Aa
Incivek Therapy 2 week Labs
My husband will be 62 this month. He started Triple Therapy on 9-8-12. This has been pretty hard on him. On day 5 he developed a rash that rapidly progressed from head to toe. It has now cleared up after 1week of RX cream & Hydroxyzine. He has had fatigue, diarrhea, night sweats, ankle swelling & nosebleeds off & on for the past 3 weeks.
His 2 week labs show that his platelet count has dropped from 130 to 79. His Hgb dropped from 13.8 to 11.7. His Hct went from 39.6 to 34.7. His RBC went from 4.20 to 3.68. I am alarmed by these rapid drops in his blood count, especially the 40% drop in his platelets. He relapsed from the Riba/Peg therapy in 2004. He had to reduce his RX 4 months into therapy due to low platelets at that time. I'm worried that his blood counts will get worse as treatment goes on. Has anyone here taking Incivek had similar SX this early into treatment?
His 2 week labs show that his platelet count has dropped from 130 to 79. His Hgb dropped from 13.8 to 11.7. His Hct went from 39.6 to 34.7. His RBC went from 4.20 to 3.68. I am alarmed by these rapid drops in his blood count, especially the 40% drop in his platelets. He relapsed from the Riba/Peg therapy in 2004. He had to reduce his RX 4 months into therapy due to low platelets at that time. I'm worried that his blood counts will get worse as treatment goes on. Has anyone here taking Incivek had similar SX this early into treatment?
It is not to late to switch doctors. I would consult with a Hepatologist ASAP.
Best of luck
Best of luck
Hi, I am so sorry for what you and your husband are experiencing
I am wondering if your husband has signed a form allowing you to have his information.
As someone who has to advocate for my husband I was told they would not give me any info without his signature. Of course that was only after I demanded information. Up until then no one said anything, as if waiting for my husband to realize it. In his condition he did not know anything
This doctor should have done a biopsy, liver enzymes may not indicate the severity of liver damage
I had slightly elevated enzymes when I was diagnosed with HCV, then 2 weeks later biopsy showed I was in the beginning of cirrhosis. The doc said that my blood work did not indicate how damaged my liver was
To me it is irresponsible for this doctor to start tx without knowing the level of damage. Just as it was irresponsible for my doctor to perform a biopsy in his surgical suite as I could have bled out. Hindsight is 20/20.
If he was too damaged then this tx could throw him into decompenstated cirrhosis.
Again I am so sorry, I know this is really frightening. I am praying for you
Dee
I am wondering if your husband has signed a form allowing you to have his information.
As someone who has to advocate for my husband I was told they would not give me any info without his signature. Of course that was only after I demanded information. Up until then no one said anything, as if waiting for my husband to realize it. In his condition he did not know anything
This doctor should have done a biopsy, liver enzymes may not indicate the severity of liver damage
I had slightly elevated enzymes when I was diagnosed with HCV, then 2 weeks later biopsy showed I was in the beginning of cirrhosis. The doc said that my blood work did not indicate how damaged my liver was
To me it is irresponsible for this doctor to start tx without knowing the level of damage. Just as it was irresponsible for my doctor to perform a biopsy in his surgical suite as I could have bled out. Hindsight is 20/20.
If he was too damaged then this tx could throw him into decompenstated cirrhosis.
Again I am so sorry, I know this is really frightening. I am praying for you
Dee
Thanks for your reply Idyllic. My husband started treatment on Sept. 8th so he is about 3 1/2 weeks into treatment. I made sure that he had another CBC yesterday.
I agree that the 2003 Biopsy report is too outdated to mean much at this point. I'm going to have to research AST/ALT ratios.
Quote: "An AST:ALT ratio higher than one (where the level of AST is higher than the ALT) could also indicate cirrhosis in a person that doesn't have alcoholic hepatitis. When greater than 1.0 but less than 2.0, it is likely to be associated with Cirrhosis."
He does not have alcoholic hepatitis
I agree that the 2003 Biopsy report is too outdated to mean much at this point. I'm going to have to research AST/ALT ratios.
Quote: "An AST:ALT ratio higher than one (where the level of AST is higher than the ALT) could also indicate cirrhosis in a person that doesn't have alcoholic hepatitis. When greater than 1.0 but less than 2.0, it is likely to be associated with Cirrhosis."
