As I recall, it was on 19 June 2012, during one of my routine visits to my Hep doctor, I received good news. My application for the medication subsidy has been approved! I was so excited to received my pink card sent to the clinic by the social worker personally. My Hep doctor was happy to start giving me this therapy too as he had been harassed by me for so long for not letting me start. Took my FBC (Full Blood Count), thyroid and baseline viral load PCR test before starting to monitor treatment progress. After leaving his room, went to collect my very first dose of Pegylated Interferon Alpha 2a in 180 mcg and Ribavirin from the pharmacy and went back to the treatment room to do the injection with the nurse' supervision.
Autoimmune disease is a condition in which the immune system attacks the body’s normal substances and tissue – is an umbrella term for up to 100 illnesses. The conditions range from the familiar to the less well known. Among them are Rheumatoid Arthritis, SLE (lupus), Sjogren’s Syndrome (marked by dryness of tissue, including mouth and eyes) and Hashimoto’s Thyroiditis, a rare disorder that is often mistaken for an underactive thyroid.
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Some of my symptoms mimic AI and fatigue is probably the most common symptom of autoimmune disease, indicating, among other conditions, chronic fatigue syndrome or rheumatoid arthritis.. My doctors wanted to to rule them out with a load of blood tests so that I can start treatment without any worry of complications. The bill came out huge though. I walked out of the hospital happy and satisfied. Then back to the office and continued my "mission impossible". Had some packing to do for our office relocation, despite the tendon and fibro issues as of late. Had a quick lunch at the hospital before I took my first two Ribavirin pills.
Since Interferon was first introduced as a therapy for chronic non-A, non-B hepatitis in 1986, almost all patients using interferon and its combinations (i.e. Ribavirin) have experienced side effects, some life threatening. Many have had to stop treatment altogether since these side effects were too overwhelming and too debilitating for them to continue treatment.
All “drugs” have side effects. Since the genetic make-up of each individual is different, people will react in different ways to the same administered drugs and their combinations. The literature on interferon therapy lists the following side-effects of interferon: flu-like symptoms (fever, chills, muscle and joint pain, headache), hair loss, tiredness, low blood count, trouble with concentration and thinking, moodiness and depression. For some people, the effects are even more life threatening. They include: blood infection, thyroid disease, suicidal thoughts, seizures, acute heart, kidney, eye and lung problems, and in some instances, deaths due to liver failure or blood infections.
A most important side effect of interferon therapy is the actual worsening of the liver disease it is designed to treat. In approximately 40 out of 100 persons treated with interferon, the dosage has had to be reduced because of the severity of side effects, and treatment stopped completely in about 15 out of 100 persons.
These side effects are experienced with only using monotherapy, or interferon by itself. Now, add to this the combination of interferon and Ribavirin and the side effects multiply. In addition to the side effects due to interferon alone, Ribavirin can cause: severe anemia (low red blood cell count) and can result in kidney failure. Anemia can be life threatening for people with certain types of heart or blood vessel disease. Ribavirin has also been known to cause serious birth defects in pregnant women.
Prior starting this therapy, I worked hard to put on as much weight as I could, upped 2kg to 49.5 kg, eat well, rested as much as possible and avoided anything stressful.
But the most important thing is to be positive and a great attitude which is as great a weapon as the medicine and when combined together, will never fail us. What was expected turned out different: aches not only on muscles but also tendons, ligaments, bones, joints, nerves. My energy level was so low just doing nothing. I was more tired than prior treatment and even with the medication for fibro, every symptom was amplified. Dryness ended up as dehydration and blended well with added itchiness. These are all the common side effects that could happened to anyone on treatment.
On that very first night, as I lay in bed, travelling into the unknown, was waiting for the some cool sides to kick in. I could feel the weird toxic chemical cocktail of the Interferon travelling and working its way through my muscles, sharp piercing pains from the neck, shoulders, back and limbs, like a thousand daggers stabbing me. My neck and shoulders stiffened that I could hardly move I thought I'd became a rock! My body burning like a furnace. It was like UFO landed! The sensations were so strange nobody would ever understand if they have not gone through this treatment.
