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488823 tn?1218374167
much concerned and need help
I have not been around for a while after failing my last trial in Miami. My liver is all scared and I'm sure much worse then 2009-2010 but now My new doctor has put me on Pegasys proclick (180) the usual Rribavirin 1200 mg a day and the new Incivek 750 mg every 8 hrs. I'm close to 70 years old and I guess this will be my last chance as he put it, so I'm very concerned with the outcome and what to expect during this 3 month although I still might be on the old medicine beyond this 3 months. I'm going on my second week on thursday and I'm not feeling too good. My urine has changed color like I never seen it before and I feel bad all over. I'm also taking pills to get this Amonia out of my system and thats one indicator I'm much worse, because I never suffered with this before. Any in-put would be helpful, and if anybody was and is in the same situation would be helpful. Thanks
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488823 tn?1218374167
since I have poor hearing cant make heads or tails on this video but I'll guess more added news for us.

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection/Pages/Page%207/Subpage%205a.aspx
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Glad to see you're doing so well salvo.
Advocate1955
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488823 tn?1218374167
Well I was doing well but now I went to the VA and they find I'm in bad shape with lack of VIT D. Oh by the way all my blood work from my hep c doctor is almost the same and I'm anemic because of the med.Getting back to this VIT D problem I asked my doctor if its ok to take VIT D and she said its OK but I just found out I need to take 50000 units for 8 weeks and when looking it up, doesn't sound too good for the liver. Any input on this because I think I need to explain this to my hep doctor. Thanks
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3093770 tn?1389742726
I am taking one 50000 units vit D once per week

I never heard my GP saying anything aginst it. Liver specialist did not say anything against vit D either although we did not discucc the dose

As far as I know it is good. What makes you say that might not be ok? I mean if you gve me couple of references I could discuss them with the specialist
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488823 tn?1218374167
this came from mayo clinic---------http://www.mayoclinic.com/health/vitamin-d-toxicity/AN02008
What is vitamin D toxicity, and should I worry about it since I take supplements?
Answer
from Katherine Zeratsky, R.D., L.D.

Vitamin D toxicity, also called hypervitaminosis D, is a rare but potentially serious condition that occurs when you have excessive amounts of vitamin D in your body.

Vitamin D toxicity is usually caused by megadoses of vitamin D supplements — not by diet or sun exposure. That's because your body regulates the amount of vitamin D produced by sun exposure, and even fortified foods don't contain large amounts of vitamin D.

The main consequence of vitamin D toxicity is a buildup of calcium in your blood (hypercalcemia), which can cause symptoms such as poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Treatment includes the stopping of excessive vitamin D intake. Your doctor may also prescribe intravenous fluids and medications, such as corticosteroids or bisphosphonates.

Taking 50,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the recommended dietary allowance (RDA) for most adults of 600 IU of vitamin D a day. Doses higher than the RDA are sometimes used to treat medical problems such as vitamin D deficiency, but these are given only under the care of a doctor and only for a short time.

Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements---------
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1840891 tn?1431551393
Call your hep or gastro doctor and tell them the dosage that was recommended to you and make sure they approve of it before taking that much. I take 2,000 units per day (per my PCP) and my hepatologist is okay with that - but 50,000 is definitely in the megadose range and you really should make sure that dose is okay. Best wishes!
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1747881 tn?1511918860
Vitamin D Increases Sustained Response to Interferon-based Therapy for Hepatitis C, May Improve Liver Fibrosis

In the EASL study, S. Abu Mouch and colleagues from Israel assessed whether adding a vitamin D supplement to standard hepatitis C therapy using pegylated interferon plus ribavirin could improve rates of sustained virological response (SVR), or continued undetectable HCV viral load 24 weeks after completion of treatment.

Vitamin D is a potent immune modulator that has a direct effect on T-cells and antigen-presenting immune cells, and can directly or indirectly influence the differentiation and activity of CD4 T-cells, the researchers noted as background. They hypothesized that vitamin D has an important role in innate immune response against HCV. In addition, some studies have shown that vitamin D improves insulin sensitivity (a predictor of better treatment response) and inhibits HCV replication.