He does not have alcoholic hepatitis
Digging up old medical records from 2004 might be moot at this point. I am not sure how much energy you should devote to a task like that given 8 years has lapsed. Maybe starting anew might not be a bad idea.
_______________-
Your husbands lab values look OK so far. It sounds like your husband is on week 8 or so (??). I had weekly labs during the 12-week Incivek period with periodic TSH and Uric Acid as well as a Viral Load on week 4 and week 12:
http://www.medhelp.org/user_photos/show/295417?personal_page_id=414409
____________________
Like others (and not knowing more of the facts) I am somewhat alarmed by your doctor's apparent lack of knowledge, concern or expertise about his patient's medical condition. If it were me I would not be as concerned since I treated before but since I too advocate on my husband's behalf (for an entirely different yet equally obscure condition) I find I can be a particularity unpleasant person if I feel like a clinician is not being candid or entirely level with me.
_____________
A low viral load is not an indicator of the stage of fibrosis a person has. I always thought liver enzymes within the reference interval were a good sign no matter what. I was unaware that additional and more meaningful analysis could be derived from these figures:
"So with Alt of 36 and Ast of 27":
An AST:ALT ratio higher than one (where the level of AST is higher than the ALT) could also indicate cirrhosis in a person that doesn't have alcoholic hepatitis. When greater than 1.0 but less than 2.0, it is likely to be associated with Cirrhosis.
http://hepatitis.about.com/od/diagnosis/a/LiverEnzymes.htm
___________________
I know some doctors think a biopsy is not necessary if a patient is going to treat anyway however from what I have seen that tends to apply to treatment naive folks. Not a fact ~ just an observation. However being that he has already started treatment I am uncertain how much to focus on this right now..
________________
Lastly I admit I find the info in Frijole's post both interesting and somewhat alarming.
Learning how to advocate on someone's behalf is like having to learn a new language. It can be complicated and it takes time you may not necessarily have. It means be learning a lot on your own, being humble and asking questions and worst of all (for me) is stepping out of your comfort zone and being persistent and maybe even confrontational if the situation warrants it.
It takes time and practice but I have no doubt that you will make lots of head way in this department :)
_______________-
Your husbands lab values look OK so far. It sounds like your husband is on week 8 or so (??). I had weekly labs during the 12-week Incivek period with periodic TSH and Uric Acid as well as a Viral Load on week 4 and week 12:
http://www.medhelp.org/user_photos/show/295417?personal_page_id=414409
____________________
Like others (and not knowing more of the facts) I am somewhat alarmed by your doctor's apparent lack of knowledge, concern or expertise about his patient's medical condition. If it were me I would not be as concerned since I treated before but since I too advocate on my husband's behalf (for an entirely different yet equally obscure condition) I find I can be a particularity unpleasant person if I feel like a clinician is not being candid or entirely level with me.
_____________
A low viral load is not an indicator of the stage of fibrosis a person has. I always thought liver enzymes within the reference interval were a good sign no matter what. I was unaware that additional and more meaningful analysis could be derived from these figures:
"So with Alt of 36 and Ast of 27":
An AST:ALT ratio higher than one (where the level of AST is higher than the ALT) could also indicate cirrhosis in a person that doesn't have alcoholic hepatitis. When greater than 1.0 but less than 2.0, it is likely to be associated with Cirrhosis.
http://hepatitis.about.com/od/diagnosis/a/LiverEnzymes.htm
___________________
I know some doctors think a biopsy is not necessary if a patient is going to treat anyway however from what I have seen that tends to apply to treatment naive folks. Not a fact ~ just an observation. However being that he has already started treatment I am uncertain how much to focus on this right now..
________________
Lastly I admit I find the info in Frijole's post both interesting and somewhat alarming.
Learning how to advocate on someone's behalf is like having to learn a new language. It can be complicated and it takes time you may not necessarily have. It means be learning a lot on your own, being humble and asking questions and worst of all (for me) is stepping out of your comfort zone and being persistent and maybe even confrontational if the situation warrants it.
It takes time and practice but I have no doubt that you will make lots of head way in this department :)
I don't know the facts of the particular case.
I just know that, based on 19 years of requesting medical records as a regular and constant part of my job, many (but not all) facilities toss inactive files after seven years or so. That may change / be changing as more and more go (and have gone) electronic.
