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follow up from Dr and low neutrophils
Hi all, I wrote last week about having low neutrophils and my Dr. was talking about taking me off my meds. You all gave me some good advise to try to stay on them, which didn't work. He showed me my current blood work my wbc 1.8, abs neut were at .6, everything seemed to be low. I argued with him about letting me stay on thinking that it is normal to have a drop in numbers and that around 6-8 weeks they will stabilize. He said yes thats true but, that my numbers declined more rapidly than most. I asked for neupogen and he said that it was for someone much sicker than me. (I have very mild liver damage) After going back and forth with him he said that I was at risk for infection, phnemonia, kidney infections etc. and that if he was going to be my Dr. I would stop all meds. With that I said ok I guess you know best. Anyways I repeated blood work 7 days later and my counts were up then repeated 2 days after that and my counts are WBC 2.6, ABS Neut 1.1 everything else looked better also. I found out that he takes the number of WBC and the Gran and times it together and thats the number he doesn't want below 1000 which mine now is 1392 after only 9 days. So I got to start back on 1/2 dose of interferon last night and only 3 ribi pills a day and we will repeat blood work on Tuesday. He had said at one point that if my counts went back down that he would pull me off again and not let me restart. I don't know if he will still do that considering how quickly my numbers corrected. I don't think I realized the haze I was in. I felt very SPACY, weak and insocial. continued
I just want to say, you hang in there. I wish you the best, and I will continue to pray for you. Much Love, Cindee
is it extremely severe intestinal cramps(intervals) or a constant pain? have you noticed any blood from either end(can't put it better)? did you get to try acidophilus culture at all? it is very restorative of the flora.
my hiatal hernia does not act out anymore, the bump could be the hernia, has it gotten larger? My stomach problems were not constant during tx so I can't completely relate. I do suffer from bad cramping which I thought was IBS.
You definetely need to call first thing in the morning, unless it becomes worse, then is ER for you. Let us know as soon as you do.
the pharmacy has some extra strength acidophilus culture they keep refrigerated for severe cases. This is all guessing from us. sorry it hasn't eased yet.
my hiatal hernia does not act out anymore, the bump could be the hernia, has it gotten larger? My stomach problems were not constant during tx so I can't completely relate. I do suffer from bad cramping which I thought was IBS.
You definetely need to call first thing in the morning, unless it becomes worse, then is ER for you. Let us know as soon as you do.
the pharmacy has some extra strength acidophilus culture they keep refrigerated for severe cases. This is all guessing from us. sorry it hasn't eased yet.
Have you considered a second opinion?
I also have mild damage at stage 1, but the goal is to keep you on tx and manage the sx. I was given Procrit for anemia in spite ol low damage.
Check beathepc post from yesterday, revenire placed a link that speaks of the management of sx to optimize outcome. GL to you and follow your gut feeling, regardless of dr strong opinions. I am on my third GI.
I also have mild damage at stage 1, but the goal is to keep you on tx and manage the sx. I was given Procrit for anemia in spite ol low damage.
Check beathepc post from yesterday, revenire placed a link that speaks of the management of sx to optimize outcome. GL to you and follow your gut feeling, regardless of dr strong opinions. I am on my third GI.
Michelle...I also had a drop on my WBC and neutrophills but nothing like yours. That is weird that you quit the riba and started back and now the stomach pain and the feeling of being unsociable is back. I'm definitely glad that one day this feeling will be gone when I get off these meds. Yeah...I normally want to be around people and love to talk etc...and the only thing I can chalk it up to is that we just don't feel good on these meds so therefore you have no energy to even to pretend to be having fun! Good Luck to you!
I am going to state an opinion that I hesitate to give; but I feel most strongly that each case is different. You say you have mild inflammation? And you had to push your doc to stay on even a half dose?
Do you trust your doctor? My doctor says to me, if you do not want to listen to what I tell you, why do you come to me?
The goal is NOT to stay on tx at all costs. I am sorry but it is not. The goal is to get well. I am very pro tx under a number of circumstances. Genotype 2 or 3, moderate or worse inflammation, a good Hep doctors strong opinion that it is best to do so. I cannot imagine doctor shopping until you find one who will extend tx or keep you on tx no matter what is happening to you.
