Guess it's time for an update.

Wow! I didn't realize it was in May that I last posted. So much has been going on. Well, I only have 4 more shots before treatment is over!!! YEAH!!!
It's been a long road and I just didn't really realize how long 48 weeks was until now.
Treatment has not been kind to me. I have lost 2/3's of my hair, 40 pounds, had Thrush, injection site reaction, severe rash, pneumonia twice, and I know there are a few other things that I just can't think of right now, it's called brain fog....LOL Then on top of all that I almost broke my toe the other night. I know that dosen't sound like a big deal but I had surgery on that foot 2 years ago and have 2 steel pins in it.
Other then all that lifes been pretty quiet. I get tired easy and most times don't leave the house.

FDA approves Boceprevir, the first new Hepatitis C drug in 20 years

This is very good news for people who have failed treatment more then once. So, if after treatment I don't remain cleared of HepC and I have the option of of trying again and using the new medication.
http://www.latimes.com/health/boostershots/la-heb-fda-boceprevir-hepatitis-c-05132011,0,7948226.story

New Update and some exciting news...........

Tomorrow I start week 15 of treatment for Hep C! I know I haven't posted since week 5 but honestly I spend alot of time sleeping now. The side effects of treatment haven't been pretty, nausea & vomiting, hair loss, rashes & itching, coughing & hacking, weight loss, fatigue, shortness of breath and just generally feeling crappy. BUT the doctor called last week with my 12 week lab test results, drum roll PLEASE............ I am UNDETECTABLE!!!! Which in real people terms means that I have NO detectable levels of the Hep C Virus in my system!!! While I am excited that I am responding to treatment I also have to be realistic. There is an 85% chance that it will return within 6 months of treatment ending (and I still have another 33 weeks of treatment) and a 20% chance that it will return within 5 years of treatment ending. Doctors says once you hit the 5 year mark with no reoccurance you are considered cured, but for those 5 years I have to be tested every 6 months to make sure and keep a baseline reading on my blood counts.

We were only hoping to lower the levels of the virus, as I have the worst and hardest form to treat Genotype 1A, but the doctor said because I am responding it gives my liver a break from having to do all the fighting. This doctor is really great and his staff are the best, no matter how many times I call or what the problems are they never put me through to voice mail or leave me on hold, as soon as I ask for the nurse and tell them my name they put me right through. If she dosen't have the answers then she always calls me back with the answer, most of the time the same day. If any of you need a good Gastro doctor email me and I will gladly give you his name, I won't be posting it here for obvious reasons.



I had a comment from a reader I'd like to repost here because of the nature of some of the post. I offered advise and I will repost that also, it contains a little more background on myself and the reasoning for the advise I gave.


Childress Report said...
I was in the air force and am 100% service connected. 50% of that is for migraines. I have been diagnosed w/figromyalgia, and in the last year for emphysema. There are spots on my lungs which the VA doesn't address. I'm in constant pain in my upper right back from "whatever it is" that is on my lung. I am given 5/500 lortab and some flexeril, which don't help. And, there is so much acetamenaphine in the Lordtabs, that I hate to take it anyway. I have a friend (here in OK) that has stage 3 breast cancer and is taking chemo. She just told me today that her dr. gave her a prescription for marinol (or equivalent). I don't know where she will get it filled, but it apparently is available. I can't smoke MJ anymore, because if I do, I will be taken off the meds that I'm on now for depression, pain, anxiety et al. I can barely get around anymore. I don't know what to do. But I do thank the author for her input and at least trying to get something done. Why do we have to suffer and be treated like criminals??

March 3, 2011 12:28 PM
Denise Stahl said...
I know what you mean about the VA not addressing issues. My husband is a 100% Disabled Vietnam Veteran he also recieved a Purple Heart USAF 69-71 and has the same problem with the VA, instead of addressing that his leg keeps going numb and then he falls, they do 149 x'rays in an hour and a half of his back and spine, you would think 2 or 3 would be enough.
As far as the Lortabs, I can't take those because of liver and stomach conditions, ask your doctor if changing to something like vicoprofen would be better, they don't cause the same stomach upset that Lortabs do. I suffer from severe muscle spasms, Flexeril is like taking a sugar pill and causes leg twitching and jumping when taken in higher doses. Skelaxin is used for treatment of figromyalgia and may be a better option, personally I take Soma 350mg, 3 times a day and it does help. I guess I should tell you that I worked in the medical field for over 10 years before becoming disabled. I worked for a Physiatrist (Physical Medicine and Rehabilitation MD) who treated patients with figromyalgia. I worked for a large Eye Surgery Center (3 Ophthalmologist, 2 Optometrists and a Retina Specialist) and the last place I worked was a Cancer Center here in Oklahoma.
As far as Marinol, some people may not have a problem with it but some people because of health issues can not use it. I can not use it because I had a heart attack 2 years ago, it can also cause seizures. The point of making marijuana legal is, if you can get it (THC) and use it (THC) in it's natural form (marijuana) why should we have to use a chemical form (Marinol) that have far diffrent and in some cases much worse side effects.
Does the VA or whoever you health provider is drug test you? Unless they are drug testing you or you tell them (the doctors) that you are self medicating with marijuana they really wouldn't know. The safest thing is, until the law is changed NEVER tell your health care provider you self medicate with marijuana. I know how that sounds and as much as I firmly believe that you "should" be able to be open and honest with your doctor you just can't be because the way the laws are written. You tell a doctor that you self medicate with marijuana because it's the one thing that gives you relief over all their chemicals and any medication you are on is going to be stopped and you will be branded a druggie.

