11 Days Off the Triple Therapy for Hepatitis C

He's been off the Hepatitis C Triple Therapy since October 14th.  I realize that it is not enough time for him to feel completely himself again, but I would think that each day he should be feeling better and better.  He's not.  He is still very itchy.  He tried Allegra, Benadryl, Claritin and Zyrtec.  They didn't work.  So our primary care physician prescribed Hydroxyzine HCL 25mg every 8 hours as needed and Triamcinolone 0.1% Cream FOU.  First couple of days it worked but it's not working any longer.  I don't think it is strong enough, and he has more rashes on him now than he did before.

In addition, he is still getting very cold.  You would think after 2 Procrit shots that would be dwindling away as well.  He is still getting very nauseous and has severe acid reflux as well.

I just hope that nothing is wrong.  When Steve saw the gastroenterologist on the 13th, his blood test results showed that he had a low RBC count, low platelet count, and a low white blood cell count.  The doctor said that Steve was anemic and he prescribed Procrit to increase Steve's RBC count.  So I asked the doctor if he was going to order Neupogen for the low white blood cell count.  His answer was that he wasn't concerned about Steve's white blood cell count.  But now I am thinking maybe he should have been. 

I believe that, when the doctor said my husband was anemic, he was referring to Aplastic Anemia.  This type of anemia has the potential to be fatal if not treated properly, so I just hope the doctor prescribed the best possible treatment. 

Steve is going for his first blood test since being off treatment tomorrow.  Once we get the results, we'll both feel better.  At the very least, we'll have a better idea of where he stands.

Disability Hearing Scheduled

We heard from Social Security. My husband’s hearing is set for December 4th. I am not hopeful. As I said before, it is my understanding that in order to qualify for disability under Hepatitis C, your symptoms have to be extreme, i.e. internal bleeding, severe encephalopathy or on the transplant list. They don’t take into account the extreme fatigue, lack of stamina, and depression resulting from hep c.

I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.

Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.

The Emotional Roller Coaster that is Hep C

Tonight was shot night- week 10.  I hope this week is better than last week.  Last week was truly rough.   Steve was feeling really awful.  Constantly dizzy and nauseous.

Early in the week he became very emotional.  He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say.  He even cried uncontrollably for hours.

By the end of the week, he was miserable and frustrated,  Everything was irritating him.  And I have to admit, it got to me.  I couldn't take it anymore, and we started arguing over the smallest things.  It was rediculous.  Luckily, we realized that the stress had gotten the best of us.  We talked it out, and this week is off to a much better start.

Week four - Viral load went from 545,900 to 21,800

We got the results back from his second blood test today. Everything looks good. No anemia. His thyroid was ok. His HCV viral load went from 545,900 (last test was taken two years ago) to 21,800.

Since he was only on treatment for four weeks when the test was taken, we are very hopeful and happy with the results! But we are trying to keep our cool. Because the first time he was on combo therapy (without the Alinia), he cleared and then relapsed.

I have to say the side effects are much worse this time than the first time he was on treatment. They are getting worse everyday. He gets very bad stomach aches everytime he eats now. He is still getting dizzy and is very short of breath. Yet he is determined to hang in there. He knows that no matter what he is going through today, it is the end result that matters the most!!

Best to you and yours,

Lisa

A Bit of Background Info

About 10 years ago, he started getting sick. Nothing serious. At first, it started with chronic sinus infections. Then he started having occasional stomach problems (which was diagnosed as diverticulosis). Soon after, he became consistently tired to the point of exhaustion.

He went to the doctor and was told it was stress. Then the stomach problems became worse. Each time he ate he became ill. So he went back to the doctor again, and again the doctor said it was stress. This time Steve asked the doctor for a referral to an allergist, because we thought he must have food allergies. But when he came back from the allergist, he didn't have any allergies.

At this point, I knew something was very wrong. My husband was at his wits end. He was exhausted, totally stressed out, and beginning to think he was crazy. So I told him to make an appointment with the doctor, and this time I went with him.

I am not a doctor, but it doesn't take a Phd. to figure out that there must be something wrong with his immune system. I asked the doctor to test him for Lupus. He didn't have Lupus. So we went back the next week, and I asked the doctor to test him for hepatitis. I knew that he had high liver enzymes. But the doctor insisted that the liver enzymes were elevated because Steve had high triglycerides. The doctor did not want to give him the test. After much back and forth, he finally decided to give him the test. The next week my husband got the call...