This is hard for me to say, I want to be liked here and most of you are on tx - as I was until 4 days ago. But my doc said stop, he is a really good hep C specialist, and knows a lot more than I do about Hep C. I too only have mild to moderate inflammation. The tx was taking from me more than it was likely to give to me. IF that is the case with you, please listen to your doctor. If you do not think he knows what he is talking about, then it is time to get a second opinion.
The goal is to get well, not to endanger your life from the sides of tx.
Do you trust your doctor? My doctor says to me, if you do not want to listen to what I tell you, why do you come to me?
The goal is NOT to stay on tx at all costs. I am sorry but it is not. The goal is to get well. I am very pro tx under a number of circumstances. Genotype 2 or 3, moderate or worse inflammation, a good Hep doctors strong opinion that it is best to do so. I cannot imagine doctor shopping until you find one who will extend tx or keep you on tx no matter what is happening to you.
This is hard for me to say, I want to be liked here and most of you are on tx - as I was until 4 days ago. But my doc said stop, he is a really good hep C specialist, and knows a lot more than I do about Hep C. I too only have mild to moderate inflammation. The tx was taking from me more than it was likely to give to me. IF that is the case with you, please listen to your doctor. If you do not think he knows what he is talking about, then it is time to get a second opinion.
The goal is to get well, not to endanger your life from the sides of tx.
You really said the same thing I did, except my statement was the goal is to stay on tx and manage sx, because if we committed to starting tx, we were committed to finish.
IF the sx are not managed and treated we are not given the full opportunity for a good outcome.
If, after trying to manage and stabilize the sx, there is no improvement, of course is not stay at any cost, that is not clear thinking, unless the person is at deathbed with liver disease. You made the correct choice for you, you tried, your dr tried, your sx did not improve. It was the choice for you. And you are always liked for your respectful approach to everyone here and your strength.
I know you are puzzled that someone might want more of these meds, but the point is: we don't know when the damage happened. Is it now begining and thus progressing or did it happen 20yrs ago and remained the same? No dr could say. At 50+ do I want to chance more progression? No. do i want to re-treat if I relapse(big possibility with geno1, and slow responder).? aagghhh!!
Wouldn't you, if you had manageable sx during the first 48 wks, want to extend if it gave you some benefit for permanent svr rather than repeat 48 more wks? I could wait 3 mo post tx and see if I relapse, but I want to give it my best shot now!
You must shop around for drs if it is the best for you, there are so many incompetent ones, you have to at least get a second opinion, even if you now have a good physician. As a matter of fact, a good physician recommends doing just that.
You get well soon.
IF the sx are not managed and treated we are not given the full opportunity for a good outcome.
If, after trying to manage and stabilize the sx, there is no improvement, of course is not stay at any cost, that is not clear thinking, unless the person is at deathbed with liver disease. You made the correct choice for you, you tried, your dr tried, your sx did not improve. It was the choice for you. And you are always liked for your respectful approach to everyone here and your strength.
I know you are puzzled that someone might want more of these meds, but the point is: we don't know when the damage happened. Is it now begining and thus progressing or did it happen 20yrs ago and remained the same? No dr could say. At 50+ do I want to chance more progression? No. do i want to re-treat if I relapse(big possibility with geno1, and slow responder).? aagghhh!!
Wouldn't you, if you had manageable sx during the first 48 wks, want to extend if it gave you some benefit for permanent svr rather than repeat 48 more wks? I could wait 3 mo post tx and see if I relapse, but I want to give it my best shot now!
You must shop around for drs if it is the best for you, there are so many incompetent ones, you have to at least get a second opinion, even if you now have a good physician. As a matter of fact, a good physician recommends doing just that.
You get well soon.
food for thought from someone who forgot to eat!!! I hope you are feeling better...much better.
How did ring's conference go? She is probably sorting her junk mail and has no time for replies yet.
ive
How did ring's conference go? She is probably sorting her junk mail and has no time for replies yet.
ive
Everyone patient is somewhat different when it comes to the tolerability of sides and adverse events. I agree that some need to stop tx when they and their Dr. decide that it is the best route. Others, like myself, may argue to persist on tx with the Dr's blessing and support, even when the toll is heavy. I wanted to persist and found medical interventions which could help me do that.