All “drugs” have side effects. Since the genetic make-up of each individual is different, people will react in different ways to the same administered drugs and their combinations. The literature on interferon therapy lists the following side-effects of interferon: flu-like symptoms (fever, chills, muscle and joint pain, headache), hair loss, tiredness, low blood count, trouble with concentration and thinking, moodiness and depression. For some people, the effects are even more life threatening. They include: blood infection, thyroid disease, suicidal thoughts, seizures, acute heart, kidney, eye and lung problems, and in some instances, deaths due to liver failure or blood infections.
A most important side effect of interferon therapy is the actual worsening of the liver disease it is designed to treat. In approximately 40 out of 100 persons treated with interferon, the dosage has had to be reduced because of the severity of side effects, and treatment stopped completely in about 15 out of 100 persons.
These side effects are experienced with only using monotherapy, or interferon by itself. Now, add to this the combination of interferon and Ribavirin and the side effects multiply. In addition to the side effects due to interferon alone, Ribavirin can cause: severe anemia (low red blood cell count) and can result in kidney failure. Anemia can be life threatening for people with certain types of heart or blood vessel disease. Ribavirin has also been known to cause serious birth defects in pregnant women.
Prior starting this therapy, I worked hard to put on as much weight as I could, upped 2kg to 49.5 kg, eat well, rested as much as possible and avoided anything stressful.
But the most important thing is to be positive and a great attitude which is as great a weapon as the medicine and when combined together, will never fail us. What was expected turned out different: aches not only on muscles but also tendons, ligaments, bones, joints, nerves. My energy level was so low just doing nothing. I was more tired than prior treatment and even with the medication for fibro, every symptom was amplified. Dryness ended up as dehydration and blended well with added itchiness. These are all the common side effects that could happened to anyone on treatment.
On that very first night, as I lay in bed, travelling into the unknown, was waiting for the some cool sides to kick in. I could feel the weird toxic chemical cocktail of the Interferon travelling and working its way through my muscles, sharp piercing pains from the neck, shoulders, back and limbs, like a thousand daggers stabbing me. My neck and shoulders stiffened that I could hardly move I thought I'd became a rock! My body burning like a furnace. It was like UFO landed! The sensations were so strange nobody would ever understand if they have not gone through this treatment.
Well, "aches and pains" are subjective, it could just be widespread pain and muscle aches people get after working out at the gym or physical stress which can be alleviated with rest. We all experienced different kinds of pain in life. But pain cannot be compared because it is the sufferer who knows exactly how it feels. So was I prepared? This was only the beginning. This short poem was written on that first night:
Today i begin my roller-coaster ride
"Out you go", sneaky little devils inside
A little more pain is all i feel
A little more faith is all i need
Give me strength, i ask my Lord
A little more pain is all i feel
A little more faith is all i need
Give me strength, i ask my Lord
Give me hope to carry on
To fight the fight, this war begins
Never give up, never give in
I shall not fear by the grace of God
Til the end of it, it is worth doing for
To fight the fight, this war begins
Never give up, never give in
I shall not fear by the grace of God
Til the end of it, it is worth doing for
I'll sing my hymn
Hallelujah, Praise the Lord!
Hallelujah, Praise the Lord!
I woke up the following day as usual. A brand new day, the first day after my first shot. Surprisingly nothing new, no side effects yet, no new pain besides the same frustrating fibro issues. But when I brush my teeth and tongue, it bled. My tongue has become sore and rough overnight. When I had "char siew" (honey roasted pork - a Cantonese delicacy) rice for lunch, I thought I put a blanch of salt and sugar into my mouth! From then on everything that goes into my mouth tasted yikes! either too sweet, too salty or too spicy. I lost the appetite to eat and developed a phobia whenever I see food, for fear of putting salt or sugar on my tongue again. Eating became a chore and a bore. I lost 1 kg at the end of the first week.
