Aa
EXCESSIVE GUM BLEEDING
Geno: 3
Cleared: @ between 8 and 12week.
Currently: On 15th week of treatment. (total 24)
My gums are bleeding alot and i feel like my teeth are loosened. I cannot tooth brush at all. When i get up in the morning my mouth is full of blood. So far i havent taken anything for this problem. Please help!
Hi! I posted part of your post at the top, so possibly you could get some comments other than mine. I have 6 grandkids and love seeing them.
Since you have low WBC and RBC and low platelets to begin with, I would be careful with these trials. Luckily mine have leveled out at about week 20, so I no longer need the helper drugs, except the drawer full of other stuff. LOL
Are you female or male and how old are you?
Since you have low WBC and RBC and low platelets to begin with, I would be careful with these trials. Luckily mine have leveled out at about week 20, so I no longer need the helper drugs, except the drawer full of other stuff. LOL
Are you female or male and how old are you?
Hi again Linda - I wanted to let you know before you may have intro'd me that I quickly did a note under fibrosure topic! Thanks again!
Hi again Linda. That's super that you're on week 30. And you are thinking about doing the 72 weeks? The 72 weeks,from all I've read lately, is being recommended more and more,I think. I hope you won't have to but can surely understand why you might chose to. I'm glad you have access to the helpers. It worries me, too (about the trials and no helpers). I don't think I'd make it (I think I'd be pulled.) I really want to make the best go of my first go round, but then again, I wonder if having Peg/Rib for a short while is better than nothing.
I have met only one person on VX-950. I don't really know how they are doing, but last I heard they were having a rough time (but hanging on.) When I was reading here yesterday I thought I saw several here who looked like they were on the VX. I've been extremely interested in it since last year and had waited almost a year to get any news on being able to participate. It wasn't a total surprise that the waiver didn't work, but it was a disappointment. It was like "OK, now what?" (the news had to settle in.) When I learned a few months ago (after the trial had begun) that helper meds were not allowed, I truly felt better about not having gotten in - lol. The one person I know who did get in (in an effort to help me feel less disappointed) said "try to think of it as divine intervention." They are hanging in there but it's not easy. Hopefully we'll all hear good news again when Vertex releases more data (which I've heard will be soon ?? next month maybe ??). Hopefully it will be so good and SO promising that the FDA will keep doing whatever they do to speed this drug to market. I've heard some say possibly 2009, others say 2010, some say possibly 2008, and of course there is possibly "never" (but we won't say that 4 letter word - lol.) There are still a lot of unknowns, but it's for certain VX-950 has made a lot of noise so far. At any rate, I am wishing you the very best on your treatment with the Peg/Rib; I hope it won't be 72 weeks for you but think you'll do just fine if it is! I look forward to talking to you some more.
This morning, I have to go to nearby city and then come back and watch my granddaughter this afternoon (1 1/2 years old :). It's almost 8 a.m. here, and I'm out of time for now, but I would surely welcome whatever intro you might want to make if you have time and truly appreciate that offer! Nice meeting you. Have a great day. See you soon.
J on east coast :)
I have met only one person on VX-950. I don't really know how they are doing, but last I heard they were having a rough time (but hanging on.) When I was reading here yesterday I thought I saw several here who looked like they were on the VX. I've been extremely interested in it since last year and had waited almost a year to get any news on being able to participate. It wasn't a total surprise that the waiver didn't work, but it was a disappointment. It was like "OK, now what?" (the news had to settle in.) When I learned a few months ago (after the trial had begun) that helper meds were not allowed, I truly felt better about not having gotten in - lol. The one person I know who did get in (in an effort to help me feel less disappointed) said "try to think of it as divine intervention." They are hanging in there but it's not easy. Hopefully we'll all hear good news again when Vertex releases more data (which I've heard will be soon ?? next month maybe ??). Hopefully it will be so good and SO promising that the FDA will keep doing whatever they do to speed this drug to market. I've heard some say possibly 2009, others say 2010, some say possibly 2008, and of course there is possibly "never" (but we won't say that 4 letter word - lol.) There are still a lot of unknowns, but it's for certain VX-950 has made a lot of noise so far. At any rate, I am wishing you the very best on your treatment with the Peg/Rib; I hope it won't be 72 weeks for you but think you'll do just fine if it is! I look forward to talking to you some more.