Happy New Year!!!

I wish you all a safe and happy New Year!!

Well, I will be doing my 5th treatment this Tuesday. I have to say that it is nothing like the first week of treatment. Frankly I haven't posted because I haven't had the energy. I sleep alot now, I'm either nauseated or have no appetite and have lost 13 pounds since December 7th. The headaches are horrendous, for the first 4 days after taking the injection all I want to do is either throw up or sleep. The headaches never go away the pain just decreases. The other night the whole inside of my mouth felt like it was on fire and to top it all off my hair looks like crap and is slowly falling out. I'm also having trouble concentrating and remembering things. I have sticky notes everywhere.......lol
On the up side, I have a wonderful husband who takes very good care of me.

One week and counting..........

Ok, so my last post was October 1st and I talked about starting treatment. As you can see from the title of this post I just started treatment on Dec. 7th. I got my rx from the doctor, call my insurance to see how much the treatment meds were going to cost with my co pay and was told they were going to be $4.12 each a month and that it does not quilify for their Meds By Mail Program. So, I ran down to Walgreens, turned in my rx and waited the 4 days it was going to take them to order it and get it in. I got the call that my meds were in and went to pick them up. I'm standing at the counter, the girl rings them up and says, "Your total is $884.00" I asked her to check to make sure they used my rx coverage and they had. Needless to say I couldn't get it. I called the insurance company back and was told that the woman who I spoke with did not give me the correct information, well no shit! Then I went round and round with them about why their agent gave me totally false information, it only got worse, to the point where I told their agent supervisor exactly what I thought of their incompetence and hung up on them. Here's where the journey through Medicare, CHAMPVA, Non-Profit Foundations and finally the Veteran's Affairs Administration began.

I am on Social Security Disability due to my health conditions. I have Medicare and because my husband is a 100% disabled Vietnam veteran I also have CHAMPVA. CHAMPVA is for survivors and dependents of dead or disabled veterans. They pay the portion of your bill that Medicare does not cover (20%) and you pay 25% of your rx's. Now 25% of rx's dosen't sound like much unless your rx happens to cost over $2000 a month. My co-pay for one year of treatment was going to be $10,608 which is about $2000 more per year then I get in disability payments. So, if I'm only getting $8000 a year in disability, how am I supposed to pay $10,608 for treatment?

Fortunately for me I worked in the medical field and know that there are other options for people with limited income. I started by contacting the makers of the medications my doctor wanted me to use. From there I was refered to a non profit foundation that helps cover the cost of medication if you qualify. I qualified, which was great, I thought. I got the letter from them telling me that I qualified for a grant to help pay the cost of my meds, they were going to give me $500 dollars for treatment. I have to admit that by this point I was a mess and I actually started to cry. That's like telling someone who's house is on fire your going to spit on it to put it out. Everything kept leading back to the same question everyone had asked me, "Do you have Medicare Part D drug coverage?" So, I actually started looking into the diffrent plans and costs compared to my CHAMPVA which has no premiums. Then I found out that if I get Medicare Part D, I lose my CHAMPVA coverage completely. By this time over a month has passed and still no treatment and no answers. I waded through CHAMPVA, Medicare, Medicare Part D, Drug Companies, Non Profit Foundations and finally all the way back to CHAMPVA and Veteran Affairs.

You see, I got a magazine in the mail called "Your Health" from CHAMPVA and inside this magazine was an article about the Meds By Mail program, their requirements for partisipation and the forms to use. So, I read it all very carefully, called the regional pharmacy that handles the area I live in to make sure they had the meds I require. I DID NOT ask them if I qualified to recieve my meds through this program since when I called CHAMPVA the first time they told me I did not. I figured if they were wrong about everything else they were probably wrong about this too.
I got a new rx from my doctor and mailed it along with the forms, my CHAMPVA insurance info and copy of my military ID on Nov. 16, 2010. I recieved my first shipment of meds on December 6th from the Veterans Affairs Administration Pharmacy at NO COST! No thanks to all the "help" I recieved from CHAMPVA!