Getting a second opinion is very different from 'Dr shopping.' Had I not persisted in pushing for solutions, I would have been taken off HCV Tx and never learned that I had Cryoglobulinemic Vasculitis, not the 'back problem' I had been treated for. I would have been left with this condition exacerbated and untreated. It's no certainty that the cryo would have resolved upon stopping HCV Tx- some do, some don't. If I hadn't pushed my way through 5 specialists, I wouldn't have obtained the remarkable new tx for Cryo from a Hematologist which enabled me to both deal with the cryo effectively and to persist with HCV Tx.
Physicians are different, one from another, like us patients. Some are more aggressive regarding sides and adverse events and work hard to find ways to manage and deal with them with an eye to enable stubborn people like me to persist in tx. Some are more conservative, whether for the patients benefit (good) or to protect their own interests (understandable but not so good). Some are more willing to have other specialists assisting with their patient, others seem to feel threatened.
This is in no way critical of Audrey or anyone else who has chosen to stop tx. Audrey, you are a real Trooper, and I wish you the best. It's just that I learned to push hard and avail myself of every advantage the insurer would allow. In my case that wasn't 'Dr shopping' but agressive case management of my own case.
God Bless us all, Dave
Getting a second opinion is very different from 'Dr shopping.' Had I not persisted in pushing for solutions, I would have been taken off HCV Tx and never learned that I had Cryoglobulinemic Vasculitis, not the 'back problem' I had been treated for. I would have been left with this condition exacerbated and untreated. It's no certainty that the cryo would have resolved upon stopping HCV Tx- some do, some don't. If I hadn't pushed my way through 5 specialists, I wouldn't have obtained the remarkable new tx for Cryo from a Hematologist which enabled me to both deal with the cryo effectively and to persist with HCV Tx.
Physicians are different, one from another, like us patients. Some are more aggressive regarding sides and adverse events and work hard to find ways to manage and deal with them with an eye to enable stubborn people like me to persist in tx. Some are more conservative, whether for the patients benefit (good) or to protect their own interests (understandable but not so good). Some are more willing to have other specialists assisting with their patient, others seem to feel threatened.
This is in no way critical of Audrey or anyone else who has chosen to stop tx. Audrey, you are a real Trooper, and I wish you the best. It's just that I learned to push hard and avail myself of every advantage the insurer would allow. In my case that wasn't 'Dr shopping' but agressive case management of my own case.
God Bless us all, Dave
I am really sick and kind of scared right now. This is my 4th day post tx - and I am afraid that something really bad has happened to my GI area; I am waiting for it to ease up but so far it isn't. I have I think a lump right above my navel, could it be a tear from straining or the opposite of straining? (how is that for delicately put?)
I am still either in the bathroom for hours at a time or unable to go for a week at a time.
I have been in some sort of stomach pain for almost 3 months. When I eat anything at all I get very nauseated.
Finally it all eases up until it starts all over again a bit later.
All of this started shortly after I began tx. Of course, right now the thought of any meds that could do this to me is a horrifying prospect. I did not expect anything like this.
It is Sunday and I do not think there is any need to call anyone today, I guess tomorrow I will call my internist and see what he says.
I am sick at the thought of anymore doctors or tests right now but I guess that is what I will have to do.
Has anyone ever heard of anything like this from 3 months of tx? I am so frustrated, I even left a message for my brother, who is a gyne doc and cannot stand me. (black sheep of the family, that's me)
I wish I could have tolerated the tx , I really really wanted a chance at getting my health back.
I am still either in the bathroom for hours at a time or unable to go for a week at a time.
I have been in some sort of stomach pain for almost 3 months. When I eat anything at all I get very nauseated.
Finally it all eases up until it starts all over again a bit later.
All of this started shortly after I began tx. Of course, right now the thought of any meds that could do this to me is a horrifying prospect. I did not expect anything like this.
It is Sunday and I do not think there is any need to call anyone today, I guess tomorrow I will call my internist and see what he says.
I am sick at the thought of anymore doctors or tests right now but I guess that is what I will have to do.
Has anyone ever heard of anything like this from 3 months of tx? I am so frustrated, I even left a message for my brother, who is a gyne doc and cannot stand me. (black sheep of the family, that's me)
I wish I could have tolerated the tx , I really really wanted a chance at getting my health back.
