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  • Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

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    Old 10-25-2005, 04:57 PM   #1
    ProudUSAFMom
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    Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    I've just returned from my E/N/T Spec after my 2nd visit to get rid of this growth in my left nostril. My GP said it appeared to be a polyp 2 wks ago; I had a polyp in that same nostril-same place in 96 & had it removed before I could have neck surgery. I don't recall much of what I was told at that time by my now-retired E/N/T except the biopsy was benign but this type of polyp could become malignant; if it ever came back, have it removed as quickly as possible.

    This "thing" has been in my nose for approx 2mos now... I had been seeing my high-risk allergist weekly trying to fight chronic allergy infections while I was seen by my GP for treatment of thrush that developed in my esophagus due to the steroid nasal sprays coupled with the Advair (used daily to avoid asthma attacks) & Albuterol (rescue inhaler began 2mos ago due to "exercise-induced" asthma; by "exercise" I mean just walking across a parking lot to go to 1 of my MANY monthly/wkly dr appts). Allergist gave me a shot 10/1 & told me if the thing in my nose did not go away in the next couple of days, I needed to go to an E/N/T Spec. It was Thurs when I realized I needed to be seen but could not get in to see the E/N/T until 10/11 so I went to see my GP 10/7. He said it was definitely a polyp & gave me a perscription for something (I've been through so much in the past couple of wks that I cannot remember what it was), & told me to go see the E/N/T Spec ASAP.

    E/N/T Spec worked me in on 10/11. The dr deadened by nose & put a camera up each nostril, took photos of the GROSSEST stuff I've EVER SEEN in my life! There were these spider-web-like things growing from 1 side of my left nostril connecting to the side across from it; there was this very large yellow mass in my right nostril that had pusy stuff oozing from it in 3-4 places w/out any visible signs of opening/tear. He put me on Levaquin & perscribed an ointment-Mupirocin 2%-take Levaquin daily until Monday when would have results of biopsy of culture taken from rt nostril, discontinue steriod nasal sprays (NasaCort-2 squirts each 2x daily-and Asteline-could use 2x daily as needed, 2 squirts each), flush both of my nostrils w/saline solution until I could feel it running down the back of my throat, spit it out thru my mouth, apply ointment into both nostrils 3x daily.

    Mon 10/17 E/N/T changed to Clindamycin 300mg 3x for 7 days, same nasal routine until appt today. SEVERE nose bleed this past Sat nite-10/22-AFTER I fell asleep-woke me up; pinch nose until I got to sink & let go to wash hands, bled so bad onto my chest it looked like I had been stabbed several times-so much blood-pinched nostrils & held head back for 60secs-still bleeding, repeated for 3mins-still bleeding, repeated until it FINALLY stopped after 15mins-saline solution then ointment & cotton up nostril before back to bed. No more nosebleed since.

    E/N/T dr says right nostril is greatly improved; left nostril is still messed up bad. NOW it appears I have a yeast infection at the beginning of this site in my left nostril, for Chrissakes somebody GIMME A BREAK! Thinks it's from Interferon since I discontinued steroid sprays & am not using Advair unless absolutely necessary; used Albuterol twice in past week. MORE MEDICINE-Fluconazole 100mg 2 now then 1x6 days & NEW OINTMENT-Clotrimazole-Bethamethasone 45GM-2x daily. Ordered CAT Scan of nose & sinus cavities (had 1 from GP 45 days ago but this thing did not show up at that time). Said he can't do anything about drainage in throat (even tho taking 180mg Allegra daily and 2 Allavert each evening) until get CAT scan results.

    Now he is suppose to call me when he gets results & we'll go from there... I'm seeing my Hep dr tomorrow and have a long list of questions to ask him. However, if ANYBODY has ANY INFO regarding this subject, PRETTY-PLEASE share with me. I'm getting EXTREMELY sick & tired of all these new weird things popping up & have finally admitted today that my depression is beginning to get out-of-control (gee, wonder why...), had to cancel my appt w/psychotherapist for tomorrow because I won't be back to this side of town by 2:00p after my 12:30p dr appt downtown at Med Center. Had to cancel him LAST WEEK because of severe side effects of shot: aching ALL over, especially ankles (didn't feel it was safe to drive my ankles were so weak), low-grade fever 100.7, diarreah (sp?), VERY WEAK. Have a standing wkly appt on Wed at 2:00p; this is the 2nd 1 I've had to cancel. My ankles, especially left one, are still very weak & HURT when I walk, especially up or down stairs (my computer is upstairs...).

