My doctor said there was a 25% chance of relapse quitting so early, but I am still clear!
Interferon with Ribavirin and the newly approved Telaprevir (Incivek) will be gallivanting through my body starting on Thursday July 21 2011. I will be following an alternative healing route determined by me and for me, through endless research and trial and hopefully no error. In searching for complimentary treatment options online, I couldn't find anything easy and quick to read and understand. I started gathering information from many many sources and am going to share it here with you. I will take you through my traditional treatment and let you know how my alternative treatments are working. or not. If you choose to use any information provided here, I take no responsibility for the outcome.
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I am still clear of the virus. I just did another blood test (for what would have been my 12 week status) and will have results next week. My doctor is optimistic.
I feel so great! I have my life back! It doesn’t take me all week to figure out how I will get to the market one block away and carry home some apple juice. I can walk to the farmers market and cook again and go back to my non-fat/non-dairy diet, which makes me feel so much healthier. I am convinced that once my liver healed, after that the drugs were just making me very sick and not doing much of anything else. We will have to wait and see. I will get a new blood test every month for 6 mths, per my doctor, to make sure the virus hasn’t returned.
The side effects I had AFTER quitting treatment were horrible. The fever got worse and was still constant for about 2 weeks after. My period had ended the week before I stopped. 4 days after I stopped, I felt awful and my legs were so swollen they looked like they might explode out of their own skin. I laid on the sofa all day, and at midnight I stood up and blood just started pouring out of me, with clots that were so large it looked like my liver and kidneys were being expelled through my vagina. I was horrified.
The next day I went to the GYN and she did biopsy and ultrasound, and we discovered that a fibroid I had had for years that had pretty consistently been 5 cm had grown to 9cm in the 10 weeks I was on interferon, which increases estrogen production, FYI. I have always been estrogen dominant, a great source of worry since my mother had breast cancer, and I am now on a nutritional plan to try and shrink that fibroid again. I am having another ultrasound in 2 weeks. This episode makes me feel even more correct in choosing to stop treatment. I think it was creating new disease and problems in my body that was so healthy prior to treatment.
I had no symptoms of Hep C at all before starting treatment, and my doctor said my liver disease was mild. When we discussed stopping treatment, he said he had another patient who only did 4 weeks on the regular intef/riba and she has been clear for 8 yrs now. So it is possible.
I received a comment from a Hep C support group called Daily Strength http://www.dailystrength.org/c/Hepatitis_C/forum/13021559-womans-tx-blog-very (FYI to them, I worked 3 days a week the whole time I was doing the treatment, and spent the other 4 days in bed). They talk about the theory that the reason we are kept on the treatment for so long is because the drug companies want the money. I agree this could be the case. I had a friend who died of breast/liver cancer this year and the day before she died she looked me in the eyes and said “The only regret I have is doing chemo.” I could never get that outta my head.
What a relief. I made the decision with my doctor to discontinue treatment. I believe my body has healed itself (I cleared virus at 4 weeks) and that at this point, it is just poisoning itself. I stopped taking the pills last night and this morning and I already feel like a human being again. I will get my blood work in a few days which hopefully will confirm that I am still hepC free. I hope it will show that my thyroid is still okay – I think I was causing it to have problems and hope to have “nipped them in the bud” (whatever that means).
Please doctor I can’t take it anymore. Can we consider me cured so I can stop? “Flu-like symptoms” don’t sound so bad until you have them ALL THE TIME. The constant low-grade fever is completely debilitating. Sometimes I rest in a cool tub of water and doze off; when I wake up I am surprised I didn’t drown. Then I go outside in the hot sun wearing a long sleeve jacket and a sun hat, looking and feeling like an old lady, you know, the little one’s in the orange coat from the 1950′s with a woolen beret. This is because I go from piping hot to subzero in a matter of moments, regardless of the temperature outside.
I am too tired to write anymore.
I forgot to write about my eighth shot. Probably because they all seem the same now. I jab myself, then cry because I feel alone and scared. Then I putter about waiting for the side effects to kick in. Eventually I go to bed. I spend Saturday sleeping. I wake up every 4-6 hours and do something, not much, then go back to bed. Before you know it its night time again and nothing significant has been achieved or occurred. I hope maybe Sunday I will be able to perform a task.
This Sunday I decided I had enough energy to sell things on eBay, something I have done many times before so I can do it by rote. It requires little consistent effort. Just taking some nice photos and writing a description. By Tuesday I was ready to post everything and hopefully something will sell. Next week I think I will sew things, like buttons and hems that have fallen. Other simple tasks that I can do without thinking, stop whenever I want and pick up at another time. This seems to help.
