerned about what dose-reducing will do.  I just got more tests done, I will know results next week. Based on those results, they will decide to dose-reduce (major bummer if they do). I have already starting to ask them why not the Neopogen, if the trial drug being studied is related to the Riba, not the Interferon, but, to no avail. When I went into this trial (only way I could afford treatment), I was not knowledgable enough about these details, and the 'down' side of these studies.. If I could afford it, I could drop out of the study, and continue in private practice with a doc who would prescribe Neopogen. But, I can't do that right now...
So, to people thinking of or starting trials, beware the restrictions and limitations of them, and the possible impact they will have to your treatment......
Thanks for listening everybody,  
sammy

[Califia]

SAMMY, I posted this info to you earlier in yr last thread, but I'm not sure you saw it.  You know, you can be seen at Quan Yin Clinic  (Misha Cohen's low-income community clinic in SF) on a sliding-scale basis.   There is no reason for you to have to suffer your WBC's tanking when there are simple & affordable solutions at hand--for THIS particular problem, that is.   ( I am speaking from current personal experience,  by the way.)    Anyway, see what they can do for you.

LACKALUSTRE, thanks for your boldness.  Yes, unfortunately I know exactly what you're talking about.  It seems that mucous membranes everywhere are drying out and delicate tissue is tearing in  a multitude of places.   I am trying everything, but it is what it is:  extremely damn painful.   Ain't we got fun?

[TnHepGuy_]

I'm glad to hear that you are able to receive tx, but sorry to hear that Neupogen has been excluded.

You should print out and go over with doc the papers I linked to above. They show that it is considered safe to continue tx at a neutrophil level of 500. (In fact, the first one uses data from a very large (4,243) pool of patients). If your neutrophil counts were able to stay at or above that level for the remainder of your tx, these studies suggest that you will not be at an increased risk of serious infection.

You can also look into what 'califia' has suggested, though that would in all probability entail having to leave the trial you are currently enrolled in.

If you had to lower dosage, even though your SVR odds will decrease, there are patients out there who have still gone on to achieve SVR - so there's no reason to give up hope there. Also, I don't know the status of any liver damage you might have, but continuing on the interferon (even at a lowered amount) can be beneficial in-and-of-itself, since there is always the possibility of halting or even reversing progression.


TnHepGuy

[hepcgetlost]

Hi Ben,
Always good to hear from you, and thanks for the good wishes. How are you feeling now that you've been done for a while? I think of you often, and promise that when this treatment is over, you will see me and Eric in Israel. Can't wait!  Best to you and your family too. Judi

[DRAGON SLAYER]

Thank you for your well wishes. I'm looking forward to meeting you & your family soon. We should have a lot to celebrate when you guys arrive. We're all fine at this point & I remained clear of this dragon 6 months post-Tx & I know that you'll do it as well.
Stay well & best wishes, always
Ben

[carolhab]

Thanks TnHepGuy - I will certainly bring those reports to the Doc - and lobby for staying full dose as long as I can.  I feel like we have to be our own educated advocates during treatment, and there is so much to learn.  I am so thankful I found this forum and really appreciate your info.

Judi and everyone else - thanks for your responses, what a great support group you all are..

with peace and love
Carol