    My husband has begun to snap at me, fussing at me for no good reason then hugging me, says he loves me... won't talk about it w/me, blows me off w/"it's just stress from work". I think it's because of the unbelievable additional medical expenses we've had this month because of my nose. I asked nurse at psychotherapist office to have him call my husband & tell him to come w/me next wk or come in alone cause he HAS GOT TO talk about whatever it is that is REALLY annoying him & lighten up on me; I can't take it right now as bad as I feel all the time physically & now all the uncertainty from this nose problem.

    Any suggestions/advice will be GREATLY appreciated... hanging on by a thread...

     
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    Old 10-26-2005, 08:57 AM   #2
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    All I can tell you is that I was on tx for 2 yrs. It also took me 3 yrs to finally be able to just start doing some things a normal person can do. I have never heard of a nose problem , yet this tx just shut me down. I had all the side effects of a cancer patient when I was on Interferon/combo the 1st yr & Pegintron combo 2nd yr. I felt like an open wound. I had rashes, sinus problem, every old injury came out full force with pain, that still is dibilating pain which made be disabled. I'm an artist & barely can use my hands. I wear hand supports all the time now & back then had to wear ankle supports(which I still do as well) & elbow supports, back supports. I too had a hard time driving I was so weak & if I had to stop at a stop light I had to put my car in park. Always nausious, always achy, yet the pain was unbearable & still is but I have learned how to pace myself so I can at least do some things now, but would never be reliable enough to hold down a job. I had to have oral surgery, teeth pulled, most of my hair fell out, I was anemic the entire time I was on tx, I had cracks in the corners of my mouth, soars in my mouth, diahrea<sp? , still do have IBS, I was so sick all the time with a chronic sinus infection, the list goes on. This tx kills the bad cells but also kills the good cells, so you are prone to anything, everybody is different as to how they feel and their side effects. I remember feeling like bugs were crawling around inside of me, I was always thirsty & had to drink tons of water, also couldn't eat, but made myself eat mashed potatoes and bland food, I could hold down cheese also, and whatever I could. I was only barely at stage 1 & dr's lured me into taking this tx when I find out now that I could have managed it naturally. I got my hepc from a blood transfusion.
    My story is too long & I've told it many times on this board, but with the symptoms you are having, I think a lot of us have experienced a lot of dibilitating side effects & our bodies are rejecting this poisen treatment. Some people get through it and are 100% after tx. My case was not that. The tx nearly killed me & I am still suffering 3 yrs later after tx was done. NO can understand what you are going through(talking about friends & also drs.) unless they have been through it themselves. That is why it's so good to talk to people on the internet that have actually gone through the nightmare of this tx. I'm sorry if I am not giving you much help, but believe me, this tx is so horrible for some of us & may continue way beyond after the tx is over. I have so many health problems now due to the tx, but one good thing is that my hepc is killed. The dr. said I am cured of hepc but will still, if tested, come up that I have hepc. I wish you the strength to get through this since you have already started it & I don't know what stage you are in, but if it's barely a stage 1 then I'd suggest going off of the tx. & find out how you can control the hepc naturally. That is your decision. And besides I have never heard of anybody that went on the tx for 2 yrs like I did. Consider yourself on chemo for cancer, because it's worse. The tx is chemo. I hope somebody on this board can tell you more about what is happening with your nose, but I just think it's another side effect probably. Then again it could be something the tx caused since your immune system is way down when you're on treatment.The tx may kill the hepc but it can cause other health problems as it did me.
    I wish you the best,
    Linda

     
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    Old 10-26-2005, 10:00 AM   #3
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    Linda,

    If you haven't been tested for treatment induced osteoporosis, you might want to check that out. A course of Fosomax (or something like it) can be of great benefit if this applies to you.

    Also, a new(ish) drug called EMBREL might help some. I have no personal dog in the fight as it pertains to these drugs. I sort of feel all drugs should be avoided where possible. But the reality is that some drugs do make life more bearable for some people who have had interferon complications from hepC. Embrel may to be one of those drugs.

    For those who are considering treatment, there is also a new drug coming soon that is an ORAL thrombocytopenia drug. Currently those drugs are injection only.

