Aa
Post Interferon side effects
I have been off of interferon, ribaviren and a Schering Plough test drug called SCH503034 for 8 months. The virus is gone but I am more depressed than I remember and suffering from anemia. None of my doctors believe the anemia has anything to do with the treatment. I am working with a psychiatrist for meds for the depression, is there anything I can do for the anemia?
mb and DD have said it all...
Been some years "cured" and the horrors get worse and worse but all the Liver Gurus wanna hear is that I AM CURED! Cant be their treatment as that is long gone from my body. Poo, their nurses see it all and know it all and the Gurus couldnt give a flying poo!
I am lucky that I got two amazing local docs... they realize what the score is and how useless the Gurus are after youre "cured". One has a wife, nurse, who got C and treated same as me... five years on and she is still suffering neurological damage. This doc had two liver transplants from Hep B... All this knowledge and they know nothing can be done, there is little desire from the pharmas to research the issues cause, poo, they aint gonna make any money from curing something they created...
Just hoping ya pull thru and it all reverses itself asap.
Gonna call the FDA again tomorrow after the docs appt today with a new experiment... wish me luck all. And the same to you all.
Been some years "cured" and the horrors get worse and worse but all the Liver Gurus wanna hear is that I AM CURED! Cant be their treatment as that is long gone from my body. Poo, their nurses see it all and know it all and the Gurus couldnt give a flying poo!
I am lucky that I got two amazing local docs... they realize what the score is and how useless the Gurus are after youre "cured". One has a wife, nurse, who got C and treated same as me... five years on and she is still suffering neurological damage. This doc had two liver transplants from Hep B... All this knowledge and they know nothing can be done, there is little desire from the pharmas to research the issues cause, poo, they aint gonna make any money from curing something they created...
Just hoping ya pull thru and it all reverses itself asap.
Gonna call the FDA again tomorrow after the docs appt today with a new experiment... wish me luck all. And the same to you all.
bunk is all she wrote.........I've read numerous accounts of marrow problems including some that are caused by the procrit wearing the marrow out....no matter how you slice it chemotherapy is hard on all body systems and telling you that it's not related to your year+ of treatment is like telling someone who just went through a windshield that their headache isn't related to that. Good luck. Obviously very few docs have ever been on chemo, or gone with half their blood supply destroyed....so it's easier for them to be dismissive.
If your long term problem with anemia does not subside, you need to write to the FDA yourself. Many trial drugs are approved that shouldn't be because the docs refused to call things related....and then when 1000 people have died they go opps and pull the drug.
We all want good new drugs for this disease, but the serious sides are seriously underreported, and it's this that needs to stop. After all...if 50% of patients on a new drug need bone marrow transplants later..that's not a good thing or a good drug.
That's another reason why double dosing can be dangerous also. Folks put on double Riba had a 20% rate of kidney failure and far far more blood complications as well.
It would be ludicrous to think that the new PI's and such were going to be problem free.
mb
If your long term problem with anemia does not subside, you need to write to the FDA yourself. Many trial drugs are approved that shouldn't be because the docs refused to call things related....and then when 1000 people have died they go opps and pull the drug.
We all want good new drugs for this disease, but the serious sides are seriously underreported, and it's this that needs to stop. After all...if 50% of patients on a new drug need bone marrow transplants later..that's not a good thing or a good drug.
That's another reason why double dosing can be dangerous also. Folks put on double Riba had a 20% rate of kidney failure and far far more blood complications as well.
It would be ludicrous to think that the new PI's and such were going to be problem free.
mb
I am always amazed at how easily doctors seem to dismiss patients' post-tx problems as not having anything to do with the interferon/riba therapy. Now how would they know that? Most don't even bother to investigate any further, but just dismiss the problems as probably being due to something else. Now, the fact that many of us develop the exact same symptoms after therapy seems to have escaped the good doctors.
I can't tell you how many accounts I have read describing deep fatigue, depression, limb numbness, joint pains, memory problems, dizziness, autoimmune problems, etc. that have manifested in HCV patients immediately after ending their tx'es. You would think that doctors would notice at least a little bit of a pattern, in at least some groups of patients. Its not like they are isolated cases, or that there is nothing that might point to a probable cause....for goodness sakes the person has just done a brutal round of interferon therapy. Why WOULDN'T problems that spring up right after finishing tx have a high liklihood of being caused by the therapeutic agents...the drugs?
Maybe its because the pharmaceutical drug reps tell the doctors that it has no basis in the drug therapy....or maybe the doctors are just too preoccupied with managing tx cases to notice the patterns of post-tx fallout...but nonetheless, I think there should be much more dialogue among the medical experts about what all these post-tx symptoms are about, and how to manage, or eliminate them eventually. All we are looking for is some candor, some interest in the phenomenon (post-tx sx), and some impetus to find a way to deal with the symptoms.
Gee, the way many of them act, you would think that they are afraid someone is going to sue the drug companies. There is too much denial going on for me to attribute credibility to many of these doctors. Where is the spirit of inquisitiveness on their part...the quest for answers...the ability to objectively listen and observe??? I just don't get it.
DoubleDose
I can't tell you how many accounts I have read describing deep fatigue, depression, limb numbness, joint pains, memory problems, dizziness, autoimmune problems, etc. that have manifested in HCV patients immediately after ending their tx'es. You would think that doctors would notice at least a little bit of a pattern, in at least some groups of patients. Its not like they are isolated cases, or that there is nothing that might point to a probable cause....for goodness sakes the person has just done a brutal round of interferon therapy. Why WOULDN'T problems that spring up right after finishing tx have a high liklihood of being caused by the therapeutic agents...the drugs?
Maybe its because the pharmaceutical drug reps tell the doctors that it has no basis in the drug therapy....or maybe the doctors are just too preoccupied with managing tx cases to notice the patterns of post-tx fallout...but nonetheless, I think there should be much more dialogue among the medical experts about what all these post-tx symptoms are about, and how to manage, or eliminate them eventually. All we are looking for is some candor, some interest in the phenomenon (post-tx sx), and some impetus to find a way to deal with the symptoms.
Gee, the way many of them act, you would think that they are afraid someone is going to sue the drug companies. There is too much denial going on for me to attribute credibility to many of these doctors. Where is the spirit of inquisitiveness on their part...the quest for answers...the ability to objectively listen and observe??? I just don't get it.
DoubleDose
Go to a Hematologist. They specialize in diseases of the blood and blood-forming organs. They will work with you to get your blood back up to normal levels. Anemia causes fatigue, weakness, shortness of breath, loss of appetite and those thing can
contribute more to the depression.
Good Luck and please see a Hematologist.
Trinity
contribute more to the depression.
Good Luck and please see a Hematologist.
Trinity
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