Body attacking itself because of tx...

[mkeela]

Ok this is what the Dr. said. My body is attacking itself due to the meds. Perscribed prednisone and another 4mg shot of the steroid Dexamethisone Sodium. I got to tell ya I am feeling pretty irritable because of them...maybe a little wired too LOL. The rash has only spread but I am getting "numb" to it and as my kids say, just plain tough to it now...lol.
I am upset as it looks like there is a lump in my breast and the Dr. ordered a ultrasound of both of them. I am scared. I just feel I have been through enough.
Anyways, I hope all is well with everybody, sorry I haven't been posting, but I do read on occasion and pray all the time. It is just usually late at night or wee hours of the morning when I can't sleep due to rash...don't like to post 1/2 sleeping. Love and Prayers to all, Mequila

[mkeela]

I think I posted this in the wrong forum, I am SOOOOO sorry everyone. I give up LOL.

[pln]

Hi, I have been thinking of you, I will pray for your fast recovery. I hope we can post here. I LOVED the old form! take care. Pam

[Myown]

So sorry to hear all you are going through.Ugh!

Prednisone? Don't know for sure, so hopefully someone who DOES know can chime in,,,but i thought that is not something good for us to take,,can lower the immune system? Not sure, but maybe you can look into it. If it was your hep doctor who prescibed it, I guess its okay to take, but if not maybe check with him. Certainly don't want to re-activate any virons,,but I hope I am wrong.
I hope you feel better soon. Praying for you.
Found this when I googled
http://www.medhelp.org/forums/Hepatitis/messages/43954.html

[mremeet]

I was on prednisone and another related IV steroid called solumedrol some time back for a similar rash. Prednisone is an immunosuppressant, and normally someone with an active HCV infection wouldn't want to be taking it. Prednisone suppresses your immune system so that an overreacting immune response due to an allergy etc can be quelled. An overreacting immune response can also be exacerbated or even be outright caused by interferon (interferon being an immunostimulant). Prednisone is also commonly used in those with autoimmune hepatitis. Autoimmune hepatitis usually involves the immune system attacking the liver and possibly causes other problems including skin rashes. AI can and is triggered in some who undergo IFN therapy, especially those that undergo multiple or longer courses of treatment and/or stronger than normal dose regimens. It's onset can be at a low level and be transient/temporary, or it can be more severe and continue unabated long after the interferon is stopped. If the autoimmune hepatitis is bad enough and goes untreated, it can actually destroy an otherwise healthy liver within just a few years in extreme cases. Although, apparently in most cases AI can be effectively controlled with prednisone and a supplement called imuran that allows the dose of prednisone to be brought to very low levels (which are safer, especvially over the long term). Most AI patients require prednisone and/or imuran on a long term basis, sometimes involving periods of remission (where no drugs are required) punctuated with flare ups where drugs are required again. Occasionally the AI can be put into permanent remission after a single course of pred/imuran. Many/most AI patients go on to live full lives, even if they require prednisone/imuran for the rest of their lives.

However, prednisone has been shown to cause viral loads to increase significantly in those with an active HCV infection. Since mkeela has just completed treatment, it's quite possible she is SVR right now. If she is, chances are the prednisone will not cause a relapse or result in a viral flare. If she hasn't lucked out and scored an SVR, then the prednisone could cause the virus to rebound very quickly, and eventually probably reach higher than baseline levels if the pred is continued long term. Although, if there is a relapse, chances are it would have happened anyway, even without the prednisone. There are many long term SVR patients out there that take steroidal remedies (including prednisone), and it hasn't been shown to increase relapse rates in these patients...although there is a very small handful of patients who supposedly relapsed after being given huge amounts of IV steroids after a transplant - but these citations are exceptionally rare.

Bottomline is that you don't want to be taking prednisone if you can help it. But when you need it, you need it. I needed it, took it, and it helped me. I was very worried it may have caused my treatment to fail, because I had to take large amounts of it only 2-3 months into my treatment. But I remained UND the whole time, even with riba dose interruptions and reductions. Mkeela, hopefully the apparent drug reaction you're having is temporary and will subside. You've discontinued the "offending" drugs, so with any luck as they leave your body, your immune system will settle down and get back to normal - especially with the help of the prednisone.

Good luck, hope you're feeling better. I know that rash must be miserable!