Just offered it up as a possible explanation.
I just know that, based on 19 years of requesting medical records as a regular and constant part of my job, many (but not all) facilities toss inactive files after seven years or so. That may change / be changing as more and more go (and have gone) electronic.
Just offered it up as a possible explanation.
Just to chime in on medical records....I had a mammogram in 2011 and the one before that was in 2001 in a different state. The hospital called the other hospital to get a copy of my 2001 mammagram. They had it for comparison in about a week. So they have copies of his biopsy.
Her husband relapsed from Hep C. He has been seen at least yearly by the doctor. His medical records have been active. The biopsy report should be in the chart.
" I am sorry he did not and it is distressing that they cannot find your records from 2003"
7 years is about the time that most med facilities keep records w/o any activity occurring. After that, File 13.
7 years is about the time that most med facilities keep records w/o any activity occurring. After that, File 13.
The doctors didn't tell you that he had cirrhosis because they really don't know whether he has it without a recent liver biopsy. They should have been concerned about the possibility though, and they really should have ordered the biopsy. I'm appalled whenever I hear of people being told their liver disease isn't progressing and the doctor hasn't done a biopsy but is just going on an educated guess. Way too many of us have been told that right up until the point where a medical crisis made it suddenly obvious that things actually had been progressing all along (I'm a member of that club too). Try to persuade your husband to consider switching to a hepatologist, and if he insists on staying with a less-trained doctor, then he needs to put a lot of time and effort into studying the problem and the current standards of care so he can be a safety check for his own care. He will have to be outspoken about anything that seems like substandard care and demand that the correct protocols be followed. It's a lot more effort than just finding a doctor who really knows what he's doing - though actually one really should keep an eye on even the best of doctors, as anyone can make a mistake. Good luck, and let us know how things are going.
Good for you advocating for your husband. Weekly labs are informative, and in my opinion a must. I hope hour husband will agree to seek a Hepa and also have another liver biopsy right away. Best of luck to you both.
Thank you for your response. I agree with everything you've told me. I
now believe that I should have tried to learn more about my husbands HCV & liver damage before he started treatment. When he was treated by the same Dr. in 2004 I was trying to deal with my own chronic health problems and was unable to take the time to learn about his tx. I did, however, realize that he was not getting the best medical care. After his relapse in 2004 he has had yearly checkups with this Dr. and he has been told that his liver damage was not progressing. I now realize that he should have had a biopsy before treatment. His Dr. told us that he had a low viral load on Feb, of this year (HCV PCR 486000 IU/mL &5.69 log IU/mL) I don't know what those numbers mean. He also said his AST was 36 & ALT was 27 last month, when I asked what that meant he has he doesn't have much inflammation so he should be easy to treat. I wish I would have known then what I know now. I am now worried that he does have cirrhosis. He has seemed to be in good health until last April when he had swelling in ankles, low thyroid & protein in his urine. If he does have cirrhosis I am amazed that his Nephrologist, G.P. and G.I. Dr.'s didn't let him know. I called the Dr.'s office the week before he started treatment on the advice of the RN from the specialty pharmacy we are using requesting weekly labs. They ignored this request. After what I've learned from all of the nice people on this forum I am calling tomorrow morning and demanding a CBC lab slip or a written and signed statement of why they are refusing my request. Thanks so much for your time & concern
now believe that I should have tried to learn more about my husbands HCV & liver damage before he started treatment. When he was treated by the same Dr. in 2004 I was trying to deal with my own chronic health problems and was unable to take the time to learn about his tx. I did, however, realize that he was not getting the best medical care. After his relapse in 2004 he has had yearly checkups with this Dr. and he has been told that his liver damage was not progressing. I now realize that he should have had a biopsy before treatment. His Dr. told us that he had a low viral load on Feb, of this year (HCV PCR 486000 IU/mL &5.69 log IU/mL) I don't know what those numbers mean. He also said his AST was 36 & ALT was 27 last month, when I asked what that meant he has he doesn't have much inflammation so he should be easy to treat. I wish I would have known then what I know now. I am now worried that he does have cirrhosis. He has seemed to be in good health until last April when he had swelling in ankles, low thyroid & protein in his urine. If he does have cirrhosis I am amazed that his Nephrologist, G.P. and G.I. Dr.'s didn't let him know. I called the Dr.'s office the week before he started treatment on the advice of the RN from the specialty pharmacy we are using requesting weekly labs. They ignored this request. After what I've learned from all of the nice people on this forum I am calling tomorrow morning and demanding a CBC lab slip or a written and signed statement of why they are refusing my request. Thanks so much for your time & concern
per you, "He had ankle swelling several months ago and was referred to a Nephrologist for protein in his urine. After several tests he was told that he did not have kidney damage & the swelling and protein were most likely caused by the HCV. ... His Albumin is low & I've read that can cause water to leak from your blood vessels & cause swelling. "
From a book I am reading on cirrhosis:
"Albumin which is secreted by the liver, is the most plentiful protein in your blood. There are many reasons why a person's albumin levels may be low - kidney disease, for example....... but one of the most disturbing reasons is liver damage. People with damaged livers often have low levels of albumin in their blood. .... the absence of the protein can aggravaate fluid buildups known as ascites and edema."