The investigators first measured vitamin D levels in a group of 157 chronic hepatitis C patients treated at their liver clinic in Israel, and found that fully 84% had low levels, and one-third had "severe deficiency."

They then performed a randomized study of 67 patients. About half were men, the average age was 48 years, and most were of Russian origin, with only a few being of Israeli or Arabic origin.

Participants were randomly assigned to receive 1.5 mcg/kg pegylated interferon alfa-2b (PegIntron) plus 1000-1200 mg/daily weight-adjusted ribavirin for 48 weeks, with or without 1000-4000 IU/day vitamin D3, enough to bring serum levels up to 32 ng/mL. By chance, patients in the vitamin D group were more difficult to treat than those in the control group, having a higher body mass index and larger percentages with high baseline viral load and advanced liver fibrosis.

Results

44% of participants receiving vitamin D achieved rapid virological response (undetectable HCV at week 4), compared with 18% in the control group (P < 0.0001).  
94% of participants in the vitamin D group achieved complete early virological response (undetectable HCV at week 12), compared with 48% in the control group (P < 0.0001).  
85% of patients in the vitamin D group achieved SVR, compared with 43% in the control group (P < 0.001).  
Adverse events were mostly mild and were typical of those associated with pegylated interferon/ribavirin (mainly flu-like symptoms).
No serious adverse events were reported.

These findings led the investigators to conclude that adding vitamin D supplements to pegylated interferon/ribavirin therapy for treatment-naive genotype 1 patients with chronic HCV infection significantly improves SVR rates.

They further suggested that vitamin D deficiency may contribute to the strong racial/ethnic disparity observed in responses to antiviral therapy for HCV. People of African descent -- and to a lesser extent Latinos -- do not respond as well as whites and Asians to interferon-based therapy.

People with darker skin produce less vitamin D when exposed to the sun, and are therefore more likely have low levels. The 2000-2004 National Health and Nutritional Examination Survey (NHANES), for example, found that U.S. non-Hispanic whites had average vitamin D levels nearly 10 nmol/L higher than those of Mexican-Americans, who in turn had average levels more than 10 nmol/L higher than non-Hispanic blacks.

Treatment Response and Fibrosis

In the second study, published in the April 2010 issue of Hepatology, S. Petta and colleagues from Italy looked at the association between vitamin D levels and histological and virological response to interferon-based therapy.

Adding to the mechanisms described by Abu Mouch's group, the study authors noted that vitamin D also can potentially interfere with inflammatory responses and fibrogenesis (formation of fibrous scar tissue).

This study included 197 patients with genotype 1 chronic hepatitis C and 49 healthy HCV negative control subjects matched according to age and sex. Most of the hepatitis C patients (167) were treatment with pegylated interferon plus ribavirin.

Levels of 25-hydroxyvitamin D were measured using high-pressure liquid chromatography. Tissue expression of cytochrome P450 25-hydroxylating liver enzymes (CYP27A1 and CYP2R1) were assessed in 34 hepatitis patients and 8 control subjects.

Results

Serum 25-hydroxyvitamin D levels were significantly lower on average in chronic hepatitis C patients compared with healthy control subjects (25.07 vs 43.06 mcg/L; P < 0.001).  
Lower vitamin D levels were independently associated with female sex and liver necro-inflammation.  
Levels of CYP27A1, but not CYP2R1, were directly related to vitamin D levels and inversely correlated with necro-inflammation.  
Independent predictors of severe liver fibrosis or cirrhosis (stage F3-F4) included:  
  
Liver necro-inflammation (OR 2.235);
Older age (OR 1.043);
High ferritin (a protein that stores iron) (OR 1.003);  
Low cholesterol (OR 0.981);
Low 25-hydroxyvitamin D (odds ratio [OR] 0.942).

Overall, 70 patients (41%) achieved SVR.  
In a multivariate analysis, factors independently associated with poor response, or failure to achieve SVR, included;
  
Lower 25-hydroxyvitamin D (OR 1.039);
Lower cholesterol (OR 1.009);
Liver steatosis (fatty liver) (OR, 0.971).