[Myown]

Thanks so much for the explanation!

Hopefully Mkeela is Svr and all will work out fine. She has been through alot. she seems to be a strong girl though. I hope she gets better real soon.

thanks again!

[mkeela]

Hi everyone, thanks for the responses. Nice to see you back myown.

REV: I have Hep C. UND. completed 24 wks tx on Jan 11 (last inj.), last riba on Jan. 18. the Dr. just said that because of tx, my body decided to "attack itself" after going off the meds. I became extremely ill (fever, vomiting, rash, blood in urine, etc. etc.)within the last two weeks, (over the illnesses now except the rash) put in IV's, lots of dumb Dr.s tried to give me narcotics, and all kinds of meds that interacted w/ each other lol, but now I am just doing injections of Dexamethisone and taking a small dose of Prednisone (20mg 3x day) till I see him again in 4days.

Steroids are NOT something you want to take w/ Hep!!!! My Dr. DID NOT want to give them to me, because the risks,(yes all that ya'll said is TRUE) but bieng as ill as I have been he didn't see another choice. My he consulted w/ my hepa team and they agreed. SOOOO... here I am.

Mremeet: you have helped me so much through this, along with sweet jim and chmnme, PLN,...and SOOOOOOO many others. The time ya'll took to research what you did for me blew my mind. I don't know if I could have made it through the last few weeks w/out you. This has been harder than some of the stuff I went through while on tx.I love you all, Mequila.

[mkeela]

My hgb is up to 12.8!!!!!!!!!!!!!! And my WBC's look good. Glucose is 160, VL UND,  bili is perfect...BUT...my LFT's are both close to 200. Very disturbing to me, especially bieng UND and off tx. My BP was 130/100 and pulse 125 at the office...WEIRD. Doc said it was because my body is in serious distress. Ok whatever.

[mremeet]

That's a high glucose reading. Do you have problems with hyperglycemia or diabetes? (or "diabeeters" as my southern grandma used to say)

[jmjm530]

Sounds like you're in good hands and hopefully you will start feeling better soon.

All the best,

-- Jim

[jmjm530]

Sounds like you're in good hands and hopefully you will start feeling better soon.

All the best,

-- Jim

[gauf]

Sorry to hear about your post tx problem. I seem to have some problems too. I have a very tender lymph node in my neck that is nor improving at all. Pink eye for close to 5 weeks and 2 wks post tx. Thought I had a tooth abcess (abscess) but dentist said no, I have TMJ from stress grinding of teeth. Causes earache and jaw pain. So, I do wonder if my immune system will ever come back and knock the pinkeye down. I am wondering what your prognosis is for getting your immune system back to normal? You sound pretty positive for getting more bad news.

[mkeela]

Mremeet: My glucose readings just keep climbing since starting tx. I was tested last year (before tx) and it came back high but not enough to be considered "dibeeeters" lol.

Thanks jmjm...coming from you that helps a little w/ the insecurites. ;)

Gauf: been wondering how you have been, I am so sorry to hear about your problems also, I can't imagine having pink eye that long, you poor thing. It is so depressing isn't it. Just when we should be all getting up and on w/ our lives the stuff that saves us almost kills us. Amazing. I sure don't mean to sound like a downer, and I'm sorry if what I just said did...I really know that we will get better. It just may take a little while :) Maybe I shouldn't have prayed for patience a while back!!! I know better than to do that because I know how we get strong in that specific area LOL...exersize for patience is given usually through long lines at the checkout and long stoplights and trains...lol...but evidently can be exersized in other areas too...LOLOL.

[goldyn]

Sounds like your body is going through some heavy stresses, at the end of tx my blood pressure and my glucose went higher too i wonder what it is that causes this, they put me on a diuretic for blood pressure and are watching the glucose now , blood pressure has responded to lasik the diuretic, i sure am praying all of this will resolve and just flush out of your body so it can heal and get back to normal....

                             God Bless You
                                 Goldyn

[FL_Gal]

Hi there!  Glad you're feeling a bit better!

About the lump....I developed one too in the last couple of weeks.  Mine was VERY painful and infected.  I had some antibiotics here, so I took them for 10 days, and the infection went away, but the lump is still there and is still a little painful.