    For you, Linda, keep on top of your biopsies at 3-5 year intervals even though you have been tested as undetectable. Always be vigilant. Interferon actuall revvs up the immune system, not suppresses it, which can bring out conditions that were underlying and may or may not have been a problem anyway at some point.

    thanbey

     
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    Old 10-26-2005, 02:50 PM   #4
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    Just got back from Hep dr apptĖgot car sick on the way homeÖ really feeling BAD today; had diarrhea all afternoon & evening last night, finally got it in control around 11:00p but still could not sleep cause of aching pain & low grade fever. Took non-narcotic Tramadol with 2 Tylenol (as Hep dr has prescribed): did absolutely no good whatsoeverÖ so I took Vicodan around 2:30a, fell asleep sitting up in chair w/my head leaned back some time after 3:00a. My face hurt, every part of my body was acutely aware of anything that was touching my skin, the sheets hurt when I was lying in bed.

    Had to get up at 9:30a to get ready for drive downtown, drank lots & lots & LOTS of water so she wouldnít have to slap my arm to get the vein to pop up but she still had to slap it 3-4 timesÖ Even SHE could tell I was feeling awful; hugged me extra special & long, told me to get my mother to come take care of me but my mom has already told me she wished she could come take care of me but she is in process of a bunch of testing for her own health problems; also has to take care of my stepfather who keeps falling & hurting himself. The Hep dr told me I might have to go off the Interferon shots for a couple of weeks while the E/N/T dr fixes my nose cause my last lab work that was done last week is showing 9 warning signs of different things being too low or too high. My white blood cell count is extremely low as well as my red blood cell count; 2 others-Neutrophils & Neutrophils (Absolute); Three are too high: MCV, MCH & Lymphs. Iíve got a printout from ***** that explains what each of the line items are & what it means if itís high or low so Iím going to have to really study this after I get some rest & hopefully begin feeling better.

    My husband had to go to work but really hated leaving me; his answering service called 5 times last night after 1:00a, 3 on his cell and 2 on our home phone; left a message on home phone so I listened to it but they did not say what it was about. I wasnít going to wake him up cause he came home so tired but when they kept calling, I was afraid maybe there had been another fire on his property so I took his cell phone to him & told him they had called the house 2x, left 1 message but did not say what it was about. He was so exhausted he never returned the call but has spoken w/his office many times this morning & told me AS SOON as he could drop me he had to get straight to work. I could tell he really wished he could stay home & watch after me, Iím really doing THAT bad today, but thatís just the way it is sometimes. I just have to handle this & do the best I can w/what Iíve got. Donít get me wrong: I KNOW God is w/me, He has NEVER left me; I just really feel like I need physical comforting; I can envision myself in my Mom's arms with my face buried in her shoulder and she is rocking me back & forth, rubbing my arms, stroking my hair, telling me everything will be OK.

    My mind is like mush Iím so tired-aching-nauseated-exhaustedÖ will be going to bed after I sfinish this posting on my thread; I forgot to tell that the culture E/N/T dr took on my 1st visit from my right nostril turned out to be staph infectionÖ sound familiar?... but it was much better yesterday. However, my left nostril that has that thing in it now also has yeast forming at the beginning of the scabÖ This is really getting nasty. I was SO disappointed when he told me he couldnít do anything to remove it until I get another CAT ScanÖ I am really READY for him to get it out of there ASAP. Now more delays, more tests, more meds, so tired of it all. I feel like I have a low-grade fever now which could be what is causing my aching. I took Vicodan after leaving dr office but they have BARELY done any good for the aching all over that I am still feeling.

    Iím trying REAL HARD to hang in there but today I feel so beaten & defeated. I've been thru SO MUCH in the last 10 yrs & I just HATE to admit even to myself much less to anybody else that Iím finally getting to the point that Iíve just HAD ITÖ ENOUGH ALREADY. PLEASE have MERCY ON MEÖ I am really beat to death-have no strength left to fight; I prayed as best I could last nite while I was up waiting for my diarrhea to stop & the aching to subside; just praying gave me SOME peace but I wasnít able to finish my prayer cause as I prayed about specific physical problems my mind would wander off into reliving all that I have endured in the past 18 mos-I just couldnít keep control of my mind so I finally just closed my eyes, laid my head back, cleared my mind... mustíve fallen asleep almost instantly because I donít remember anything after that until I woke up in the chair this morning around 6:00a, luckily I wasnít stiff from being in that position so long.

