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Alternate Treatments
My husband was on the Boceprevir trial with Interferon and Ribavarin and had a severe reaction which almost killed him. Both the hospital and our own specialist agree that he cannot take either Interferon or Ribavarin again. He has had Hepatitis C for 32 years and currently is in stage 3 liver disease with what appears are no options for treatment. Does anyone know of alternatives or other trials that may be coming along that do not require the base Interferon and Ribavarin?
Sounds like a reasonable hypothesis. I had a bone marrow biopsy prior to having the infections and prior to my bone marrow shutting down, and there seemed to be a lot of auto immune activity that wasn't present when I did a bone marrow biopsy two or three months ago (several months post tx).
I'm very sorry to hear about the near death experience your husband had to go through. It must have been very scary for you. I'm also sorry that he was not able to go through with treatment.
If I was in your situation, I would contact Dr. Zhang in NYC. He is a doctor in Western Medicine and Chinese Medicine. I have only heard good things about him so far. He has several herbal protocols that can help ppl who cannot treat or are waiting to treat at a later date. Just be sure to periodically check the progress of liver damage.
It will be some years before non- Interferon and non-riba treatment will be on the market, but this could keep him safe until then.
My heart goes out to you both,
Marcia
If I was in your situation, I would contact Dr. Zhang in NYC. He is a doctor in Western Medicine and Chinese Medicine. I have only heard good things about him so far. He has several herbal protocols that can help ppl who cannot treat or are waiting to treat at a later date. Just be sure to periodically check the progress of liver damage.
It will be some years before non- Interferon and non-riba treatment will be on the market, but this could keep him safe until then.
My heart goes out to you both,
Marcia
Wow! That is terrible, I wonder why they weren't giving him weekly blood tests? Unfortunately sounds like someone could have made a big error, I don't know. I wonder if what happened to him and alagirl was a cykotine storm? Meaning a storm after the infection?
Even though your gastro has a lot of experience, it would probably be really beneficial to see a good hepatologist and run all of this by him/her. I actually was doing blood counts twice a week during tx due to the volatility of my blood count.
a gastro who runs a clinic specializing in liver problems. He's had +15 years experience and is associated to two major hospitals here. He has a reputation as one of the best Dr's for dealing with hepatitis C here. They were checking the blood every 2 weeks but although we saw some numbers dropping they said that this was expected. Procrit had limited effect on him, probably blood transfusions would have helped.
I think I had somewhat of an advantage during my treatment because I got referred to a hematologist/oncologist during the first couple of weeks of my tx since my blood count started tanking almost immediately. He and his team were a great support to me and committed to seeing me through tx even if they had to transfuse me multiple times. Since he had a lot of experience with interferon (and very little with riba), he made me aware early on that the interferon could also cause anemia and could eventually shut down the bone marrow. I didn't really take him that seriously when he told me that because I had only heard about the problems with riba and anemia, and I hadn't heard of that many people having serious hemolysis problems with the interferon.
He only had one other hep c patient, so he educated himself very quickly on the side effects of the riba, especially since it caused me such huge problems maintaining my blood count from the very outset. Without the support of him and his team (and the support and advice of folks here), I never would have made it through treatment. He allowed me to take 40,000 units of procrit 2 x per week, and he allowed me to have blood transfusions so that I could stay on treatment. I had my first transfusion only two or three weeks into treatment. At the end, when my bone marrow shut down, my first clue was that, despite neupogen, I began to get severe infections (I got a terrible infection in my arm just from one blood draw, for instance, that required hospitalization with some serious antibiotics). Then treatment was stopped just short of six months (which as an acute, was adequate for me to reach SVR), and my bone marrow completely failed right at, to immediately after, that point and I couldn't make wbc's or rbc's. And I do remember it being quite frightening. Going into tx, we get a lot of warning about the riba causing hemolysis, but not as much typically about the potential for the interferon to affect the bone marrow fairly catastrophically at times - probably because it doesn't affect nearly as many people as the riba does..
I did have pre-existing anemia of chronic disease though, so I did expect problems going into tx, although certainly not problems as severe as I had. I think my lowest hemaglobin was 6.75 or so, but I had a transfusion every 10 to 14 days during treatment, in spite of all of the procrit I was taking. So the tx drugs do affect some people in this area more than others. Some people get terrible infections, and others suffer very little from them during tx. I'm sorry that your husband was one of the unlucky ones who had such difficulty. It's no fun, I know. And having your throat swell shut has to be terrifying.
