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Avatar universal

When will new treatment be available?

Patient just diagnosed with Hep C Genotype 1. Has joint aches, body aches, extreme fatigue, insomnia, depression, feels like feet are swollen and painful. Doctor said these symptoms aren't from diagnosis and dismissed his complaints. He doesn't know what to believe. He is having ultrasound on liver next week. He is trying to decide if he should wait for the new treatment or do traditional. Is there any news about when the new treatment will be available? He is so discouraged and doesn't know what he is going to be able to manage. Is his likely to continue to feel badly? What can he do for symptoms?
43 Responses
1815939 tn?1377995399
Welcome to the forum.

"Has joint aches, body aches, extreme fatigue, insomnia, depression, feels like feet are swollen and painful. Doctor said these symptoms aren't from diagnosis and dismissed his complaints."
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His doctor is dead wrong. Hepatitis C can definitely cause multiple extrahepatic manifestations including all of the symptoms you mentioned. At least 75% of people with Hepatitis C have one or more extrahepatic manifestation. I am including a link that will list and describe many of the extrahepatic manifestation of Hepatitis C. In addition, the swelling in the feet can be caused from liver problems.

Maybe it would be worthwhile to print it out and give it to his doctor so his doctor will be a bit more enlightened.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

After the ultrasound, he should see a competent Gastroenterologist or Hepatologist (liver doctor) who is experienced and knowledgeable in treating Hepatitis C. He should also get tested for his Genotype (if he has not already been tested for it). The Genotype will determine the type of treatment he will receive.

He should also have a liver biopsy to determine what his liver fibrosis stage is. Once he knows what his liver fibrosis stage is, then he can better decide how urgent it is to treat. He appears to have a lot of extrahepatic manifestations of Hepatitis C so, if there are no medical reasons for him not to treat, treating sooner rather than later is most likely a good idea.


"He is trying to decide if he should wait for the new treatment or do traditional. Is there any news about when the new treatment will be available? "
-----------------------------------------

If he is Genotype 1, the current treatment is Interferon, Ribavirin, and a Protease Inhibitor.

If he is Genotype 2 or 3, the current treatment is Interferon and Ribavirin.

However, there are some new drugs that are awaiting FDA approval. They may be available early next year.

The new drugs for Genotype 1 will still include Interferon and Ribavirin, and they will also include Sofosbuvir.

The new treatments for Genotype 2 and 3 will include Ribavirin and Sofosbuvir.

In addition, there are other new drugs that are in the pipeline and may be available in the near future.


"Is his likely to continue to feel badly? What can he do for symptoms? "
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If the symptoms he is having are extrahepatic manifestions, then some of them, or possibly all of them, may disappear after he treats and gets rid of his Hepatitis C.

He needs to treat and get rid of the Hepatitis C in order to improve extrahepatic manifestation symptoms.

He should be seen by a psychiatrist who can evaluate and treat his depression.

In addition, it may be beneficial to be seen and evaluated by a Rheumatologist for his joint and body aches and his fatigue and feet pain. Hepatitis C can trigger autoimmune diseases and other diseases which can cause his symptoms.

The feet swelling can be caused by many things so he should have that evaluated as well.  

Best of luck for the future.
Avatar universal
A GP (general practitioner) may not be up on hep C.
What kind of doctor is this?

I would suggest a better doctor; a hepatologist or gastro; someone who has treated many patients, the the patient is seeing a GP.

I agree that many of the patient's reported symptoms could be or are likely be related to HCV.

And so I question if the patient is getting the best medical help possible.

Is the patient in the USA?  Are there other doctors available?
If the patient is in a different country the options for treatments will not be on the same timetable as for the USA.

willy
1840891 tn?1431551393
You've been given excellent advice above and I'm just chiming in to add another voice. The patient's symptoms are exactly what I got as extrahepatic manifestations of HCV. I went to the doctor 27 years ago with those symptoms and while running multiple tests to determine the cause, my hepatitis was discovered. Back then it was still called non-A/non-B hepatitis, there was no treatment available, and no one linked it with the symptoms that sent me to the doctor in the first place. It took about 10 years before they learned enough to link the symptoms, and it took until last year before a treatment actually worked for me and I could eliminate the virus. Now I'm free of the virus and I'm still hoping more of the extra hepatic symptoms will fade away with time.

Your friend needs to gather more information before he can determine the best pathway to wellness. He needs a specialist, not a general practitioner. He needs, at the very minimum, a gastroenterologist, but the best care would be with a hepatologist working at a large medical facility where different kinds of specialists can easily consult with one another. He needs a full set of blood tests to determine how well his liver is functioning and what genotype of the virus he has been infected by. He also needs the ultrasound results and he really should have a liver biopsy to determine exactly how much damage has already been done to his liver. This is ranked as stage 0 (no fibrosis, or scarring), 1, 2 or 3 are the various levels of worsening fibrosis, and stage 4 is considered cirrhosis. The number on this score will determine how urgent it is for him to treat right away or if he can afford to wait for the next drugs to be approved, and can also make a difference in how long he would need to take the drugs to maximize the cure rate. It's always best to study up on all these things and take a very active role in managing your own health, but its really critical if you are forced to settle for less-than-the-best in medical partners. Not all care is equal, and neither are all insurance policies. Medhelp is a good place to learn, and I also recommend http://hcvadvocate.org. Good luck!
Avatar universal
The PCM is his case manager but he is being seen also by a gastroentologist and liver specialist at the VA Hospital. His doctor is decidedly ignorant but hopefully the specialists will be more involved and effective. Thanks for taking the time to give such detailed, thoughtful answers. He has genotype 1 and an ultrasound scheduled for next week..
Avatar universal
........without knowing much about the patient

I'd repeat that those symptoms seem like classic HCV symptoms, and may also be symptoms of advanced damage.

This patient needs prompt and *perhaps* heightened care, not the symptoms being dismissed as unrelated...

If it was me.....I would want to look at a variety of issues; the issues with the feet could be diabetes, could be neuropathy, could be liver damage/staging related.  They sound like the general health needs a close look, not just HCV specific issues.

So far as HCV, they will possibly want to know if they are a 1a or 1b genotype.  If the VA will spring for an il-28b genetic marker test it may also help assess some types of viral response to various types of treatment therapies.  (for instance a diabetic il-28 T/T genetic marker w/ cirrhosis might have poor treatment success prospects)

I also would want to know the liver damage staging,
but I would be curious about many other allied issues since they all will play a part in the patients health, speed at which the damage may progress if untreated and the ability of the patient to withstand and succeed with the type of therapy which may be offered.

Without a lot more info I think they are flying in the dark......

.......and that doctor who thinks this is not related to HCV.....
well....... *perhaps* they are right, but many people at this forum might disagree.

Stay in touch and keep this patient in the loop.  It sound like they need some help. Good luck with the next better qualified HCV speclists w/ the VA.

willy

1480242 tn?1359204904
I am 3 months post treatment . I am undetectable
I was in a clinical trial.
I have cirrhosis and was a non responder with that living hell, IFN
I had NO side effects in the trial

Abbvie turquoise  2
Gilead and Abbvie
Market this year

Another thing. Find yourself a hepatolgist  ASAP

I'd suggest asking for an IL28 b to find out Geno
a fibrosure to check for liver damage

If not serious
WAIT

My clinical Doc says that both protocols will include IFN but since both are having  remarkable cure rates you will able to get them and simply not do the IFN

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