Just an update: We got a letter from the doc yesterday saying that he did not feel comfortable treating my husband any more 'due to his diabetes and severe allergic reaction". My husband called repeatedly, and finally spoke with him. They are referring us to U of M hospital (we have been there before, and actually love that program, but the distance is a bit of a pain). Unfortunately, we can't get in until mid July.
The good news is that he is undected but I'm concerned without the interferon/ribaviron it will not stay that way. We are seeing his primary doc on monday to see what he thinks we should do. He is off the steriods now, and feels the best he has in years, so that's been fun to see!
We have been spoiled by some exceptionally good and caring doctors, and this was our first experience with someone who either was too busy or not interested in this type of treatment. I will chalk it up as a lesson learned and just move forward from here.
Thanks to all for the support and encouragement. I hope to be on here more, and offer the same support to others.
Donnie130 said
Mar 30, 2012
Sandy I just read your post and while I can understand if the doctor thought it was too dangerous for your husband to continue; however I do not understand the rude way you were called and told not to come back. I think he made a mistake and doesn't want to be reminded. Or could it be a CYA type of thing? I have heard of others who had to stop Incivek because of the rash however they continued on with the tx. It is so irritating and I am so very sorry, I recently finished the triple tx with Incivek and I had some very rough times where the doctor did not know what was going on with me. I had to call Vertex and the Specialty Pharmacy to discover I was having a horrible drug reaction. I wish you and your husband the very best.
Isiscat2011 said
Mar 20, 2012
Excellent points, Brad, and good advice.
After my tx was discontinued, I requested a copy of my medical records just to try to understand what had happened. As my doc was explaining things, particularly at the end when things were at their worst, I could barely make out what he was saying.
When you are in the middle of these things everything can just become a big blur. It takes a bit of time and distance to make sense of it all and get some perspective.
Isiscat2011 said
Mar 20, 2012
Hi Sandpsych: I try to be supportive of docs who make the effort to treat Hep C patients with the triple therapies because most docs just don't want the headaches. At least these ones are willing to try. But...Sheesh.....I would give most of them failing grades for their lack of patient education and support. I hope they get their acts together soon on this front!!
So, I guess this means this doc is through. Apparently, when he's done, he's done.
I would guess Joel's doc surmized that b/c the RIBA probably contributed heavily to, or may have even been the primary cause of the severe skin reaction, the risks of treating with either the triple or the double therapy were too great at this point. This is a weird thing about the tx: they can't always tell which drug is causing what sx.
I'm sure that discontinuation of all meds is the safest course of action, and would probably be recommended by the Incivek folks where there is a severe skin, and possibly an allergic reaction, followed by a course of steroids. (The Incivek reps discussed the protocol for dealing with severe skin reactions extensively at the FDA approval hearings which you can read on line if interested.)
I don't know that this necessarily precludes future tx with the pega/riba/vitralis, but this is a grey area, and you would have to find a doc who is willing to give it a whirl.
I agree with Alan except for one thing. I would not wait to consult another doc if you want to keep trying b/c the down time could make a difference. I don't know how long it takes those resistance mutant buggers to show up, but once they do your chances of successfully treating with a protease inhibitor (such as Victralis) are not at all good. Also, if you want to continue with just the pega/riba it is probably best to restart that sooner rather than later.
It is possible that this tx just aint gonna work, though. If that is the case then take good care of each other until the next tx comes along.
Man, you and hubby are getting hit hard every way you turn.
sandypsych said
Mar 20, 2012
We got a weird call from the liver doc today. My hubby is recovering from a severe allergic reaction to the Incivek that the liver doc mistook for congestive heart failure. But the primary recognized and treated it, and frankly we just chalked it up to a new med, and lack of experience. Today hubby got his 8 week test results, which his viral load was <43. this is lower than his 4 week result of 53, but not undetected.
Here is the wierd part....we assumed that he would start the Interferon/Ribaviron once the steriods were completed to clear (hopefully) the rest of the virus. However, the doc left a message (argh!) saying that because he is diabetic, and had such a severe allergic reaction, they were not starting any meds back, and we did not need to see them again. I think they 'broke up with us'.