Sorry to hear about you having those stomach problems. The lump might be a hernia (that is a weakening of the muscle wall in the abd. which you should see a doc about. The constant pains, diarrhea, constipation, and nausea could be Irritable Bowel Syndrome, www.ibsgroup.org or www.eatingforibs.com
are a couple links I found helpful. Or maybe an "allergic" type reaction to the meds/riba in particular. You definately need to contact the GI doc, as much as you hate going to a medical source once again!! OHC
are a couple links I found helpful. Or maybe an "allergic" type reaction to the meds/riba in particular. You definately need to contact the GI doc, as much as you hate going to a medical source once again!! OHC
It's me again, sorry Iwanted to tell you my Dr.'s nurse basically apoligized to me in front of the Dr. for being forgetful and not getting me called back. and we seemed to get the problems out in the open. It was a good visit.
Michelle
Michelle
I already sent this to you in an e-mail butjust in case anyone else might be having the same problems yes it could be a hernia but if you have your gall bladder that is what it sounds like to me. I had mine out when i was 19 due to birth control pills.But the symptoms you are describing sound like that is a possibility. I love you take care and call a good GI
Thanks you guys.
I love you , you are so wonderful. I wish you all could come to my house and we could just hang out.
Scott, altogether, even with 3 tx, I have done a total of 22 shots and riba to match. First time was 2 shots, 2nd time 6 or 7 and this time was 13. I have a friend who has been thru five FULL courses of tx, each time she does get weaker, but she has had cirrhosis for over 20 years, and is not dead, so I think tx is doing her good. They are maybe REMOVING her from the transplant list, because she is not as sick as she was.
Helen, I had my gallbladder removed a long time ago. I know I have a large hiatal hernia, my latest stomach scan showed it. I have had it for years, but I thought that was sposed to be an asymtomatic thing? Yes, I think it is worse, whatever it is. It seems like a lump I can feel now. In fact that is the exact reason they took me off the meds, they said that whatever GI problems I have were being made worse by the tx.
Now I am starting to freak out as well as feel like **** physically.
The last 2 times I went to an ER they took blood and told me to call my Dr in the morning.
So I hope to not go to an ER.
I will let you guys know what happens, if I do not pop like a balloon first and explode all over the floor.
I love you , you are so wonderful. I wish you all could come to my house and we could just hang out.
Scott, altogether, even with 3 tx, I have done a total of 22 shots and riba to match. First time was 2 shots, 2nd time 6 or 7 and this time was 13. I have a friend who has been thru five FULL courses of tx, each time she does get weaker, but she has had cirrhosis for over 20 years, and is not dead, so I think tx is doing her good. They are maybe REMOVING her from the transplant list, because she is not as sick as she was.
Helen, I had my gallbladder removed a long time ago. I know I have a large hiatal hernia, my latest stomach scan showed it. I have had it for years, but I thought that was sposed to be an asymtomatic thing? Yes, I think it is worse, whatever it is. It seems like a lump I can feel now. In fact that is the exact reason they took me off the meds, they said that whatever GI problems I have were being made worse by the tx.
Now I am starting to freak out as well as feel like **** physically.
The last 2 times I went to an ER they took blood and told me to call my Dr in the morning.
So I hope to not go to an ER.
I will let you guys know what happens, if I do not pop like a balloon first and explode all over the floor.
I had a navel hernia repair done in January. Symptoms were same as yours. This easy surgery was done while I am still on tx. The good news is...surgery went well, All of the above symptoms you mentioned went away after surgery, I am still on tx, aaaand some discomfort went away that I did not count on!! An interesting fact from Dr Melissa Palmers book on liver disease is that this caaan be cause from ascites But that is not my case and it doesnt really matter. Good Luck.
does anyone know if this kind of hernia can get strangulated?
audrey; don't freak out is only a question. if it becomes hard and large(no jokes guys), I believe is reason for concern as stomach acid can get trap in that cavity. read up on it, ok?
audrey; don't freak out is only a question. if it becomes hard and large(no jokes guys), I believe is reason for concern as stomach acid can get trap in that cavity. read up on it, ok?