This morning, I have to go to nearby city and then come back and watch my granddaughter this afternoon (1 1/2 years old :). It's almost 8 a.m. here, and I'm out of time for now, but I would surely welcome whatever intro you might want to make if you have time and truly appreciate that offer! Nice meeting you. Have a great day. See you soon.
J on east coast :)
This forum is a great place. It sounds like you aren't on tx yet. I don't know what the trial you are talking about is. Of course I have heard of Vertex. I am on 30/48 this week and am a 1a also. Never did find out where I got this virus, not that it matters. My VL was fairly high at 4 million. I was und at 12 and 24 weeks, although the tests werent' very sensitive. I am considering a longer tx. One thing that worries me about the trials is the restrictions on rescue drugs for white and red blood counts. Both of mine went down within the first 12 weeks and I would have had to stop, if my hemotologist didn't give me boosters. Now they have leveled off. There are several people on VX950, 6 that I know of. Some of them have had real problems with this, but so far have made it. We are all waiting for the news and unblinding.
I thought about pasting your post above so others here can say hello and meet you. East Coast, not right? LOL
Linda
I thought about pasting your post above so others here can say hello and meet you. East Coast, not right? LOL
Linda
Hi there sfbaygirl, and thanks for the welcome. I'm glad you saw my note (I bet I read from here today for at least three hours - really enjoyed it!) There's a lot of participation here and information, helpful-looking folks, some good debates, food for thought, some very educated and up-to-date researchers. I look forward to participating some. Quick history on me: geno 1a, have had this virus over three decades, diagnosed early 2003, bx showed G3/S2, viral load only 400,000 (had good chance of responding had I not had to be pulled). When my first GI doc started me, my platelets, rbcs, and wbcs were already down. I went to Duke after that first go-around (wanted the best of docs I could get). We chose a watchful waiting approach for me in Sept 2005 because of my first reaction and because promising newer drugs were worth considering in my case (especially the VX-950) and because my liver was stable (no signs of anything going on that would say "time is running out", gotta try again and try now.) Doc was really hoping he could get me in the treatment naive study with the VX-950 and shot for a waiver of those two prior weeks, but it couldn't be done. He recently told me about another trial -one with a polymerase inhibitor (HCV 796) that is launching soon, and we're going to discuss it more in detail at my next appoint (two weeks). I've been reading all I can on it (especially compared to the VX-950), and so far, there is nothing that looks as promising about HCV 796 as the VX-950, and so I'm undecided, but at the same time, I also think I've decided (i.e. thanks, but no thanks) lol.
I especially feel inclined to decline when there is already a risk of an infection busting loose again (and having to be pulled if it does). I don't think the trial allows boosters; need to ask doc when I go.
Another thing I've considered in my decision to hold off on any treatment right now (and wait for the VX-950) is a recent fibrosure (blood test for fibrosis) showed only Grade 1-2 inflammation and Stage 1 -2 fibrosis. ?? That REALLY blew me out of the water (since my biopsy over three years ago showed grade 3 inflammation and stage 2 fibrosis). I've heard the fibrosure is not as good (as accurate) as the biopsy, but it's still used and is still a decent measure of how one's liver is doing when considering the whole picture. Since all of my labs from A-Z have all been within normal limits these past two years, that (combined with the fibrosure results) indicate that at LEAST things aren't worse. Granted, I feel like poop most of the time (fatigue is awful at times), but I've heard that fatigue doesn't correlate with disease progression and that while some have no fatigue and moderate liver disease, others with mild liver disease can have debilitating fatigue. So I don't think I can (or should) use my fatigue to "gauge" my liver disease.
Again, thanks for the welcome! I hope you're doing well with your health and that things are going good for you on this journey. I'm looking forward to meeting you and others here.
I especially feel inclined to decline when there is already a risk of an infection busting loose again (and having to be pulled if it does). I don't think the trial allows boosters; need to ask doc when I go.