Based on these findings, the study authors concluded, "Genotype 1 chronic hepatitis C patients had low [25-hydroxyvitamin D] serum levels, possibly because of reduced CYP27A1 expression."

"Low vitamin D is linked to severe fibrosis and low SVR on interferon-based therapy," they added.

http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html


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1747881 tn?1511918860
Caution: Hepatitis C and Vitamin D Deficiency

In addition to dietary recommendations for liver disease, a significant portion of people with the Hepatitis C virus (HCV) take vitamins and herbs to support their liver. Despite this trend, American researchers have confirmed that living with chronic Hepatitis C is usually accompanied by a vitamin D deficiency. Worried about the consequences of a vitamin D deficiency, those with the virus may choose to supplement with this vitamin. However, vitamin D is toxic in large doses and taking too much of it could end up being more harmful than not having enough.

About Vitamin D
Vitamin D is a fat-soluble vitamin that helps the body absorb calcium and plays a crucial role in the growth and maintenance of strong, healthy bones. A lack of vitamin D causes calcium-depleted bone, which can weaken the bones and increase the risk of fractures resulting from osteoporosis. While vitamin D is probably best known for its role in bone development and maintenance, it’s also involved in the brain, immune and reproductive systems. A lack of vitamin D can cause osteomalacia in adults and rickets in children, both of which are unwelcome additions to the burden of chronic liver disease.

Vitamin D is found in food, but can also be produced in the body after exposure to ultraviolet rays from the sun. Some forms of vitamin D are relatively inactive, with a limited ability to function as a vitamin. The liver and kidney help convert vitamin D to its active hormone form. But for those with advanced liver disease from Hepatitis C, a deficiency can conceivably develop from the liver’s inability to convert vitamin D into its active form.

The Research
Presented in October 2008 at the 73rd Annual Scientific Meeting of the American College of Gastroenterology, researchers from the University of Tennessee in Memphis measured the vitamin D levels in people with chronic liver disease. Of those evaluated, 85 percent of the study participants had chronic Hepatitis C. After dividing every vitamin D deficiency into three categories (mild, moderate and severe), the investigators found the following:

92.4 percent of those with chronic liver disease had some degree of vitamin D deficiency
At least 33 percent of participants were severely deficient in vitamin D
Severe vitamin D deficiency was more common among those with cirrhosis
Lead researcher Dr. Satheesh P. Nair commented, “Since deficiency is common among these patients, Vitamin D replacement may hopefully prevent osteoporosis and other bone complications related to end stage liver disease.”

http://www.hepatitis-central.com/mt/archives/2008/10/hepatitis_c_and_11.html

I would talk to my liver doc about the recommended dosage
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3093770 tn?1389742726
Salvo, I would not worry about that

Toxicity and calcium build up will happen only when vit D is in excess

18 months ago I was under the lower limit with my vit D. I took for 24 weeks a one per week 50,000 units tablet and when I started tx I was having a healthy value, but only mid range really.

The idea is to monitor the vit D and check it maybe every 12 weeks, Also check your calcium. I would not be very concerned as you have a low value will take really long time to have it normal to start with



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488823 tn?1218374167
I'm on my third pill of vit. D 50000 units per pill, and I do feel better but really dont know if it was depleted from the med I'm taking. I just passed my 31 week and I'm still UND, just hope and pray I will be in my 48th which should be around July 11. I guess 4 to 6 weeks after that I should know if it came back or I beat this SOB. thanks
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1815939 tn?1377995399
Good to hear from you, Salvo. And really good to hear you are still UND. Looks like about 16 weeks to go. You are doing great. The longer you stay UND, the better, as you know. Here's wishing you UND for the rest of Tx and then SVR!
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I'm 54 years old and 12 weeks in to treatment at 8 wks it was UD and  all I can say is at my age its not good for me either be strong Salvo you can beat this thing my neighbor was your age when he went threw treatment for hep c GNO 1  8 years ago and is still virus free my Dr's have said vitamins can help and as I have always taken a good reg of vitamins I'm sure I'm ahead of some of that. Good Luck have faith and live long young man
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488823 tn?1218374167
Well I'm still UND and I have 9 more weeks to go and I feel like BLA, but no matter what, if good new or bad, at least I have to fell better then I do now.Wont know until AUG. some time to see if I beat this thing and I will keep you guys informed one way or another. Thanks for all the help.
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488823 tn?1218374167
I hope your doing OK and yes your not a great age too but it beats 68. As you get older, its hard and I've done this at least four times with all bad results but this time I feel a little different.I'm keeping my fingers crossed.  I hope it works for you.
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488823 tn?1218374167
I'm reading some of these old posts and I am grateful for all the help and knowledge. At this point because of reading some old posts, I was reduced to 135 on the shot for a long time now and just recently was reduced to 800 mg on the riba from a 1000, so That worries me a little that never went back to the required amount, but hey I'm still UND so I have to be happy.
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1815939 tn?1377995399
Good to here from you, Salvo. And really great to here you are still UND. 9 weeks to go, on the home stretch for sure now. That time will go fast, at least it did for me. You will feel better once you are off treatment.