    PLEASE donít let my run-down state discourage any of you. We KNOW this will pass, I just have to endure it the best I can; itís even harder for me now because Iím having to acknowledge to myself that I have finally been defeated & HAVE TO start rebuilding my strength/reserve so I can get thru whatever itís going to take to get my nose fixed. Iím sure I will have to be knocked-out to get this removed; may be hospitalized, WISH I KNEW WHAT TO EXPECTÖ

    Thank you for being here for me. I hope you donít let this message depress you; right now Iím depressed enough for ALL of us. And I just HATE to be so negative, that is just NOT me, but as I said, Iím finally beaten down so badly that I HAVE to start pulling myself back up. But I need rest first. Hopefully I will be able to rest.

    I thank God for this HealthBoard; hopefully I will receive some posting that will address my problems as listed at the beginning of this thread and as stated above. Ė Marla

     
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    Old 10-26-2005, 03:18 PM   #5
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    Dearest Linda,

    I did not mean to ignore your heartfelt response - thank you so much for sharing your situation with me. I REALLY mean it when I say I am truly sorry for all your pain and suffering. There is no way for us to know how we are going to fair when beginning this treatment; and, even though we hope for the best, sometimes things go wrong and we are left with more troubles to deal with; please try not to feel COMPLETELY defeated - you sound like you've got a lot of moxy and have really given this a run for it's money. I know, after what I posted, this is quite a different swing on things for me to be encouraging you not to feel defeated... I'm just having an especially BAD day... but, as always, THIS, too, shall pass.

    I keep hanging on and continuing this treatment because it is killing the virus (went from 20.7 million I.U.s in 8/05 to 50 as of last test in Sept). Also, my liver enzymes are improving tremendously. Given the remarkable results of my treatment, I'm not ready to throw in the towel just yet; I will admit that I am beginning to wonder how I'm going to fare by going off the treatment for a couple of weeks while I get my nose fixed and then starting it up again...

    You really sound like you've been through so much; I've actually read your postings on your thread and really felt sorry for you having to go through so much to be left with such bad problems. I pray that you will begin seeing ANY kind of improvement soon, okay?

    Hang in there, girl... it's not over yet. - Marla

     
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    Old 10-30-2005, 07:16 AM   #6
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    Don't give up all of you. Idid 48 weeks of combo tx alone. My only child was in Iraq. I wanted to give up so many times and I also had all the sides of a cancer patient. The tx is consideres cheomtherapy. I finished tx May 2004 and as of May 2005 I am still negative. I am truly grateful I didn't stop halfway. One thing I was I couldn't see myself starting all over again. I took Zoloft for my depression and hydrocodone with my weekly injections. If I can be of any help let me know through this board.
    judy (Proud Army Mom)
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    Old 11-04-2005, 12:51 PM   #7
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    [QUOTE=thanbey]Linda,


    For those who are considering treatment, there is also a new drug coming soon that is an ORAL thrombocytopenia drug. Currently those drugs are injection only.

    ? What's the name of it ? any idea how far away ?

     
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    Old 11-04-2005, 01:26 PM   #8
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    [QUOTE=DLMD]
    Quote:
    Originally Posted by thanbey
    Linda,


    For those who are considering treatment, there is also a new drug coming soon that is an ORAL thrombocytopenia drug. Currently those drugs are injection only.

    ? What's the name of it ? any idea how far away ?
    It hasn't got a name yet (just a number) and the expected date for an FDA filing is 2006.

    \

    thanbey

     
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    Old 11-04-2005, 05:23 PM   #9
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    Thumbs up Re: Pegasus Side Effects-SOMEBODY HELP ME PLEASE!-REVISED: EXCELLENT NEWS!

    I just got my lab report results and am now officially in REMISSION!!!

    My I.U. is <10, my AST is 42 (only 2 above 0-40 range) and my ALT is 35. I cannot tell you enough just how relieved and excited I am to see such wonderful results so quickly. I had just began this 2nd round of treatment with just the Pegasus beginning of August; my Hep dr did not want me to bother with treatment unless I could take both Pegasus and CoPegasys, telling me that if I didn't take the CoPegasys (which I am severely allergic to) I would have less than a 10% chance of remission. My emphasis at the time was to improve my quality of life, even if it was only by 10%, I was having such a tough time with the symptoms of the virus and had been on disability LOA from work since Dec 6, 04. I AM SO HAPPY! And even though I am still dealing with the side effects of the injections, knowing I'm getting such positive results so quickly makes it so much easier to tolerate the negative side effects. I just couldn't wait to share the news. Granted, I've beaten the odds and have baffled the statistics, but still I am living, breathing, proof that you CAN reach remission with only the Pegasus. I truly believe it is Devine intervention as I have literally hundreds of people praying for me.