Anyway, the reason I'm telling you all this is because from my symptoms, I think it is either an infected duct or cyst, and yours probably is too, with the whole autoimmune thing going on, so I don't want you to stress out over it.  I'll be sending good thoughts your way!

[mkeela]

Just curious how high your BP and glucose went and how long before they did anything about it...I really think it does have ALOT to do w/ tx. All the generous links I recieved from everybody awhile ago(when I got so sick and was panicking) showed me soooo much of what can happen that I HAD NO CLUE about before. My GP, (that I have only went to twice throughout tx) told me ALL KINDS OF STUFF!!! RRRRRRR, I wish I would have made appointments every week w/ him throughout this!!! My Hepa Docs were HORRIBLE DUMMIES!!!i only saw them like every 6-8weeks and they never told me NOTHING! I had to rely on everyone here to get any help!!! I owe so much to this place. They still wont give me a more sensitive PRC...just the <615. BUT my sweet GP will after a few months I guess so I am SOOOOO happy about that! I also need to ask you how long have you been off tx? Im so sorry I can't remember. I feel so bad for having to ask.

[mkeela]

OOOOOOOOOOOOOOOOOOH THANK YOU!!!! That really puts this fried, tired brain to rest!!! I never thought of that. Could be SOOOOO true!!!!!!!! I will find out after the ultrasound. Thanks for taking the time to say that. I hope to God someday soon I can give out as much support as I have received here. THANK YOU THANK YOU THANK YOU!!

[seabean]

If prednisone is not good for the autoimmune thing, why do they give it to transplant patients?  My brother had a liver transplant March 06 and is still taking it.  He also has HCV and has not been treated.  His dr. HATES IFN and refuses to give it to him, says it's a satanic drug!  Smart man.

[mkeela]

LOL, I have NO idea.... however, if you go up to comment
C5, mremeet pretty much summed it all up. And it is true.

[niceguy2007]

mkeela... try ALOE VERA drinks...drink it every day! its an excellent anti-inflammatory withotu the side effects of the prednisone and related drugs.

aloe vera has been known to cure inflammation problems, including arthritis in some people.  it is also excellent for your skin.    

remember, ingesting is better than skin application! :)

[mkeela]

Thank you niceguy, I will check it out! hope you are doing well! :)

[BThompson4]

I was transplanted Jan. 2001 and did the huge doses of prednisone, starting at 480 mg per day and tapering eventually to 10 mg per day in month two to 5 mg per day in the third and final month on prednisone, which was withdrawn at three months per protocol.  

My pre-transplant viral load was five million.  However, prednisone had probably no negative effect on my viral load post transplant, which was measured every three months:

3 months post-- 60,000 iu/ml
6 months post-- 80,000
9 months post-- 220,000
one year post-- 250,000
15 months post-- 60,000

From a year and a half post-transplant the viral load always measured more than 3.5 million.  This big increase came more than a year and a half after stopping prednisone.

Not saying that prednisone is good for you (it is nasty in many ways), but it appears to have had no effect on my viral load post transplant, taking it for three months for anti-rejection along with cyclosporine and cellcept.

[mkeela]

HELLO!!!!!!!!! How have you been???? Thank you sooo very much for telling me that. I have been a little worried about it, but now hearing that my fears are lessoned. You are so precious to this place, I sure wish you would do more posting. You have so much to offer in wisdom and experience. Thankyou for bieng a part of my journey. Mequila.

[craigie]

Here is a site that explains the perils of IFN and autoimmune problems.
http://janis7hepc.com/autoimmune_problems.htm

[ScndChnce37]

I am sorry that your body is attacking itself!  UGH!!! Sometimes I get scared that the tx is worse!  I felt awful before tx no energy, bloating, etc., and while on tx well...need I say more! LOL!  Somedays, I can LOL!  Anyway, I now have swollen lymph nodes since Nov.!  Had a CAT Scan (neck/chest)good results, Oooooodles of blood work for HIV, Cat Scratch Disease, Mono, Etc., All came back fine!  Feel like a wet noodle, look like a wet noodle, and still have no answers!  Have K. Stones in both kidneys and GOD knows what else!  Oh well, enough of my whining, just wanted to know if anyone else experienced the swollen lymph nodes thing too and what the prognosis is.  Take care everyone and try and hang in there.  I am on wk. 26!  Counting em' down to 48!!!  Wooooo Wooooo !!!!