What I'd learned from the Hep community that side effects usually begin about 24 to 48 hours after the shot. The feverish feeling usually start a few hours after the shot when they would take a Tylenol and sleep through it. But I've never needed it due to the allergy I've developed recently. Besides having the aches and pains, there were no sign of fever until about 3 pm, I sensed some strange taste on my mouth and felt the heat overwhelmed my whole body.
I was feeling quite euphoric, did my packing and met up with the contractors in charge of the renovation for our new office. I presumed it's going to be a breeze for the next 23 weeks of therapy. The aches and pains seemed to me to be moderate and nothing compared to my fibro. It's not too bad after all ... an easy one, as I thought. On the third day, I had a low grade fever and started sweating profusely at night. I have only to endure and bear with the high temperature using self-care tips - ice packs, cold shower etc. It all went well as I wished and fever subsided after few hours. My wish always .. fever is often traded off with pain.
I was feeling quite euphoric, did my packing and met up with the contractors in charge of the renovation for our new office. I presumed it's going to be a breeze for the next 23 weeks of therapy. The aches and pains seemed to me to be moderate and nothing compared to my fibro. It's not too bad after all ... an easy one, as I thought. On the third day, I had a low grade fever and started sweating profusely at night. I have only to endure and bear with the high temperature using self-care tips - ice packs, cold shower etc. It all went well as I wished and fever subsided after few hours. My wish always .. fever is often traded off with pain.
Four days later was our relocation day. Despite the heated body and dehydration, I maintained my composure and discharged my duties being the 'head of move". I went through this ordeal with the help of endless painkillers. My back hurt so bad after too much bending and lifting of the carton boxes because nobody else was in sight to help. Unpacking, arranging and organizing the new office to be ready for the "kings and princes" to walk the red carpet and "cross the pail of fire" (Chinese superstition to rid off bad omen and welcome a new beginning).
The next few days my mouth and eyes were so sore and dry I could drink a gallon of water, live under the sea and finish a bottle of eye drops. By the end of the week, the Interferon truck hit me! Much harder than the usual Mack truck (USA). Guess I did too much and paid for it.
So that's the end of the first week, the beginning of my roller-coaster ride with Hepatitis C therapy. Started my frequent visits to the hospital for routine blood draw, FBC (Full Blood Count) to be done weekly for the first month. On the 4th week my WBC (White Blood Cells) took a plunge but nothing alarming at all but yet my doctor became exceptionally caring that he reduced my Interferon alpha 2a from 180 mcg to 135 mcg. He even contemplated stopping treatment if it doesn't rise after the dose reduction. The time came for the second shot and he still wanted my injection to be supervised. So much time has been wasted at the hospital taken off my time-off from work. All these unnecessary processes, waiting time and service fees could be saved and instead be more cost-effective if it can be done in the comfort of my own home.
Being on this therapy, I had lots of waiting. In order to get my precious Pegasys/Copegus, I need to wait for the doctors prescription, wait at the pharmacy, wait for the nurse to watch me inject, wait for taxi, wait for blood results and wait for the next appointment.