The problem with being a hypochondriac is that we too get really sick. I am somewhat prone to panic. (lol)
I left a message for my doctor. I know I have GERD, a large hiatal hernia, lots of scar tissue, and a cyst on my one ovary. I recently developed high blood pressure and am on toprol. (this is in the last 2 weeks) Oh yes, maybe an aortic aneurism. My dad died of that. But I have had a complete stomach scan in the last 3 months, wouldn't that have found some of these dire conditions that I am freaking myself out with? Plu7s I have had an upper GI recently.
I also THINK I may have IBS, or Chrones disease, colitis, maybe a heart attack, ulcer - etc, or am maybe just losing what is left of my mind. EVERYTIME I eat it gets a lot worse. Anything I eat makes me nauseas too. Once a boyfiend said to me, "it ain't easy being you, is it?"
Today I feel he was right. Maybe it is too soon to expect to feel ok? I have only been off riba for 4 days and it is one week since my last shot. I am sorry to be such a baby but that is what I am today. It feels like there is a lump right over my navel.
Sorry to bother you, but I am sick and scared.
I left a message for my doctor. I know I have GERD, a large hiatal hernia, lots of scar tissue, and a cyst on my one ovary. I recently developed high blood pressure and am on toprol. (this is in the last 2 weeks) Oh yes, maybe an aortic aneurism. My dad died of that. But I have had a complete stomach scan in the last 3 months, wouldn't that have found some of these dire conditions that I am freaking myself out with? Plu7s I have had an upper GI recently.
I also THINK I may have IBS, or Chrones disease, colitis, maybe a heart attack, ulcer - etc, or am maybe just losing what is left of my mind. EVERYTIME I eat it gets a lot worse. Anything I eat makes me nauseas too. Once a boyfiend said to me, "it ain't easy being you, is it?"
Today I feel he was right. Maybe it is too soon to expect to feel ok? I have only been off riba for 4 days and it is one week since my last shot. I am sorry to be such a baby but that is what I am today. It feels like there is a lump right over my navel.
Sorry to bother you, but I am sick and scared.
Yes I believe a hernia can become "strangulated" or incarcerated (trapped) which means a piece of the intestines pop out thru that hole in the muscle covering the abdominal cavity and become trapped, cut off from the rest, also lack blood flow, which can definately cause sepsis, necrosis, and you can end up being very sick, having antibiotics for quite awhile,&/or having that part of the intestine taken out. Not an unusual surgery, but can be avoided by being examined by a good doc. The hiatal hernia is a hole in the diaphragm where your esophagus passes through. Read about the whole thing at www.mayoclinic.com or MedlinePlus -http://www.nlm.nih.gov/medlineplus/healthtopics_h.html
I definately DO NOT think a hiatal hernia can cause diarrhea/constipation, or nausea when you eat. That bulge above your navel does need to be checked as well as your other symptoms. Good luck to you Audrey! Let us know what the doctor says!
I definately DO NOT think a hiatal hernia can cause diarrhea/constipation, or nausea when you eat. That bulge above your navel does need to be checked as well as your other symptoms. Good luck to you Audrey! Let us know what the doctor says!
I don't know about your particular situation, but my GI symptoms actually got worse for a few weeks when I finished tx. Not to say you are in the same situation, you definitely need to call the doc about this.
my brother the gyne doc called me back; he also said hiatal hernia is possible. From straining? Does not explain the nausea, constipation and diarrhea.
But my liver doc said this months ago: the meds CAN exacerbate dormant or mild conditions and that is what I think and they think has happened to me. ( I have had hernias before)
I will call my doc in the am, might need a general surgeon. I will keep you guys informed; for now I am about as freaked out and pain ridden as I have ever been in my life.
But my liver doc said this months ago: the meds CAN exacerbate dormant or mild conditions and that is what I think and they think has happened to me. ( I have had hernias before)
I will call my doc in the am, might need a general surgeon. I will keep you guys informed; for now I am about as freaked out and pain ridden as I have ever been in my life.
I didn't realize until I had to stop how I really felt. Already after taking 2 doses of rib I felt me shoulders tighten and the wierd stomach is back and the wierd unsociable feeling is back. I did my half dose of interferon last night. I know now that your old self will caome back after treatment. That's encouraging for me but also I had only completed #4. Thanks for all of your support during this crazy time.
Michelle
Michelle
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