Another thing I've considered in my decision to hold off on any treatment right now (and wait for the VX-950) is a recent fibrosure (blood test for fibrosis) showed only Grade 1-2 inflammation and Stage 1 -2 fibrosis. ?? That REALLY blew me out of the water (since my biopsy over three years ago showed grade 3 inflammation and stage 2 fibrosis). I've heard the fibrosure is not as good (as accurate) as the biopsy, but it's still used and is still a decent measure of how one's liver is doing when considering the whole picture. Since all of my labs from A-Z have all been within normal limits these past two years, that (combined with the fibrosure results) indicate that at LEAST things aren't worse. Granted, I feel like poop most of the time (fatigue is awful at times), but I've heard that fatigue doesn't correlate with disease progression and that while some have no fatigue and moderate liver disease, others with mild liver disease can have debilitating fatigue. So I don't think I can (or should) use my fatigue to "gauge" my liver disease.
Again, thanks for the welcome! I hope you're doing well with your health and that things are going good for you on this journey. I'm looking forward to meeting you and others here.
Welcome to the forum! Please keep on posting. We need all the experiences we can get. Usually people don't read down this far, as there are so many threads, but since I posted before I thought I would check.
You are so right about brushing. My periodontist said it is necessary to brush to strengthen the gums. It works rather quickly. It can be painful, but push on anyway.
Maybe you can post above how you are doing on tx and stats. I would like to hear more about you.
Linda
You are so right about brushing. My periodontist said it is necessary to brush to strengthen the gums. It works rather quickly. It can be painful, but push on anyway.
Maybe you can post above how you are doing on tx and stats. I would like to hear more about you.
Linda
First time posting here. I've enjoyed reading the posts. I came across this note and wanted to add my two cents. I don't know how to get the original poster's name in the box, and so I hope posting to "everyone" will do.
Hep C and treatment (both, independent of the other) can contribute to and aggravate gum disease, which is also called peridontal disease.) Not only can this condition be extremely painful, it can also lead to something more dangerous than just loss of teeth, bleeding gums, inconvenience, or pain (for some.) I was pulled from treatment over three years ago on account of the danger my peridontal disease (which flared up after I was begun on treatment) posed to my heart (BUT -- I have a heart condition called mitral valve prolapse, which is BENIGN and poses no danger UNLESS I have dental infections left untreated). The bleeding began after the first week on Peg/Rib and was awful. I was infected down to the bony structure (my jaw). But it was treated, and ONLY with treatment did the pain and infection stop.
This is not to scare you but simply to let you know that bleeding gums and infection left untreated can turn more serious for some patients (those with heart valve disease, for example, which I do have.) It can also be the reason they pull you from Hep C treatment.
Since you are already on treatment and are having bleeding gums, I strongly suggest you get seen by a dentist as soon as you can. All the blood (old blood) you cannot get out from "pockets" is creating the perfect breeding ground for infection / more bleeding / more infection / deep infection. Treated, though, you will be free of bleeding, free of infection, and free of pain.
Had my first GI doc been aware of the problems bleeding gums and peridontal disease can cause and the preventive measures that could have been taken (and should have been taken) prior to starting me on Hep C treatment, I could have possibly been through with Hep C treatment by now simply by having gotten my gums and teeth treated before beginning Hep C treatment.
I'm now under the care of a hepatologist at Duke. I'm also under the care of a peridontist. My hep doc has said that starting Hep C treatment with bleeding gums is a no-no for any patient. For me, it's a requirement to have NO bleeding gums or any sign of infection and to be cleared by the peridontist prior to beginning Hep C treatment. I have recently been offered the chance to participate in a trial, but I have been told that if my gums start bleeding, I will most likely be pulled from the trial.
Peridex is an antimicrobial agent (mouthwash) and can help but has to be prescribed by a dentist, and they will probably want to see you first before they prescribe it. Viscous Lidocaine is a numbing agent (mouth wash) the dentist can also prescribe, (it numbs your mouth for pain control), and of course antibiotics may need to be considered, too. If you do not get to the dentist, brush your teeth frequently, floss frequently, massage your gums while you sit at computer with soft toothbrush, get a sonicare toothbrush and use it three times a day for 2 minutes upper and 2 minutes lower. Listerine Listerine Listerine - no matter how bad it makes your eyes water :) is good stuff and will also be recommended by your dentist, probably.
If you ever get in the shape I was in, you will so appreciate the saying "an ounce of prevention is worth a pound of cure". Hopefully a dentist will see you now and help you.
Good news (at least with my mouth and gums) is they are fine now. But Hep C treatment for me will probably aggravate this condition if I don't keep my teeth and gums in the best shape possible (and might cause problems even if I do keep them in the best shape possible). Da** Hep C :) !
Best of luck!