eagledance, it seems like this should have been the trigger for your hubby to have a liver biopsy. I am sorry he did not and it is distressing that they cannot find your records from 2003. He should be able to sign a release and get them from the hospital where the biopsy was done if you know the date.
"I'm also convinced that the nosebleeds are from the low platelets."
I think you are on target there too. The liver manufactures clotting agents and stores Vitamin K, necessary for clotting. It could be low. You can get an injection of vitamin K, but if that does not help, it could be an indicator that the liver is stressed and unable to store the vitamin K.
The low platelets and the edema and the nose bleeding may be indicators of early cirrhois. I know for me treating this time with early cirrhosis was a lot harder than the first time without. Age too - I am a little older than your husband - makes it harder. Has your doctor indicated that he could treat for 24 weeks? I would think he will have to go the 48. If he can just get the diarreha and rash under control I hope he will be able to. I would also be very concerned if I didn't know what the anemia strategy was at this point.
I too treated with a GI first time. This time I chose a hepatologist 350 miles away for treatment. It was inconvenient but necessary to me. Sometimes I flew in and out the same day and sometimes my hubby came with me. I wish your hubby could see the benefit. In my way of thinking, now that I am cirrhotic, I will need contact with a liver specialist ongoing to monitor the cirrhosis.
I wish you the best on this journey
frijole (bean)
From a book I am reading on cirrhosis:
"Albumin which is secreted by the liver, is the most plentiful protein in your blood. There are many reasons why a person's albumin levels may be low - kidney disease, for example....... but one of the most disturbing reasons is liver damage. People with damaged livers often have low levels of albumin in their blood. .... the absence of the protein can aggravaate fluid buildups known as ascites and edema."
eagledance, it seems like this should have been the trigger for your hubby to have a liver biopsy. I am sorry he did not and it is distressing that they cannot find your records from 2003. He should be able to sign a release and get them from the hospital where the biopsy was done if you know the date.
"I'm also convinced that the nosebleeds are from the low platelets."
I think you are on target there too. The liver manufactures clotting agents and stores Vitamin K, necessary for clotting. It could be low. You can get an injection of vitamin K, but if that does not help, it could be an indicator that the liver is stressed and unable to store the vitamin K.
The low platelets and the edema and the nose bleeding may be indicators of early cirrhois. I know for me treating this time with early cirrhosis was a lot harder than the first time without. Age too - I am a little older than your husband - makes it harder. Has your doctor indicated that he could treat for 24 weeks? I would think he will have to go the 48. If he can just get the diarreha and rash under control I hope he will be able to. I would also be very concerned if I didn't know what the anemia strategy was at this point.
I too treated with a GI first time. This time I chose a hepatologist 350 miles away for treatment. It was inconvenient but necessary to me. Sometimes I flew in and out the same day and sometimes my hubby came with me. I wish your hubby could see the benefit. In my way of thinking, now that I am cirrhotic, I will need contact with a liver specialist ongoing to monitor the cirrhosis.