Can anyone explain this? We may be missing something, and I want to understand as best as I can.
Any help is appreciated
Sandy (and hubby Joel)
krowdog said
Mar 19, 2012
Sandy and Joel,
Those are some sage words from Alan, and Isiscat (as usual).
If you do take that break, keep studying on this forum, and everywhere else you can. There are many new TX options opening up. One of our members, JIme, just started a trial with a new set of drugs. It is the "7977 Journal" thread on our forum.
Also, you should talk to your doctor to get a more detailed explanation of EXACTLY why he wants to stop all meds. There is often much more involved. For example, this from the article at HEP C Advocate "Adult Onset Diabetes Mellitus in Hepatitis C Virus Infection":
"In HCV infection, the use of interferon alfa, a well-known immune enhancer for the treatment of HCV infection, has been observed to be associated with the development of diabetes"
I'm not saying this has anything to do with your Doc's decision, just that there are *LOTS* of factors involved, and it would help to know which ones your doctor is considering (You mentioned the doc said "because he's diabetic, and because....)"
As much as I respect the medical community, this triple TX is a very new treatment, and for many Doctors, this is a just a "judgment call", not a science.
Good luck,
Brad
(Geno 1a, Incivek Triple TX, Undetectable since wk 4, now in wk 22 of 24)
-- Edited by krowdog on Tuesday 20th of March 2012 02:22:06 AM
-- Edited by krowdog on Tuesday 20th of March 2012 02:37:32 AM
news said
Mar 19, 2012
Sandy and Joel,
In my opinion this is the hardest news the doctor can bring, but there are many more than one Hep C patient in this forum that have heard the same words. It happens so often that when we calculate percent success numbers, a small number of unsuccessful treatments are chalked up to complications with treatment that made it impossible for the patient to continue. That being said, and owing to my propensity to encourage folks to do treatment, I would suggest you take a couple weeks off, and when everyone is strong again call some other doctors. Several of our members have been allowed to try a second form of treatment, or continue the ongoing one minus the offending drug. To be told "See ya!" is a bit harsh.
So I suggest you guys take a break, regroup, and if Joel really wants to go for it, find a doctor that will go along. I can't help but think there is one near you. And please consider all of the responses you get, because many in this forum are more grounded and more objective than I am, and might propose a less risky course of action.
Alan
-- Edited by news on Monday 19th of March 2012 11:28:23 PM
Just an update: We got a letter from the doc yesterday saying that he did not feel comfortable treating my husband any more 'due to his diabetes and severe allergic reaction". My husband called repeatedly, and finally spoke with him. They are referring us to U of M hospital (we have been there before, and actually love that program, but the distance is a bit of a pain). Unfortunately, we can't get in until mid July.
The good news is that he is undected but I'm concerned without the interferon/ribaviron it will not stay that way. We are seeing his primary doc on monday to see what he thinks we should do. He is off the steriods now, and feels the best he has in years, so that's been fun to see!
We have been spoiled by some exceptionally good and caring doctors, and this was our first experience with someone who either was too busy or not interested in this type of treatment. I will chalk it up as a lesson learned and just move forward from here.
Thanks to all for the support and encouragement. I hope to be on here more, and offer the same support to others.
Excellent points, Brad, and good advice.
After my tx was discontinued, I requested a copy of my medical records just to try to understand what had happened. As my doc was explaining things, particularly at the end when things were at their worst, I could barely make out what he was saying.
When you are in the middle of these things everything can just become a big blur. It takes a bit of time and distance to make sense of it all and get some perspective.
Hi Sandpsych: I try to be supportive of docs who make the effort to treat Hep C patients with the triple therapies because most docs just don't want the headaches. At least these ones are willing to try. But...Sheesh.....I would give most of them failing grades for their lack of patient education and support. I hope they get their acts together soon on this front!!
So, I guess this means this doc is through. Apparently, when he's done, he's done.