I am so glad you are keeping us updated and we all want to here when you attain SVR. Here's wishing you SVR.  : )
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3093770 tn?1389742726
Hi Salvo

Going down to 800 at this stage is not aa huge problem so no need to worry
I think once UND is achieved and also once Incivek is finished, dose reduction is not something to worry about, especially if it is minimal

I do not think that right now this will change in any way your success. you have done really well so far and things will be good more than likely

Fingers crossed  :)))
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488823 tn?1218374167
My last blood work was about the same, not too much of anything, still UND and am hoping it will stay this way. Going on vacation tomorrow morning and four more shots to go. Last one on 7/11/13, what a day, to celebrate.Didn't  pick it by choice but I'll be happy when its over.See you soon.
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766573 tn?1365170066
It is so cool how you have kept this thread going throughout your treatment. You have come such a long way and now you are almost finished! Hang in there and keep us posted :)
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488823 tn?1218374167
This is july 15 2013, and I have been off med for 4 days, since 7/11/2013. The way I can explain it, I've been on a flight for a year and I've just landed. Why I've put it this way is because I'm really not feeling too good and hoping its just the long flight.----- For a few months before it ended, I have been getting these low grade temperatures, that even the girl that checks them asked me if I dont feel good. ( from 88 to 100.1), Now that I have completed this 48 weeks,I'm going for blood work on the 26 and the doctor Aug.1, so I guess I wont know too much for another 2 or 3 months. My Question, is why am I getting these low grade fevers? and if they are related,when are they going to stop ?
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Congrats on crossing the finish line, Bravo!
Now, I know that Interferon causes low grd fever, and that Interferon takes at least 3 days to clear our systems, so hopefully this sx will be gone in another couple days.
   Everybody is so different, for example, I would feel tired and achey after my shot, and would feel as if I had a low grd fever, but it didn't show up on the thermometer. We all have our own way of dealing with(and responding to) Interferon, as we manufacture it in our bodies, etc
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1815939 tn?1377995399
"Now, I know that Interferon causes low grd fever, and that Interferon takes at least 3 days to clear our systems, so hopefully this sx will be gone in another couple days. "
--------------------------------------
Interferon remains in the body for up to 6 months. Therefore any side effects from Interferon may not be gone for several months.
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1815939 tn?1377995399
Congratulations on finishing Tx! You had a difficult treatment and it is wonderful that you have finally completed it.

Treatment can take some time from which to recover. The drugs stay in our bodies for up to 6 months. They will be eliminated gradually and as they are eliminated the side effects from them should disappear as the days go by. Hopefully you will feel better and better each day. I know my side effects gradually disappeared, but it took months.

You mentioned going for blood work on the 26th. You should have a viral load now. You should not wait until the 26th. There is supposed to be an end of treatment viral load done right after you finish treatment, such as the day after you finish treatment. If you have not had an end of treatment viral load done yet, please have one done ASAP. This is very important. You need to know if you are UND at the end of treatment, which is now. So please get a viral load done ASAP, today or tomorrow. Call your doctor for the order if you have to, but please get one ASAP.