    Before I began treatment last year, I sent out an e-mail to my family and friends and titled it "Sent me an Angel", explaining everything I had learned up to that point and squashing the rumors that were going around at my office that I was suffering from cancer or AIDS because of my rapid weight loss (I had lost 50 lbs in the first 5-6 months after diagnosis). I ended the e-mail asking for prayers from all believers (which was probably everyone on the distribution list).

    Oddly enough, later that day I was talking to a vendor on the phone who had been trying to set up an appointment to see me but I was putting her off again because I not only felt like roadkill, I also LOOKED like roadkill on that particular day. She asked me to hold while she got her planner to see when we could reschedule for the following week and got back on the phone and said "You're not going to believe this... my assistant asked me if I was talking to someone from Alliance (my work) because she had just received a prayer request for someone named Marla Guidry who has Hepatitis C and was going to begin treatment soon." She and I both were stunned; before all was said and done, I soon realized that my e-mail prayer request was not only forwarded to my friend's friends, but even their friends forwarded it to other people. Even as I write this I am still humbled to realize how many unknown Christians have been praying for me who have never met me and probably never will. Truly this was the biggest blessing I've ever received in my life, next to the birth of my 3 children which, incidently, is probably how I got this virus because I hemorraghed after each birth and had to have blood transfusions back in the late 70's-early 80's before donated blood was tested for AIDS and Hepatitis. I lived a very clean life, only had 2 piercings, one in each ear, and never had a tatoo or even experimented with intraveneous drugs. Praise God that I did not pass this virus to any of my 3 children.

    At first I really felt cheated when I found out I had it; I have had more blood drawn for testing over the years than most people, mostly due to the staph infection I got from the donor site on my hip for bone that was used to fuse 3 levels of vertebrae in my neck back in 96. After ALL the lab work that was done, AND the knowledge of all the medical professionals who treated me over the years knowing that I had blood transfusions back in the 70-80's, I simply could not believe it took this long for me to find out I had contracted Hep C from one of the 3 transfusions. There simply was no other way I could've gotten it unless it was during my surgery for the fusion of my neck vertebrae.

    Regardless, I am now seeing extremely uplifting, positive results and it makes the side effects easier to take just knowing it is doing so much good.

    I hope and pray there are other success stories out there like mine.

    God Bless,
    Marla aka Proud US Air Force Mom

     
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    Old 11-06-2005, 08:20 PM   #10
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    Great for you, Marla. You've certainly paid your dues. It is gratifying to think that it was not for nothing. I didn't pray for you (I guess I was one of the eleven people who didn't get the email), but I'll send you my best, most hearfelt good feelings right now, as I write this.
    Thanks for letting us know your good news.

    sean

     
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    Old 11-07-2005, 07:05 AM   #11
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    [QUOTE=thanbey]
    Quote:
    Originally Posted by DLMD

    It hasn't got a name yet (just a number) and the expected date for an FDA filing is 2006.

    \

    thanbey
    ? Would that be VX-950 ?
    Will it be used alone ? or in combination with Peg or both ?

     
    Old 11-07-2005, 08:16 AM   #12
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    [QUOTE=DLMD]
    Quote:
    Originally Posted by thanbey

    ? Would that be VX-950 ?
    Will it be used alone ? or in combination with Peg or both ?

    I am talking about a treatment for thrombocytopenia, the anemia drugs used with the current therapies to counter their effects. Those drugs are currently an injectable, like the interferon itself.

    The drug you mention is a protease inhibitor, if I am not mistaken and would be an additional primary therapy.

    thanbey

    Last edited by thanbey; 11-07-2005 at 08:18 AM.

     
    Old 11-30-2005, 09:26 AM   #13
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    Re: Interferon (Pegasus) Side Effects - SOMEBODY HELP ME PLEASE!

    My husband is on tx right now and had some weird hard thing in his nose for like 2 months. It finally went away but I wonder if it was the same thing and caused from the tx.

     
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