I wish you the best on this journey
frijole (bean)
Thank you for your posts and the contact information. I would love for my husband to find a more qualified Dr. and I tried to convince him to do so before he started treatment. He's decided to stay with his current Dr. anyway. I feel so helpless watching him suffer and not trusting that he is getting the best medical care. I voiced my concerns to his Dr. about his low platelets before he started treatment and the Dr. said that was not a concern. He had ankle swelling several months ago and was referred to a Nephrologist for protein in his urine. After several tests he was told that he did not have kidney damage & the swelling and protein were most likely caused by the HCV. He got the swelling under control with a strict low sodium diet but it's come back since he started TX. His Albumin is low & I've read that can cause water to leak from your blood vessels & cause swelling. I'm also convinced that the nosebleeds are from the low platelets. I requested that he have weekly blood work but the Dr. ignored my request & is going with every 2 weeks. As far as the records from my husbands prior treatment in 2004, they are "unable to locate them" Sorry for the long winded post. I really appreciated being able to share my fears with people that understand. Thank you so much.
Hi. Jules asked me to check out this thread. I did 48 weeks, but with VIC. I don't see anything too disconcerting in the numbers. Even the platelets, although low, are not too low to continue.
Any drop in HGB of over 2 points is going to knock one out and he has hit that early on, at 2 weeks. So that is something to watch closely. Did you and the doctor talk about what to do about anemia before treating? Please get this straight with him as soon as possible. If he is unwilling to help except for dose reductions, perhaps he would refer him to a hemotologist who will monitor his blood.
I suffered with the ankle swelling and leg rash throughout tx and finally 2 months post tx went to a dermatologist and got a steroid cream and hydroxine for the itching. When the rash (which she dx'ed as Asteatotic exzema) disappeared, so did (most of ) the swelling. The swelling of the ankles can also be a sign of cirrhosis. I have early cirrhosis so really don't know if the swelling was treatment related or from cirrhosis.
When he had the bx in 2003, what did it say. If you don't have it why don't you ask for a copy. In fact, with your GI so unwilling to give you info, I would ask for all records of everything.
Any drop in HGB of over 2 points is going to knock one out and he has hit that early on, at 2 weeks. So that is something to watch closely. Did you and the doctor talk about what to do about anemia before treating? Please get this straight with him as soon as possible. If he is unwilling to help except for dose reductions, perhaps he would refer him to a hemotologist who will monitor his blood.
I suffered with the ankle swelling and leg rash throughout tx and finally 2 months post tx went to a dermatologist and got a steroid cream and hydroxine for the itching. When the rash (which she dx'ed as Asteatotic exzema) disappeared, so did (most of ) the swelling. The swelling of the ankles can also be a sign of cirrhosis. I have early cirrhosis so really don't know if the swelling was treatment related or from cirrhosis.
When he had the bx in 2003, what did it say. If you don't have it why don't you ask for a copy. In fact, with your GI so unwilling to give you info, I would ask for all records of everything.
I was on Incivek. I just completed 48 weeks of treatment (12 weeks Interferon, Riba, Incivek and an additional 36 weeks of Interferon and Riba).
His rash came on early but it is a good thing it is now under control with Hydroxyzine and topicals.
The fatigue and sweats are normal when on these drugs, along with multiple other side effects such as no energy, no motivation, malaise, muscle and joint aches, cognitive problems/brain fog, and others.
The Incivek causes diarrhea but it would be advisable to get that under control with something like Loperimide. It is the diarrhea and loose stools that cause a lot of the anal/rectal problems. If the stools can be kept firm, then the anal/rectal problems are not much of a problem, at least not a severe problem.
A two week hemoglobin drop of 2.1 points bears watching.The Hgb will drop, but at 2 weeks it has gone down quite a bit. Plus, his was not that high to begin with (mine was 15.8 when I started). His platelet count drop from 130 to 79 in two weeks seems to me to be a good sized drop.
He should be having weekly complete blood count tests, not only because of his Hgb and platelets drops, but also because he has a history of blood count problems during past treatments. so he should have a blood count drawn today, in my opinion.
I would be concerned about the nose bleeds and the ankle swelling. For one thing, his last liver biopsy was 2003. That is 9 years ago. You don't know what the fibrosis stage was in 2003, but even if you did, the fibrosis stage could have changed dramatically in 9 years. People can go from Stage 1-2 to Stage 3-4 in as little as 3 years or less. So basically, no ones knows if he is at Stage 1 or if he has cirrhosis (Stage 4).