At the end of the first week, I felt I needed an outlet to let go my frustrations from the fear and stigma just because nobody understands. I noted my side effects and feelings into a little poem:
WEEK 1:
One week of meds
Sending positive vibes
No pain, no gain
Its only just begun
Can't eat can't sleep
Lose weight keep fit
Nothin to lose, just look good
Sending positive vibes
No pain, no gain
Its only just begun
Can't eat can't sleep
Lose weight keep fit
Nothin to lose, just look good
Whatever i wear, i bet it fits
Sweats? "no sweat"
Just wet, "what the heck"
My water, my life
Be a camel i will try
When Riba kicks in, its time to be free
If you ever see it, please forgive me
Its the meds, its temporary
Just to let you know, its just not me
Sweats? "no sweat"
Just wet, "what the heck"
My water, my life
Be a camel i will try
When Riba kicks in, its time to be free
If you ever see it, please forgive me
Its the meds, its temporary
Just to let you know, its just not me
Dehydration
I started to sweat more at nights and became a nightly side effect. I drank water like a camel, so thirsty I wished I could run an IV line with water! So bloated that I couldn't put any food in. I wondered where all the gallons of water went? Guess they'd leaked out with the Interferon! Because in our body, blood, muscles, lungs an brain all contain water. It also helps transport oxygen to your cells, removes waste and protects your joints and organs. I drank water half my body weight, added coconut water sometimes, but I should be drinking Gatorade to replace the electrolytes we flushed out through urination and sweats (with the kind of weather here!)
Everyday seemed like living hell's furnace. Eyes have been dry, burning, itchy, teary, vision deteriorated because I could hardly see with my prescription glasses! Could not keep my eyes wide open, not that I felt sleepy, it's just so irritating the eyes naturally squint! No eye drops were ever enough.
Everyday seemed like living hell's furnace. Eyes have been dry, burning, itchy, teary, vision deteriorated because I could hardly see with my prescription glasses! Could not keep my eyes wide open, not that I felt sleepy, it's just so irritating the eyes naturally squint! No eye drops were ever enough.
Couldn't recall which day I started scratching profusely and rubbed my eyelids and earlobes. Overnight, the skin have thickened with a layer of dry and rough skin. My eyes became smaller, squint and puffy. Even my nose seemed swollen too!
“The darkest hour is that before the dawn.”
– Euripides
Things seemed quite stabilized. Body and mind might have sort of adjusted to all the new sensations. The daily feverish feelings and dehydration have became part of my life and learned to live with it. The side effects persisted and reacted differently each week. My mind could no longer hold details as it used to due to the unfortunate brain fog. Mind could go blank anytime and so sudden that I could simply forget taking my Ribas. I had taken an hour ago but still though I didn't. Some days I would pour the whole bottle of pills out and count how many there's left. So I gave in to the fog and started using a pill box. On some days I even left my pill box at home or brought an empty one to work!
The stabbing pains on the hands and shoulders remain persistent. Felt like having carpal tunnel, frozen shoulders, tennis elbows and arthritis all over. Hair loss was also noticeable as I swept the floor when a brush full of hair each time I brushed or finger combed. Strands of hair would rest on my shoulders waiting to be swept off. Clumps of hair lying all over the floor, the daily collection at the shower drain and the feeling of it falling all over me was creeping me out and totally unbearable. The whole floor looked filthy with just hair!
On the 5th week, my vision got worse and blurry everyday. I woke up seeing double. It was 2 am, terrified and thoughts of getting retinopathy was all over my mind. So I went to the Emergency, to get it checked. Nothing was wrong! Went to the Opthamologist 2 days later for an eye exam to ensure no damage from the heavy duty meds. The clinical diagnosis - extremely dry eyes. We could have all the symptoms of Sjogren's Syndrome but when checked, it will be negative. It's all only false alarm though. But when it really happen to you, it's so scary you thought you would go blind.
Four weeks finally passed and I had already been experiencing lots of sides. It have been a busy month for this newbie trying to cope and deal with this therapy, balancing with work, family and personal life. As I embark on this journey into the unknown, I noted the current sides onto a poem as part of my diary:
WEEK 4:
Today vision has gone bad
Close my eyes and rest
Open my eyes yet see double
Everythin seems so blur
Looks like im in trouble
Today vision has gone bad
Close my eyes and rest
Open my eyes yet see double
Everythin seems so blur
Looks like im in trouble
“What is to give light, must endure burning.”