I have this low-grade fever constantly which wipes me out and my body feels dry and slightly itchy. I am very anemic, my blood work shows, so I started injections of something lethal called Procrit – I am trying not to really read all the significant warnings for this drug because they are much scarier than the normal warnings, including death as a side effect.
The fever is low grade but constant. I lay in bed with a cool rag around my neck. Sometimes I place it under my arms. I wake up every night around 4 am with a migraine. No energy desire wants. Just empty and bone tired.
Shot seven. This past week was awful. My skin feels like its being eaten by fire ants while electric shocks attack every nerve ending. I have tried scrubbing my skin raw with a bath brush, bathing in colloidal oatmeal, slathering myself in calamine lotion and aloe vera gel, but none of them are helping.I read online that possibly because my liver is unable to handle all the toxins in the treatment drugs, it is now releasing the toxins to the nerve endings in my skin.
On the advice of a doctor I took Magnesium and Calcium as she thought this would help with the beastly body aches, but it made me sleepy to the point of narcolepsy.
My vision is getting worse. I hallucinate, see things from the corners of my eyes, am ultra sensitive to light which causes colorful flashes of light as though magenta and neon green gels have been applied to my eyeballs, yet these gels are smudgy and filthy so I cannot see clearly through them. Reading and writing is torturous because I am struggling to see.
I really don’t want this to be a place just for complaining, which is hard because there doesn’t seem to be much else to do once you’re in the midst of this treatment.
Today I had a phone conference with my doctor in Los Angeles, an amazing woman who is trained as a Western MD but is also very knowledgeable about Eastern practices and vitamins and supplements and can make custom tinctures for your ailments.
For the agonizing body aches, she recommended Calcium 1000 mg, Magnesium 400 mg, Zinc 30 mg – all available in one capsule from Solgar – take 2 capsule 2x a day she said. I picked some up today and started and will let you know if this helps. The past week has been a joyless monotonous sleepathon for me. I have had several massages that help a bit, not deep tissue, as that seems to make the aches worse, just light Swedish massage and light touching and rubbing. I sleep all day so am up all night.
I am hungry and am trying to abate this because my weight gain is depressing me. My entire body tingles and itches. It feels like I’ve contracted sea lice; parasites creeping under my skin. I feel sad. because I am too tired to accomplish anything. Just getting motivated to put a dress on and go to the pharmacy can take me 3 hours.
Sixth shot. The body aches seem worse. I wake every few hours trapped in my trampled cadaver with a crushing migraine, yet I am determined to fight back. I take excedrin migraine which works great and enables me to wake up in a few hours with a useable brain.
Today is when Hurricane Irene is supposed to hit NYC. I forced myself out of bed and walked over towards the Hudson River with my video camera. The city seems deserted like any normal holiday weekend; just a few places had taped their windows. Chelsea Market was open and I got Amy’s Country White Batard and some of her out of this world Chocolate Cherry Rolls. The 14 St Apple store was tarped, taped and sandbagged and I got a nice shot of a potential customer pulling her hair out while screaming “NOooooooo!” at my camera. If I have the energy to edit it I’ll post it. But right now I am feeling very light-headed and nauseous and brittle. I am going to go lay down so I can enjoy the hurricane when it hits later on tonight.
I was looking forward to losing weight on this treatment but instead I am gaining, because the 24 hour Pegasys nurse told me to eat 20 grams of fat with each swallow of pills. This is to avoid intestinal cramping. It works by the way. But the fat and fatigue make me feel slothy.
This past week I decided to go back to my low fat diet and just make sure I EAT before I take the pills, but not necessarily 20 grams of fat. Sometimes I just eat some cherries or grapes and a bit of gouda. Or I will have a chocolate egg cream. A bit of dairy fat does help the pills go down.
Symptoms come and go. Body Aches. Burning Butt. Itchy Skin. I am either learning how to manage them better or I am just getting used to them. I have given in to the utter exhaustion. I let myself sleep, and when I cannot sleep, I get up, even if it is 3:30 am. I write or read or watch TV until I am tired enough to go back to bed.
Fifth shot. Virus cleared at 4 weeks. My body is too sick to fully enjoy the news. At least I know it will only be a six month treatment.
I am really struggling to see, and that is distressing. When I blink I experience abrupt flashes of psychedelic color; neon green and magenta. My eyeballs feel singed.
“You look and sound great!” people say, “I’d never know you were sick!” I wish I had some visible sign of illness or pain so people would be able to empathize. I think I’ll start wearing red eyeliner – that always makes you look terrible.