Hopefully you will be UND and remain that way. However, IF the virus does reappear, you will need to know if you were UND right at the end of treatment. It is the only way you will know if you had a breakthrough or if you have relapsed. Hopefully you will be UND at end of treatment and stay that way, but your doctor needs to follow protocol and get that end of treatment VL now just in case the virus reappears. IF it reappears, it COULD reappear as soon as 2 weeks after end of treatment and, without an end of treatment VL you would not know if you were UND at end of treatment or not, and therefore would not know if you had a breakthrough or a relapse. This is very important if you do need to treat again in the future.

Hopefully you will stay UND and that will all be mute, but one has to be prepared for anything.

As far as the low grade fever, it could be from the Interferon or it could be something else. I think your doctor is going to have to follow up on this and if the fever does not disappear, then the doctor should do a thorough work-up/exam with tests, to determine the cause so it can be treated.

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131114 tn?1380086790
i have not been around much- but i remember seeing your posts a ways back!
congrats on finishing a hard run!!!

i am praying for you and your wife that you are healed and that you two will have some good times ahead.

hopefully you will have SVR and your liver can begin to heal. the meds are strong but your body can recover after the virus is gone- you will have so much more to work with!

you are a warrior!
Jerialice
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488823 tn?1218374167
I'm sure the dates got screwed up because I was not coming back from vacation until the 21 but today as most said and POOH, I went for blood work and my doctor gave me no problem when I told them I wanted to get my lab done. I know I got a viral load and Ammonia check because I did have a problem with this before.---------- One problem I never mentioned is the EYE problem. I had them checked by a specialist about a month ago and after he checked inside and behind the eye, he said all look good.I told him my eyes have been bothering me for at least 4 months and he said to water them often.Well this is not doing too good but its better then nothing. The problem with my eyes is I keep getting styes, but before this med I never had a stye before but now it seems like I get every month and they hurt, even if I put drops every day. Is this from the MED too? Man I hope this goes away too because this is not good with hurting eyes all the time. Thanks ALL  
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1815939 tn?1377995399
The meds can cause dry eyesand so can Hepatitis C. I had dry eyes, felt like sand in them all of the time, before treatment. My eye doctor put me on Restasis and had me take the Restasis all through treatment. This worked. It is prescription, but it works much better than the regular eye drops, especially the stuff you get over the counter. So maybe mention Restasis to your eye doctor.

Did you tell your eye doctor you keep getting styes? Treatment could be causing you to get them more often. Hopefully now that you are off treatment they will stop reappearing. Still, if you have not told your eye doctor, I would tell him/her. You may need an antibiotic if you keep getting them.

http://www.webmd.com/eye-health/understanding-sty-treatment

Glad you had your lab work drawn. Let us know the results. Wishing you SVR.
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317787 tn?1473362051
Hi there! Congratulations on finishing tx,  I had very dry eyes all through therapy, like Pooh said it felt like sand in my eyes.  I used eye drop every day several times a day.
Finally a year and a half after tx my eyes are much improved.  I also had my eyes checked and was told they were fine.
I hope that yours gets better as time goes by.
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488823 tn?1218374167
Came back from the doctors today after lab, and found still UND but have a few things that still are off like, White and red count low, hemoglobin low,hematocrit low, platelet low,AN and AL low, but with all that, I do feel like its going to get better because I feel better. My urine is not dark and after I failed a few times, it got dark soon after but this time it seems better. Well I guess I know a lot more in 9 weeks for my next app. Thanks for listening
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901131 tn?1293748153
Third time's a charm this ones yours!!

Bob
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Congrats on remaining UND!  What a victory!
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1815939 tn?1377995399
Great that you are UND. Congratulations!

