Doctors finally acknowledge Chemo brain fog. Perhpas they will for HepC as well.

[andiamo]

http://www.nytimes.com/2007/04/29/health/29chemo.html?hp

[DoubleDose]

Hey, I agree we should also focus on the damage that HCV causes, because it is substantial, and not limited to the liver by any means!  It is a subject that many doctors who should know better are often way off base on, in their attitudes.  I still hear doctors say HCV has few or no symptoms, and that many of the problems people complain about are either psychosomatic, or caused by other things.  If they read their own medical literature they would see clearly the vast array of problems that are frequently caused by HCV, including reactive arthritis, depression, cognitive and balance problems, gastric malfunction, possibly diabetes, and on and on.

BUT, that does not mean thet the interferon does not also have the capacity to cause other damage, and often quite severe damage.  It is documented that interferon can cause a host of autoimmune issues in many people, and can also affect the heart, the eyes, and the skin.  There are many issues that heve not yet been properly studied by the researchers having to do with metabolic changes brought about by the interferon.  Some studies are beginning to appear, such as the Type II Diabetes study presented at the liver conference, and the high correlation to TX.  Many, many treaters have been suffering from a NEW and DIFFERENT set of symptoms brought on during tx, and in many cases persisting long after ending therapy and attaining SVR.  We would like to see those issues addressed vigorously, since we are the ones suffering from the interferon-induced problems.  I now see several prominent specialists who are treating post-tx interferon manifestations, and who are trying to find solutions to these problems.  For those who develop interferon related sx, believe me they are real, and they are the result of taking a powerful immune system altering drug for long periods of time, sometimes at high doses.

Both issues clearly need more light, and more honesty.  

DoubleDose

[Kalio1]

You hit the nail on the head.

Often people blame therapy for damage that was caused their bodies by having HCV for many years. So in spite of treating and even with SVR, some still struggle with the damage that was caused by those years being HCV positive.


Thanks for making a very important (though often ignored) point.

[Cheesegrater]

I find too much talk and worry about the side effects of treatment and not enough talk about what HCV itself does to someone.

Physicians are usually quick enough to look for psychological, mental, physical peculiarities during treatment, and act to correct (by more meds or by altering treatment). When the patient is off treatment though, not much is done for complaints.  This disease causes joint pain, swelling, abdominal discomfort (liver, spleen and intestinal), diabetes, rashes, reduced mental capacity, difficulty concentrating, many and various body wide symptoms due to a confused and struggling immune system (the virus turns certain immune pathways off).
Yes, treatment is tough, but so is living everyday for decades with this horrible virus.

[scubadiver30]

Well, I  don't really know if IFN & Riba could be as strong as chemotherapy drugs. We do not loose all the hair and vomit all the time like cancer patients do....many of us treating are able to perform at work while most cancer patients have to take a LOA and radiotherapy along with just poison..
I agree brain fog and all the AI disorders we get afterwards are not nice, but I think we won't get acknowledged just yet as chemobrain sufferers just yet. Hep docs just want us with normal LFTs and clean PCRs...If we're a wreck after tx is not their problem...
For example, there is the strong possibility that my thyroid problem was caused by high concentration of bromine in the hot tub water (and staying for more than 3 hours, while the manufacturer said no more than 30 minutes at a time)...I was overdoing the jacuzzi because it was releiveing pain in joints but was inhaling bromine (whic is toxic to the liver) And I was blaming it solely on IFN..
Maybe we have too see all the medication we're taking alog with the combo
IMHO

Regards
Scuba

[DoubleDose]

This article also is very relevant to interferon therapy, and it will probably take a few more yoars to get the medical community to come to grips with the after-effects of interferon, as they have with cancer- chemo therapy.

Just think how long chemo has been in use!!!  And they are just NOW admitting it has long term damaging effects!  Out therapy is relatively new, and has not been closely studied for long term problems to this point.

I will bet that eventually it will be demonstrated that our tx has as much or even more harmful after-effects than chemo.  If many of you have been reading this and other forums very closely, you will already be aware of the multitude of problems being reported.  

I am over three years post-tx, and fully SVR, and have a variety of very difficult after-effects, including brain fog, lethargy, autoimmune problems, sun-sensitivity, metabolic syndrome, high blood pressure, ED, and neuritis-type symptoms.  Like they say in the article, the doctors need to not JUST CURE US, but to treat the consequences and fallout from the therapy.  

After all, what good is being cured of an illness, if it is going to turn you into a basket-case of nasty syndromes and symptoms?

Everyone should read this article closely.  Those who have finished a round of therapy, and have medical issues as a result, should make it very clear to their doctors.  Don't let them tell you how you should feel, you tell them what therapy caused, and how you feel!  And let them know you want answers, treatments, solutions to your problems!!!

DoubleDose

[ladybug52]

Yeah that's the thing, you hate to educate people because of the thought process that goes along with admission of hcv. Also, I wish I wouldn't have to explain sides to family, feel like a drama queen or hypochondriac blaming things on the tx.
Bug

[trolsgirl]

I hope one day Hep C won't have the stigma attached to it that it does and anyone on tx will get kindness & understanding.
It is frustrating when people think you are exaggerating your sx or think you are just having an "off" day.
Brain fog is a definite side effect as is the riba rage.  

God bless,
Sandra

[ladybug52]

thanks for posting the link. I didn't have a lot of brain cells to begin with, and I didn't tx long, but I feel like the tx increased my ADD. I have trouble spelling words that are very simple. I have to stare at them awhile and try to figure out what I've done wrong. I can't multi-task, I can't even single task. I'm sure this will get better, it helps to know I'm not just using tx as an excuse for my brain problems, still it's embarrassing. I can't tell people, "I'm ususally not this dense, but I've been txed for hep c" and expect them to understand.
Bug