I used to be pretty okay for the three days before my next shot. Those are the three days I am working. Now I notice that by 4:00 in the afternoon, when I take my second dose of pills, that I slump to complete exhaustion and struggle to behave nicely towards others. I snap at people, saying exactly whats on my mind, which is never a good idea. I am cranky and irritable.
I have a new symptom that’s been developing slowly. I am having trouble seeing. I keep cleaning my glasses but I think its actually my eyes that are smudgy.
I have progressive lenses because I cannot see near or far. My prescription is just a few months old, but my vision has definitely changed since I started this treatment. I am having more trouble reading. I keep trying to lift or move my lenses to different heights to try and make stuff sharp, but everything just looks smeared and dirty. I hope this treatment is not permanently affecting my vision.
4:30 am. Wide awake. Didn’t take the Klonopin because I didn’t want to be groggy in the morning. Better to take it I think. Having been a drug addict, I am mindful about taking drugs, even prescribed medication. I wait until the last possible second; until I can’t stand it anymore. My doctors say I am too hard on myself. They prescribe the drugs to help me and I should allow myself to be helped. This translates across the rest of my life as well. I am so fiercely independent that it is near impossible to ask for assistance, let alone accept it, without feeling that I owe some big favor in return.
I returned the natural latex mattress topper which caused a prickly burning stinging sensation that I still can’t shake two days later. Instead I purchased a down top featherbed, described by many reviewers as “sleeping on a cloud.”
Fourth shot Friday. Saturday went for blood work that will show if I cleared the virus at 4 weeks. Will get results end of this coming week.
Past week was particularly difficult. I was very sad and struggling without the Valium, which is an integral part of my Bipolar meds. Without it I am relentlessly panic stricken. Finally got Klonopin on Friday and slept through the night. No night terrors. I also took 800 mg of Ibuprofen right after the shot, as suggested by my doctor, and this seemed to allay the agonizing body aches next day.
The doctor said it was possible I could be cured at 4 weeks and we could stop treatment. He said he had seen that happen with my genotype, plus my viral load is low to begin with so we should consider this if the side effects become too much to bear. I am going to continue as long as I can because I would hate to have gone this far only to have the virus return and have to start again from scratch.
It turns out my natural prep for the capsule endoscopy didn’t work; the doctor said there was too much foodstuff left in the intestines for him to see clearly. Next time, I think I would do the prescribed laxative, but still make my homemade gatorade to drink it down with.
Natural Gatorade: a liter of coconut water, which, like Gatorade, is loaded with potassium and minerals, mixed with a lemon/lime Trace Minerals Power Pack, loaded with electrolytes and vitamin C, more potassium and other vitamins.
I seem to have managed many of the side effects. Here’s how:
- Itchy Rash: Aveeno Calamine and Pramoxine HCI anti-itch cream + acupuncture + colloidal oatmeal bath + generic Zyrtec (ceterizine)
- Burning Itchy Butt: Prescription cream (as needed) + chlorine-free aloe baby wipes
- Body Aches + Chills: Prescription strength Ibuprofen 800 mg
- Cold Limbs + Numb Feet: Massage
- Nausea + Vomiting + Fatigue + Sadness: Acupuncture
- Anxiety + Insomnia: Prescription for Klonopin (clonazepam) .5 mg
- Anemia: B-Complex vitamins + Chlorophyll capsules
- Abdominal Cramps: Take Ribavirin near dinnertime instead of late at night.
Every night, instead of sleeping, I jerk grimace gasp and lurch like an executed inmate.
The Natural Latex mattress topper I thought would help is being returned. Much too firm and bouncy, plus it gave my skin a burning pins + needles effect that I tried to scrub off in the shower unsuccessfully. I must be allergic to latex. No rubber fetish stuff for me.
I finally got my doctor to agree to Klonopin (clonazepam) for the panic and sleeplessness. It is processed by a different area of the liver, so it does not produce toxicity in combination with the Telaprevir, like Valium (diazepam) does. And it works!! I would thank fucking god if I believed in him.
Acupuncture works great for the nausea and the sadness, but nothing seems to be working for the body aches. Body Aches. That sounds so minor. I will try and describe them for you.
Imagine being beaten and kicked to a pulp and left for dead. Every time you move, your neck grates against itself, sending deafening corkscrews of torment down your spine. Your muscles coil like rope, pulled taut to drag your lifeless lead-like carcass outta bed. Acidic poison arrows missile through your neck and torso, embittering every receptor.
I remember I have some prescription strength Ibuprofen (800 mg) leftover from a recent root canal, so I pop one and I’ll let you know how it works. I already asked the doctor if I can take Percodan. No such luck.