I started treatment Dec. 7th, so far I've had some side effects but nothing too bad, but then again I just started.....lol I will keep you all posted on how I'm doing. Thank you all so much for your support and prayers.

If you or someone you know is having trouble paying for their meds and you want to ask me a question, just ask and I'll help as much as I can.

Starting Treatment Next Week

Well, I got my rx from the doctor for my treatment meds the other day. Boy was I way off on how many pills I would have to take per day as part of the treatment. I will have to take 1 shot per week and 5 pills every day. That's 150 pills per month!!! That is not including the 150 pills a month I take for other medical problems. So, now I'm up to 300 pills a month.
Time for some background on the new medications I will be taking and their side effects.

Pegasys Drug Description


PEGASYS
(peginterferon alfa-2a)

Alpha interferons, including PEGASYS (peginterferon alfa-2a), may cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Therapy should be withdrawn in patients with persistently severe or worsening signs or symptoms of these conditions. In many, but not all cases, these disorders resolve after stopping PEGASYS therapy (see WARNINGS and ADVERSE REACTIONS).

Use with Ribavirin. Ribavirin, including COPEGUS , may cause birth defects and/or death of the fetus. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with ribavirin therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen (see COPEGUS Package Insert for additional information and other WARNINGS).

Pegasys Side Effects & Drug Interactions


SIDE EFFECTS
PEGASYS alone or in combination with COPEGUS causes a broad variety of serious adverse reactions (see Boxed Warning and WARNINGS). The most common life-threatening or fatal events induced or aggravated by PEGASYS and COPEGUS were depression, suicide, relapse of drug abuse/overdose, and bacterial infections, each occurring at a frequency of < 1%. Hepatic decompensation occurred in 2% (10/574) of CHC/HIV patients (see WARNINGS: Hepatic Failure and Hepatitis Exacerbations).

In all hepatitis C studies, one or more serious adverse reactions occurred in 10% of CHC monoinfected patients and in 19% of CHC/HIV patients receiving PEGASYS alone or in combination with COPEGUS. The most common serious adverse event (3% in CHC and 5% in CHC/HIV) was bacterial infection (e.g., sepsis, osteomyelitis, endocarditis, pyelonephritis, pneumonia). Other SAEs occurred at a frequency of < 1% and included: suicide, suicidal ideation, psychosis, aggression, anxiety, drug abuse and drug overdose, angina, hepatic dysfunction, fatty liver, cholangitis, arrhythmia, diabetes mellitus, autoimmune phenomena (e.g., hyperthyroidism, hypothyroidism, sarcoidosis, systemic lupus erythematosus, rheumatoid arthritis), peripheral neuropathy, aplastic anemia, peptic ulcer, gastrointestinal bleeding, pancreatitis, colitis, corneal ulcer, pulmonary embolism, coma, myositis, cerebral hemorrhage, thrombotic thrombocytopenic purpura, psychotic disorder, and hallucination.

Nearly all patients in clinical trials experienced one or more adverse events. For hepatitis C patients, the most commonly reported adverse reactions were psychiatric reactions, including depression, insomnia, irritability, anxiety, and flu-like symptoms such as fatigue, pyrexia, myalgia, headache, and rigors. Other common reactions were anorexia, nausea and vomiting, diarrhea, arthralgias, injection site reactions, alopecia, and pruritus.

I will be doing treatment for 48 week, if I can. Wish me luck and keep me in your prayers.

Got another one!

I honestly don't understand why Cliff Aldridge's champaign keeps sending me political ads. I wouldn't vote for him if he was the last politician left on earth. I am a registered Democrat and have seriously been thinking about changing to the Tea Party! I think the rest of the week I am going to spend contacting Oklahoma Tea Party members and see what their view on medical Marijuana is. It's worth a shot and they can't do anything worse to me then Cliff Aldridge did.
I also wanted to take this time to let you all know that I will be starting treatment for the Hep C next week. It's 1 shot a week and 2 pills a day for 48 weeks. My viral load (how much virus is in the blood) is very high and they are hopeing that treatment will slow the progression of the desease or maybe put it into remission. That means 60 more pills per month added to the 150 a month I already take for the diffrent health problems I have. I was also diagnosed with scoliosis (abnormal curving of the spine) just last week, which explains the lower back and hip pain.
Maybe if marijuana was legal I could get rid of about 120 of the pills per month.