Yes, I started bleeding one night after the fire. John was at the apt. Me at the house alone. I bled all night, came online here and talked to Jim and others about it. We all sort of thought, ah, it's nothing. Called John about 7am to tell him about it. He came right over and took me to the ER. Never in my life did I think it was as awful as it turned out to be. They put me in the hospital, I bled for several more days, got septic, pnenounia (sp) and my blood counts went down below what is ever reasonable for anyone. Ended up there for almost a month, so sick. I quit smoking though! and started again, dang it! I had to stop TX after calling my Gish guy. I had 8 Dr's looking for everything in the world. But yep, I am on a blood thinner for life now and Lyrica for the fibromyalgia that IMO got from tx. I made all these Dr's keep me on tx, but when the Gish group said GET OFF, I did. Relapse. I know you know all about that. Hope I can tx again one day. Apparently interferon causes GI bleeds, rarely, but I got one. Anyway. I am sure you have stories too with all the tx's you have been through. Hope we both get SVR someday and have a great new year. This one has been a doozy!
I'm so sorry that you have pneumonia! I've had it only once in my life and it was the walking pneumonia kind. It was actually years before I ever knew about the Hep C, when I had the pneumonia. I was only 24 at the time. Take care, get well and may the New Year treat you kindly.
Susan
You had a GI bleed?? What were your symptoms leading up to it? Do you know what caused it, or was it just having the hep and the liver disease? I hope that I never had to experience a bleed, I'm a big baby I guess, but that scares me. I hope you're doing okay now?
Susan
Sorry to hear you are in the hospital and have pneumonia. I got it in the hospital along with having a GI bleed that really lowered my blood counts. I insisted on continuing tx and did. I called my rock star hepatologist ( the GI that was txing me was not good at hep c) That was about week 3 in the hospital, I was at 47 weeks, but planned on going 72 as I wasn't clear at week 12. The hep Dr. said to stop interferon due to the bleed, so I did. Eight dr's and I told them after calling the Gish group. Anyway, you have a good chance. You were clear before week 12 and it's not that many shots to go. I doubt they will want to restart you, but sounds like you have had enough of tx! Your body is telling you it's time. 48 is a number, albeit the SOC #, but others have stopped a bit early and SVR'ed.
What type of trial are you in? Roche? S-P? Are you taking a study drug, or are you in a control group (just interferon and riba)?
The reason I'm asking, is that I read somewhere that the latest Roche study drug, which is so new it just has a number, not a name, (it's not Vertex) causes Neutropenia (low WBC and ANC) in most people who take it. And that makes it easy to catch opportunistic infections, such as pneumonia.
I hope your'e feeling better today.
MYS
alagirl wrote: Did you do any testing before week 8? Just curious to know if you may have been UND prior to 8 weeks.
I am part of a clinical trial in which they blinded viral load results until wk 12. After week 12 they then released the results of the previous weekly/bi-weekly PCR testing which showed I was UND at week 8.
So no, I was not UND until week 8
Thanks
The doctors/hospitals take you off the hep C meds if your immune system is too low, as measured by your White Blood Cells and Absolute Neutrophil Count (WBC & ANC) to fight an infection you picked up. Sometimes they take you off interferon if the WBC & ANC #s are too low and you don't have an infection, or they reduce your dose of interferon. One of the side effects of the interferon is to depress the immune system.
I was on Neupogen to boost my immune system from about week 4 of treatment till the end, that may have been 1 reason why I didn't end up in the hospital. Since I didn't get dehydrated or anything from the pneumonia, I guess there was no reason to send me to the hospital.
All - Out of curiosity, why do they take you off of your meds in the hospital? Or does it just depend why you're in there? Is it because the interferon cuts down on your body's ability to fight bacteria?
I'm just wondering because the past two times I've been hospitalized, one of which was for a blood transfusion and stomach/intestinal infection/issues, and then this last time for just a transfusion, they gave me my ribovirin. The hospital, although pretty big, didn't have the type of interferon I'm on in their formulary or whatever, and I was in there on Fridays both times so they had my son bring my interferon shot from home and let me give it to myself.
The first time I was in for the blood transfusion at our local hospital, they didn't give me any of my meds, but that's just because they didn't check me into the hospital, they just transfused me in the E.R. and let me go home.
CBA52 - In your case, you were almost through with the treatment anyway, and in fact, through more of the treatment than some people do for their entire stint as there are those on 24 week programs. Did you do any testing before week 8? Just curious to know if you may have been UND prior to 8 weeks.
Cba51,
Sorry to hear you’re in the hospital over the holidays, hopefully they are pumping you full of antibiotics so to get well soon. Everyone is different including me and I have had 3 bouts with severer bronchitis since being on treatment and the first two knocked my legs out from underneath me and the last one I was able to get in front of it before going full blown thanks to the doctor for giving me 4 refills of a very strong antibiotic after the second round and x rays. I continued treatment and suffered but just caulked it up as more sx. Hopefully you’ll bounce back in a short amount of time and be able to continue TX but if not, jims words can be some what comforting in your chances of becoming SRV after time served.
jasper
i had pneumonia about week 29 but crippled through. almost went off though.
deb
I'm sorry to read you have pneumonia and sorry your treatment was suspended. I came down with it last year while on treatment, in week 16 out of 24, but I never ended up in the hospital and was able to continue and finish treatment. It took 2 rounds of antibiotics to knock it, and an ear infection that developed at the same time, out.
Looking back now, I was a very bad patient - I was very concerned about being pulled off treatment, so I didn't go for the chest x-ray the day my PCP diagnosed the pneumonia, just by listening to my chest (rationalizing that by the fact that the X-ray office waiting room was packed, and I didn't want to wait there and possibly pick up other germs) and didn't have the x-ray until I had been on antibiotics for a week and by then it was improving. So, I suppose I took quite a chance with my health, no doubt due to the fact that I wasn't on anti-depressants while on treatment and by week 16 I was totally nuts and manic (the flip side of depressed).
As others have said, you do have that 8 week UD on your side. Hopefully 42 weeks will do the job for you.
Feel better,
Madame Yu See
P.S. - I did go on to SVR, but I was a type 2.
Good luck with beating the pneumonia, Al.
You did complete 7/8th's of the treatment and with your 8 week UND status it seems you would have a good chance at SVR.
Feel better,
wyntre
Sorry to hear that you are in the hospital. There have been others that have had to stop tx a little early and did go on to SVR, so we will keep our fingers crossed for you.
Feel better. Wish you the best!
Sorry about the pneumonia. I don't know anything about your stats or treatment history, but I imagine if they had planned 48 weeks, then they will just stop at 42, unless either your pneumonia gets better soon and you miss no more than one injection. I don't have a crystal ball, but given you were UND at week 8, my guess is that by now you're either cured or not, and the additional six weeks will not make a significant difference. Feel better soon.
-- Jim