For another thing, his platelet count was low when he started Tx and is now even much lower than that. A normal platelet count is between 150,000 and 450,000. A platelet count below 150,000 per mcL is called thrombocytopenia. So, at 130 he was already below normal when he started Tx. In 2 weeks time, as you say, it has dropped to 79. I would be concerned. His nose bleeds could be from his low platelet count.
If he has never had ankle swelling before, that would also concern me. There has to be a reason they are swelling.
What I would want to know (if I were you) is this: What is his liver status: How much liver fibrosis does he have. If he currently has Stage 4 liver fibrosis (cirrhosis) then treatment could be a bigger problem for him than if he was only at Stage 1 or 2. Cirrhotics can have more complications from treatment than people who do not have cirrhosis. Both the low platelets and the ankle swelling could be a manifestation of cirrhosis. Cirrhotics should be under the care of a Hepatologist because they are the doctors who know how to manage cirrhosis and the complications of cirrhosis. Regular doctors don't have the expertise to handle cirrhotics.
So, if I were you, I would get a complete blood count today (a 3 week complete blood count) and then get a complete blood count every week. Every 2 weeks is not enough. The various tests that measure his clotting ability should also be checked. A metabolic panel might be a good idea to help determine what is causing the ankle swelling.
Also, if I was you, I would call today, right now, and find a competent and knowledgeable Hepatologist to take over his care. Here are some contact numbers in your area:
Oklahoma University Medical Center
call 405-271-2222
Or:
Hany A. Elbeshbeshy, M.D.
Specialty
Transplant Medicine
Hepatology/Liver Problems
Hospital
Nazih Zuhdi Transplant Institute
Contact Info 405-949-3349
Or:
INTEGRIS Baptist Medical Center
3300 NW Expressway
Oklahoma City, OK 73112
405-949-3011
Best of luck. Keep us posted and ask any questions you may have.
His rash came on early but it is a good thing it is now under control with Hydroxyzine and topicals.
The fatigue and sweats are normal when on these drugs, along with multiple other side effects such as no energy, no motivation, malaise, muscle and joint aches, cognitive problems/brain fog, and others.
The Incivek causes diarrhea but it would be advisable to get that under control with something like Loperimide. It is the diarrhea and loose stools that cause a lot of the anal/rectal problems. If the stools can be kept firm, then the anal/rectal problems are not much of a problem, at least not a severe problem.
A two week hemoglobin drop of 2.1 points bears watching.The Hgb will drop, but at 2 weeks it has gone down quite a bit. Plus, his was not that high to begin with (mine was 15.8 when I started). His platelet count drop from 130 to 79 in two weeks seems to me to be a good sized drop.
He should be having weekly complete blood count tests, not only because of his Hgb and platelets drops, but also because he has a history of blood count problems during past treatments. so he should have a blood count drawn today, in my opinion.
I would be concerned about the nose bleeds and the ankle swelling. For one thing, his last liver biopsy was 2003. That is 9 years ago. You don't know what the fibrosis stage was in 2003, but even if you did, the fibrosis stage could have changed dramatically in 9 years. People can go from Stage 1-2 to Stage 3-4 in as little as 3 years or less. So basically, no ones knows if he is at Stage 1 or if he has cirrhosis (Stage 4).
For another thing, his platelet count was low when he started Tx and is now even much lower than that. A normal platelet count is between 150,000 and 450,000. A platelet count below 150,000 per mcL is called thrombocytopenia. So, at 130 he was already below normal when he started Tx. In 2 weeks time, as you say, it has dropped to 79. I would be concerned. His nose bleeds could be from his low platelet count.
If he has never had ankle swelling before, that would also concern me. There has to be a reason they are swelling.
What I would want to know (if I were you) is this: What is his liver status: How much liver fibrosis does he have. If he currently has Stage 4 liver fibrosis (cirrhosis) then treatment could be a bigger problem for him than if he was only at Stage 1 or 2. Cirrhotics can have more complications from treatment than people who do not have cirrhosis. Both the low platelets and the ankle swelling could be a manifestation of cirrhosis. Cirrhotics should be under the care of a Hepatologist because they are the doctors who know how to manage cirrhosis and the complications of cirrhosis. Regular doctors don't have the expertise to handle cirrhotics.