It is difficult sometimes also that they run tests for infectious agents after the antibiotics are started, sometimes making it very hard, if not impossible, to figure out what type of bacteria you're dealing with. Initially, before the emergency occurred, what type of physician was your husband treating under? Was it a hepatologist or a gastro or?
He only had one other hep c patient, so he educated himself very quickly on the side effects of the riba, especially since it caused me such huge problems maintaining my blood count from the very outset. Without the support of him and his team (and the support and advice of folks here), I never would have made it through treatment. He allowed me to take 40,000 units of procrit 2 x per week, and he allowed me to have blood transfusions so that I could stay on treatment. I had my first transfusion only two or three weeks into treatment. At the end, when my bone marrow shut down, my first clue was that, despite neupogen, I began to get severe infections (I got a terrible infection in my arm just from one blood draw, for instance, that required hospitalization with some serious antibiotics). Then treatment was stopped just short of six months (which as an acute, was adequate for me to reach SVR), and my bone marrow completely failed right at, to immediately after, that point and I couldn't make wbc's or rbc's. And I do remember it being quite frightening. Going into tx, we get a lot of warning about the riba causing hemolysis, but not as much typically about the potential for the interferon to affect the bone marrow fairly catastrophically at times - probably because it doesn't affect nearly as many people as the riba does..
I did have pre-existing anemia of chronic disease though, so I did expect problems going into tx, although certainly not problems as severe as I had. I think my lowest hemaglobin was 6.75 or so, but I had a transfusion every 10 to 14 days during treatment, in spite of all of the procrit I was taking. So the tx drugs do affect some people in this area more than others. Some people get terrible infections, and others suffer very little from them during tx. I'm sorry that your husband was one of the unlucky ones who had such difficulty. It's no fun, I know. And having your throat swell shut has to be terrifying.
It is difficult sometimes also that they run tests for infectious agents after the antibiotics are started, sometimes making it very hard, if not impossible, to figure out what type of bacteria you're dealing with. Initially, before the emergency occurred, what type of physician was your husband treating under? Was it a hepatologist or a gastro or?
He was 12 weeks into treatment when this happened and the treatment had appeared to be working as it was undetectable at 8 weeks. He also had been on the Pocrit since 5 weeks as his HGB was low (86 at 5 wks into treatment). The penicillin was administered after he was admitted to the hospital with the infection.
They were not able to tell us what infection he had as all the tests that they administered came back negative. They started testing for common offenders when he was first admitted to hospital but also started him immediately on wide spectrum because of the obvious infection. By the time he was transferred, less than 24 hours later, to the other hospital which had more resources, he had been on broad spectrum antibiotics for almost 24 hours and it apparently can cause a false negative so they were never able to determine the specific infection.
Initially there was talk about immediately unblinding him however the ICU Dr's did not bother pushing the issue as it would have no impact on his treatment which was to fight the infection and keep him alive until his body could recover. The drug company agreed about a month ago to unblind him but our Dr is still waiting. We want it unblinded because although it may not have caused the problem, it may have been a contributing factor.
His Dr has said he would not put him on treatment again that involved interferon or ribavarin and nor would my husband agree to be on that treatment again.
They were not able to tell us what infection he had as all the tests that they administered came back negative. They started testing for common offenders when he was first admitted to hospital but also started him immediately on wide spectrum because of the obvious infection. By the time he was transferred, less than 24 hours later, to the other hospital which had more resources, he had been on broad spectrum antibiotics for almost 24 hours and it apparently can cause a false negative so they were never able to determine the specific infection.
Initially there was talk about immediately unblinding him however the ICU Dr's did not bother pushing the issue as it would have no impact on his treatment which was to fight the infection and keep him alive until his body could recover. The drug company agreed about a month ago to unblind him but our Dr is still waiting. We want it unblinded because although it may not have caused the problem, it may have been a contributing factor.
His Dr has said he would not put him on treatment again that involved interferon or ribavarin and nor would my husband agree to be on that treatment again.