Hep C and treatment (both, independent of the other) can contribute to and aggravate gum disease, which is also called peridontal disease.) Not only can this condition be extremely painful, it can also lead to something more dangerous than just loss of teeth, bleeding gums, inconvenience, or pain (for some.) I was pulled from treatment over three years ago on account of the danger my peridontal disease (which flared up after I was begun on treatment) posed to my heart (BUT -- I have a heart condition called mitral valve prolapse, which is BENIGN and poses no danger UNLESS I have dental infections left untreated). The bleeding began after the first week on Peg/Rib and was awful. I was infected down to the bony structure (my jaw). But it was treated, and ONLY with treatment did the pain and infection stop.
This is not to scare you but simply to let you know that bleeding gums and infection left untreated can turn more serious for some patients (those with heart valve disease, for example, which I do have.) It can also be the reason they pull you from Hep C treatment.
Since you are already on treatment and are having bleeding gums, I strongly suggest you get seen by a dentist as soon as you can. All the blood (old blood) you cannot get out from "pockets" is creating the perfect breeding ground for infection / more bleeding / more infection / deep infection. Treated, though, you will be free of bleeding, free of infection, and free of pain.
Had my first GI doc been aware of the problems bleeding gums and peridontal disease can cause and the preventive measures that could have been taken (and should have been taken) prior to starting me on Hep C treatment, I could have possibly been through with Hep C treatment by now simply by having gotten my gums and teeth treated before beginning Hep C treatment.
I'm now under the care of a hepatologist at Duke. I'm also under the care of a peridontist. My hep doc has said that starting Hep C treatment with bleeding gums is a no-no for any patient. For me, it's a requirement to have NO bleeding gums or any sign of infection and to be cleared by the peridontist prior to beginning Hep C treatment. I have recently been offered the chance to participate in a trial, but I have been told that if my gums start bleeding, I will most likely be pulled from the trial.
Peridex is an antimicrobial agent (mouthwash) and can help but has to be prescribed by a dentist, and they will probably want to see you first before they prescribe it. Viscous Lidocaine is a numbing agent (mouth wash) the dentist can also prescribe, (it numbs your mouth for pain control), and of course antibiotics may need to be considered, too. If you do not get to the dentist, brush your teeth frequently, floss frequently, massage your gums while you sit at computer with soft toothbrush, get a sonicare toothbrush and use it three times a day for 2 minutes upper and 2 minutes lower. Listerine Listerine Listerine - no matter how bad it makes your eyes water :) is good stuff and will also be recommended by your dentist, probably.
If you ever get in the shape I was in, you will so appreciate the saying "an ounce of prevention is worth a pound of cure". Hopefully a dentist will see you now and help you.
Good news (at least with my mouth and gums) is they are fine now. But Hep C treatment for me will probably aggravate this condition if I don't keep my teeth and gums in the best shape possible (and might cause problems even if I do keep them in the best shape possible). Da** Hep C :) !
Best of luck!
I am the same..I have only been on treatment for 3 weeks and I have a disgusting bloody taste in my mouth all of the time. I was supposed to go to the dentist last week but chickened out!! Enough pain already!!!
the more you mess with your teath and gums the ferther your gums pull from your teath,,peridex {chlorhexidine gluconate} oral rinse [good stuff] it can stain a bit but that doesant last, easy on hard food
My gums have bled some on tx and my teeth do feel looser sometimes. Brushing really helps with bleeding gums. Maybe do it gently, but it is a good thing to do for gums. Even if you just brush the gums pretty well, you might find that the bleeding stops. It worked for me anyway. Also I use a small brush inbetween the teeth, that helps too! Good luck!
Oh i know. LOL
My dentist says its a treatment side effect. (It is).
My Dr. says "Dont worry, it'll be fine"
and I know that its my low platelet count.
I know about taking Biotene etc for mouth sores but i dont really know if there is anything to help with excesive gum bleeding.
But you know what i mean, sometimes we have to do our own research and share our experiences to get on top of things.
DO NOT WIGGAL YOUR TEATH DONT LET A DENTAST PULL THEM IT TOOK ME 6 MONTHS FOR MY TEATH TO GET SOLID AGAIN thay did get solid !just gargal, brush lightly with a very soft brush,mayby dont kiss with an opan mouth till it heals up it shoud all pass just another scary tx moment you get used to them ?????
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