Hopefully as the days pass you will better and better. Please keep us informed. We do care.
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488823 tn?1218374167
Just want to thank all of you for thoughts and prayers, I'm grateful to have such caring people on this site.
Just got my results back since my last blood test and have not taken any medicine for 3 months, All my tests are in the BLUE and still UND and even platelets are up to 90 which is very high for me. I guess this MED worked and I'm happy as can be, and no more struggling with taken this medicine any more.I have been feeling much better although it still hurts but with scaring I guess it will. My doctor told me I should have a check again in 11 weeks, so  now that I'm relieved that should be no problem. I'll check in from time to time and at the moment I trying to move to another state so I'm all tide up. Again I thank you all for being so kind.
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Good to hear from you Salvo and glad you feeling better.  Excellent news on the 3 mo post tx UND!  Off to SVR land :)
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1815939 tn?1377995399
Wonderful news, Salvo. It is great that your lab is improving and that you are still UND. Being UND at 3 months post end of treatment gives you a 99.7% chance at SVR, which is exceptionally high. Best of luck. Wishing you SVR. (Keep us posted.)
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1840891 tn?1431551393
You've made my day with this news, I truly am so very happy for you!
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Congrats on remaining UND 3 months after treatment.  I think you are on the way to SVR!  Yay for you!
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488823 tn?1218374167
Sorry for not being on so much, but I just moved to Georgia, and dont have much time because of the move. I need to get checked around dec. 20, or so and wondering if anyone knows a doctor to finish up with my last test. I'm in the cumming area 30041, and I'm checking "north forsyth Hospital" for doctors but cant find any that treats HEP C. Thanks hopefully you can help
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There are gastroenterologists in Cumming, but if you want a hepatologist you may need to go to Atlanta.  Which do you prefer?
Advocate1955
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488823 tn?1218374167
I guess a hepatologist is what I'm looking for although I thought some one from the area could recommend someone near me.Atlanta is too far away, "maybe 75 miles" thank you
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Hi Salvo,
Maybe someone else from Georgia will answer your post.
I found the following:

Dr. Muhamad K. Obideen, Gastroenterologist
1100 Northside Forsyth Dr., Ste. 200
Cumming, Georgia
770-781-4010

Dr. Hetal A. Karsan, Hepatologist
1100 Northside Forsyth Dr., Ste. 200
Cumming, Georgia
770-781-4010

Advocate1955
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4896357 tn?1360674504
Congratulations! It sounds like you have it beat. Any doctor can order the VL test.
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488823 tn?1218374167
Thank you guys
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Good luck salvo
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488823 tn?1218374167
Hi you guys, This is an update for all of you and I'm happy to tell you after 6 months from my last dose, I guess I'm SVR because they told me everything looks good but I'm still trying to get copies of my tests, to see what the #'s are. I know it doesn't show on the Virus but really need to find out on platelets and other #'s so I can feel relieved. Now from what they tell me I need to keep getting checked on the scaring of my liver from time to time and of course I'll be 69 soon so who knows what will be. I just want to say thanks to all of you for forcing me to go the distance instead of the original plans. THANKS, THANKS, THANKS.
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1815939 tn?1377995399
This is truly fantastic news. In fact, this is the best news I have heard in a very long time. Congratulations!

You had so much against you and you persevered and made it through against all odds. That is truly commendable. And it paid off.

Enjoy your new Hep C free life.  : )

As far as checking, yes, since you have Cirrhosis, you need to be monitored by a Hepatologist every 6 months for Hepatocellular Carcinoma. I am sure you probably need other monitoring as well and hopefully some others who have Cirrhosis will chime in on monitoring when one has Cirrhosis.

Best of luck going forward.
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First congrats on gaining SVR. As for follow up testing because you do have cirrhosis besides being screened for HCC if you were DX with grade 1 varices one should also have And Upper GI done at times along with LFT blood tests............. Wishing you the best.

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Congrats Salvo!  Way to push through :)
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1840891 tn?1431551393
Super congratulations Salvo! I'm SO HAPPY for you. Welcome to the SVR club and best wishes for your good health to be resurrected - hopefully quickly, but do try to be patient, as it usually is a slow process to heal after what we've all been through. I'm just so glad you made it. Hugs!
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1747881 tn?1511918860
Big Congrats on attaining SVR

Wishing you all the best
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Congrats on attaining SVR!  I am so happy for you.  Check with your doctor, but as others have said, you should see your hepatologist about every 6 months for ultrasounds or CT scans to screen for liver cancer, and also for lab work to make sure that your liver is working well.  You should also stick with a liver friendly diet, no alcohol, and avoid medications that harm the liver. You have Cirrhosis, so take care of your Hep C free liver salvo.  Thanks for coming back and giving us this good news.  I think of you often.
Advocate1955
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