So, if I were you, I would get a complete blood count today (a 3 week complete blood count) and then get a complete blood count every week. Every 2 weeks is not enough. The various tests that measure his clotting ability should also be checked. A metabolic panel might be a good idea to help determine what is causing the ankle swelling.
Also, if I was you, I would call today, right now, and find a competent and knowledgeable Hepatologist to take over his care. Here are some contact numbers in your area:
Oklahoma University Medical Center
call 405-271-2222
Or:
Hany A. Elbeshbeshy, M.D.
Specialty
Transplant Medicine
Hepatology/Liver Problems
Hospital
Nazih Zuhdi Transplant Institute
Contact Info 405-949-3349
Or:
INTEGRIS Baptist Medical Center
3300 NW Expressway
Oklahoma City, OK 73112
405-949-3011
Best of luck. Keep us posted and ask any questions you may have.
After the first two weeks of incivek my platelet count dropped to 100 (hgb and after 4 weeks it went down to 80. My doctor told me not to be concerned too much on platelets as my hgb dropped by 3 points to 13 during that time, My WBC was around 3 in the first 4 weeks. For the rest of the incivek platelets stayed at 79-80. Once I completed incivek, there was an implrovement on hgb, platelets. I am in my 21th week platelets are still around 80, hgb and other numbers are low but not alarming.
You really should see a qualified Hepa Dr. Is there anyway you can find another Dr to take him while he is on tx? And I would call this GI and tell him you want a copy of that 2003 biopsy report. They probably have it on microfilm somewhere but I would demand it. And make sure you get copies of all of his labs reports. Since he just started he should be getting weekly labs....I hope :)
These incompetent Drs blow my mind!!!!!!
These incompetent Drs blow my mind!!!!!!
I wish he would have gone to a Hep. Dr. Instead he is using the same GI that has treated him since 2003. I am not happy with this Dr . He hasn't answered my questions about the stage of his liver or anything thing else! The only thing I can do is try to help my husband stay on top of the SX (like the rash) and help him stay on his RX schedule & fat requirements. I have learned so much from reading the Hep C treatment forums and learned nothing from his Dr.
In my opinion I think a biopsy from 2003 would be seriously outdated. What was his grade/stage then? I think the Dr should have done another one before starting this current tx. JMHO
Thanks Jules,
He hasn't had a biopsy since 2003. His Dr. hasn't been very forthcoming. He could only tell me he was GT1. He will see us next week and I have plenty of questions for him. Thanks for your reply.
He hasn't had a biopsy since 2003. His Dr. hasn't been very forthcoming. He could only tell me he was GT1. He will see us next week and I have plenty of questions for him. Thanks for your reply.
Hi Eagle I am on triple with Vic and am on week 12. Your hubby's drop in numbers is pretty much expected. I think most of us have experienced those kind of drops if not worse. So I wouldn't be too concerned at this point and time.
Did you speak to his Dr about the ankle swelling and nosebleeds? That would be of a conern I would think. Also did he have a biopsy? What is his GT, IL28b test, etc.
I am sure the incivek crew will chime in to help you out more. Take care!
Jules
Did you speak to his Dr about the ankle swelling and nosebleeds? That would be of a conern I would think. Also did he have a biopsy? What is his GT, IL28b test, etc.
I am sure the incivek crew will chime in to help you out more. Take care!
Jules
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Pre-tx /2 wks /4wks /5wks
HGB 14.7 11.9 10.6 11.1
RBC 4.67 3.85 3.34 3.33
WBC 4.1 1.9 1.4 1.7
ANC 2.82 1.06 0.65 0.79
Platelets 144 83 88 81
At week 4 it was the ANC that concerned my doctor, although he wouldn't intervene in any way unless it dropped below 0.5. As you can see, the numbers tend to bounce around even when treatment remains consistent. In my case every time throughout my tx that they got low enough to trigger an extra CBC, they had partially recovered again on their own as of that next test.
Your numbers don't sound terribly alarming, but some of the other things you've told us do alarm me, such as no recent biopsy before treatment, the poor communication, the nosebleeds and the ankle swelling. I had fatigue, rash, night sweats (and day sweats too), and diarrhea throughout tx, and I think they are pretty common, but the other stuff is not so common. I hope you can switch to a more highly-trained physician. Best wishes!