I'm surprised they didn't unblind him when he went into the hospital. It says on my consent form that they will unblind in an emergency.
If his problems were connected to anemia that is one of the sx of boceprevir.
If his problems were connected to anemia that is one of the sx of boceprevir.
I'm curious about how long he was on tx before he had this reaction? My bone marrow failed pretty completely just before six months into tx due to the interferon. Prior to that I had 14 transfusions because the riba drove my blood count down so low. I was on procrit during my entire tx, and on neupogen several times. Just before and after my bone marrow failed, I did start to have a lot of infections.
I think what Rocker was asking is, what type of infection did your husband have, and was the penicillin administered before or after his throat closed off.
Typically, I believe Epiglottis is caused by bacterial infections. Certainly if his bone marrow shut down or was working ineffectively, he would have been more prone to a systemic bacterial infection. So it may be not so much that he was allergic to the tx meds, but that he wasn't tolerating them. That's why I'm wondering how far into treatment he was before this occurred - if the reaction happened after a few months of treatment, then you kind of wonder if he could have been helped if they had started the helper drugs like procrit and neupogen earlier on. If it happened very quickly into treatment that his bone marrow was overwhelmed, then it seems (to me anyway, and I'm certainly no doctor) that there is less likelihood that he would ever be able to use those drugs, even with proactive helper medications.
I think what Rocker was asking is, what type of infection did your husband have, and was the penicillin administered before or after his throat closed off.
Typically, I believe Epiglottis is caused by bacterial infections. Certainly if his bone marrow shut down or was working ineffectively, he would have been more prone to a systemic bacterial infection. So it may be not so much that he was allergic to the tx meds, but that he wasn't tolerating them. That's why I'm wondering how far into treatment he was before this occurred - if the reaction happened after a few months of treatment, then you kind of wonder if he could have been helped if they had started the helper drugs like procrit and neupogen earlier on. If it happened very quickly into treatment that his bone marrow was overwhelmed, then it seems (to me anyway, and I'm certainly no doctor) that there is less likelihood that he would ever be able to use those drugs, even with proactive helper medications.
Well,it sure looks like it may be an allergic reaction to the SOC drugs...i have heard of this before...im no expert on thie stuff...but if the PI drugs are not the culprit,they are looking at doing tx with the PI`s minus the peg/riba.
He was given a transfusion to raise his platelettes as they were low and he was at risk of bleeding, also a transfusion of red blood cells to raise the HGB and a drug was given, I think it was GFC or GFS but I can't remember now, to stimulate the growth of the white blood cells.
He got an infection while on treatment and instead of his white cells responding approriately they simply stopped being produced. This resulted in epiglotitis which closed his airway which resulted in him coding in the ER room. The tracheotomy was then done to open the airways and he was hit with broad spectrum antibiotics to kill what was causing the infection. He was then transferred to another hospital that specializes in blood diseases and a biopsy was done that confirmed his bone marrow had been compromised which they felt due to the interferon/ribavarin. (this wasn't one doctor it was an ICU team which was also in consultation with our specialist).
my mother is allergic to tetricicilllin....her throat swelled up and she almost died too...maye this is your problem
im asking her did the doc prescibe it hoping to rasie the whites...some docs are quacks
Penicillin is prescribed to treat an infection, not to raise white cells. White cells defend you against infections. So during an infection, they usually go up....unless you're taking meds that lower them (like Peg).
Co
Co
Why did theu give pinicellin?...to raise his white cell count or did he get an infection...there could have been a reactionthe the pennicilln too
The trial hasn't been unblinded so we don't know but it was a known side effect of the RIBA/PEG. Basically he had low HGB <90 and was Pocrit for it. His WBC and Platlettes were low but within normal. He got sick (they're not sure with what has all blood tests came back negative but he had by that time been on mega doses of penicillen) and his white cells instead of responding simply tanked. By the time we got him to the hospital he had no WBC, low HGB <63 and low platelettes. His throat swoll up and he had to have a tracheotomy to breathe. A few transufsions later and lots of drugs, 2 wks in ICU and he woke up. He's still recovering now.
Sorry to hear this...ive never heard of the TX almost killing someone...did the docs confirm it was the RIBA/PEG...or was it the Boceprevir?....
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