I would guess Joel's doc surmized that b/c the RIBA probably contributed heavily to, or may have even been the primary cause of the severe skin reaction, the risks of treating with either the triple or the double therapy were too great at this point. This is a weird thing about the tx: they can't always tell which drug is causing what sx.
I'm sure that discontinuation of all meds is the safest course of action, and would probably be recommended by the Incivek folks where there is a severe skin, and possibly an allergic reaction, followed by a course of steroids. (The Incivek reps discussed the protocol for dealing with severe skin reactions extensively at the FDA approval hearings which you can read on line if interested.)
I don't know that this necessarily precludes future tx with the pega/riba/vitralis, but this is a grey area, and you would have to find a doc who is willing to give it a whirl.
I agree with Alan except for one thing. I would not wait to consult another doc if you want to keep trying b/c the down time could make a difference. I don't know how long it takes those resistance mutant buggers to show up, but once they do your chances of successfully treating with a protease inhibitor (such as Victralis) are not at all good. Also, if you want to continue with just the pega/riba it is probably best to restart that sooner rather than later.
It is possible that this tx just aint gonna work, though. If that is the case then take good care of each other until the next tx comes along.
Man, you and hubby are getting hit hard every way you turn.
We got a weird call from the liver doc today. My hubby is recovering from a severe allergic reaction to the Incivek that the liver doc mistook for congestive heart failure. But the primary recognized and treated it, and frankly we just chalked it up to a new med, and lack of experience. Today hubby got his 8 week test results, which his viral load was <43. this is lower than his 4 week result of 53, but not undetected.
Here is the wierd part....we assumed that he would start the Interferon/Ribaviron once the steriods were completed to clear (hopefully) the rest of the virus. However, the doc left a message (argh!) saying that because he is diabetic, and had such a severe allergic reaction, they were not starting any meds back, and we did not need to see them again. I think they 'broke up with us'.
Can anyone explain this? We may be missing something, and I want to understand as best as I can.
Any help is appreciated
Sandy (and hubby Joel)
Sandy and Joel,
Those are some sage words from Alan, and Isiscat (as usual).
If you do take that break, keep studying on this forum, and everywhere else you can. There are many new TX options opening up. One of our members, JIme, just started a trial with a new set of drugs. It is the "7977 Journal" thread on our forum.
Also, you should talk to your doctor to get a more detailed explanation of EXACTLY why he wants to stop all meds. There is often much more involved. For example, this from the article at HEP C Advocate "Adult Onset Diabetes Mellitus in Hepatitis C Virus Infection":
"In HCV infection, the use of interferon alfa, a well-known immune enhancer for the treatment of HCV infection, has been observed to be associated with the development of diabetes"
I'm not saying this has anything to do with your Doc's decision, just that there are *LOTS* of factors involved, and it would help to know which ones your doctor is considering (You mentioned the doc said "because he's diabetic, and because....)"
As much as I respect the medical community, this triple TX is a very new treatment, and for many Doctors, this is a just a "judgment call", not a science.
Good luck,
Brad
(Geno 1a, Incivek Triple TX, Undetectable since wk 4, now in wk 22 of 24)
-- Edited by krowdog on Tuesday 20th of March 2012 02:22:06 AM
-- Edited by krowdog on Tuesday 20th of March 2012 02:37:32 AM
Sandy and Joel,
In my opinion this is the hardest news the doctor can bring, but there are many more than one Hep C patient in this forum that have heard the same words. It happens so often that when we calculate percent success numbers, a small number of unsuccessful treatments are chalked up to complications with treatment that made it impossible for the patient to continue. That being said, and owing to my propensity to encourage folks to do treatment, I would suggest you take a couple weeks off, and when everyone is strong again call some other doctors. Several of our members have been allowed to try a second form of treatment, or continue the ongoing one minus the offending drug. To be told "See ya!" is a bit harsh.
So I suggest you guys take a break, regroup, and if Joel really wants to go for it, find a doctor that will go along. I can't help but think there is one near you. And please consider all of the responses you get, because many in this forum are more grounded and more objective than I am, and might propose a less risky course of action.
Alan
-- Edited by news on Monday 19th of March 2012 11:28:23 PM