– Viktor Frankl
It's kicking my butt since 6th week. I have been so tired every night and I thought I took every measure to ensure decent sleep, but after possibly 3 hours was wide awake for 4+ hours. I know this maybe normal for most people, but it wrecks me. What amazed me is that I could still work and kept my eyes alert most of the time even though I am sure its droopy. But I definitely wished I do not need to get up every morning because I simply couldn't get up, extremely tired and crappy.
From the 7th week, the fibro, backache and widespread pain became intolerable. Pain was 24/7 at the scale of 7/10. I could not focus on work, could not get to sleep at night and I felt like something is stuck inside my muscles all day long, no position seem to be correct. Maybe the pain had affected my mood that I could not control my emotions. Some contractors were unlucky having to meet me at a stressful time when I took the chance to simply vent on minor issues. Sometimes, I surrendered to the pain and weeped in silence. If someone sees me, I would pretend to sneeze like having a cold.
I saw the Hep doctor the following week and as usual asked me how I was and what side effects I was going through. Needless to say as I have been having the same complaint about muscle aches and backache, I asked if he could prescribe pain aids or refer me to the Anaethesiology. He spent 10 minutes noting down my words on my file. He reiterated that I should endure for another FEW months and it will be over! OMG! It's easier said than done - endure a day is another sleepless night. He must be NUTS! I answered him "yes, I can but only with no sleep for the next few months, are you ok with that?" If he were to take over my body I bet he will never say that.
Why do doctors lack the empathy and compassion for their patients, at least? I've met most who are money seeking vampires, not patient helping. When I see a GP for a flu, he gives Panadol. Now that I have a chronic illness, the specialist still gives Panadol. Wonder why we see a specialist for? Just to monitor labs, watch him scribble all the time or pay for their medical school? He wrote the referral letter. Thank God! Finally saw the Pain doctor a week later and got what I needed.
On my 8th week, I woke up with extra heavy feelings of flu and headaches. By late afternoon, I was shivering on the way home from work. That night, I walked into the A & E at midnight. After telling doctor about my ongoing fever he started his medical preaching that I could simply go home with a course of antibiotics. Feeling sickly and in pain I demanded for a FBC in order to check on the levels of WBC. He argued and reluctantly ordered the blood test, prescribed analgesics and administered injection at my request. Don't seem to have any luck with doctors.
Today I started scratching my legs with a vengeance, forehead also sore from the scratching and face have become blotchy. This sensitivity maybe caused by both the Interferon and the Ribavirin. I was afraid if it's going to affect my face badly and worse if there were rashes. It's quite a concern being on the face, the most important part of me ...
So much has been said from my recollection on the first 10 weeks of Hepatitis C therapy, struggling to manage the side effects experienced and how I have been pushing myself through. My next post starts from the 11th week. This is a list of the on-going side effects experienced so far:
Dry eyes - week 1 till present
Dry skin - week 4 till present
Dry skin - week 4 till present
Sore tongue and throat - week 1 till present
Cough - prior starting till present
Rashes - week 8 till present
Chills and fever - Intermittent
Feverish syndrome - week 1 till present
Myalgias - week 1 till present
Arthralgias - week 8 till present
Fatigue - week 1 till present
Fatigue - week 1 till present
Alopecia (Hair loss) - week 1 till present
Neutropenia - Week 4 to 5
Weight loss - week 1 till present
Insomnia - week 4 till present
Brain fog - week 1 till present
Dizziness/"floating" - week 8 till present
Dizziness/"floating" - week 8 till present
Visual changes - week 4 till present
Dehydration - week 1 till present
Night sweats - week 1 till present
Headaches (Intermittent)
Loss in appetite - week 1 till present
Loss in taste - week 1 till present
Light sensitive - week 1 till present
Photo-sensitive - week 3 till present
Noise-sensitive - week 3 till present
Headaches (Intermittent)
Loss in appetite - week 1 till present
Loss in taste - week 1 till present
Light sensitive - week 1 till present
Photo-sensitive - week 3 till present
Noise-sensitive - week 3 till present
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