So last week I injected myself with another dose of Humira. The three days prior to that second dose wasn’t too great. I was beginning to have my morning stiffness back, my neck was starting to hurt and my knees also started to get painful. I was beginning to think the treatment would fail. A day after that dose, I felt way much better though, so much that I started to jog last Monday, and then Tuesday. I think I overdid it Tuesday so that my knees got swollen and my hips made this cracking sound. I eventually stayed at home the rest of the week. Yesterday, the repairmen came and got our fridge running again, which meant we had to transfer our food supply from the old fridge in the garage back to the fridge in the kitchen, which is why i ended up cleaning the fridge in the kitchen. You could guess what happened next. My finger joints got all swollen and inflamed. I guess I overdid it again. So much for getting back to old chores. Today I feel better, and I’d better be because it’s a weekend and on Tuesday will be another dose of Humira.
Humira, generic name Adalimumab is a “recombinant human IgG1 monoclonal antibody specific for human tumor necrosis factor (TNF)” (rxlist.com) TNF is a cytokine that is normally present in human beings, and is particularly helpful in the normal inflammatory response and immune response. In rheumatoid arthritis, because of the somewhat hyperreactivity of the immune system in individuals with RA, TNF levels are usually increased, and this plays a role in the autoimmune destruction of joints in RA patients.
It was on the 13th of August that I injected my first dose of Humira. I was prescribed the pen so it was kind of easy to use. After prepping the area with an alcohol swab ( I used 4 swabs- talk about being nervous), I immediately prepped the pen for injection and then injected myself with it on my left front thigh. It was the usual injection pain with the infusion lasting for a minute or so before I pulled out the needle.
I didn’t feel anything different until day 2 post-injection when I had nausea, especially in the morning, but no vomiting. I also had a couple of headaches, but they were not very severe to warrant a painkiller. I also had some dizzy spells and with stomach pain (primarily in the epigastric area- thats the area just below the ribs). It has triggered my gastritis so much that I had to rush to the drugstore to buy an antacid. The nausea and stomach pain persisted until the next dose and I guess they will be mainstay side effects.
Aside from the milder side effects I mentioned, I’ve also been having the sniffles, but I’ve become so used to my allergic rhinitis that the somewhat worsening of my sniffles in the morning hasn’t really bothered me at all.
On the third day I had noticed a significant decrease in my level of fatigue and weakness. This was the most noticeable improvement in my symptoms. With regards to morning stiffness, the time required for my stiff joints to resume activity in the morning has also decreased from more than an hour to 30 minutes or less. My joint pain, which I usually score with a 7 or 8 on the painscale, has also decreased significantly to a 5. There is still some pain, especially on my lumbar spine (lower back), my elbows, knees, ankles, wrists and fingers, but my Cervical spine (neck area) pain has decreased so much that I could turn my head sideways once again without much pain. Aside from being almost pain-free, (I’m halfway there at a painscale of 5!), I haven’t had any flares since I took the injection.
I feel that this is the start of my being pain-free after more than 3 years of suffering. How pain-free I will be in the next few months will be gauged by how I am able to resume normal activities with less or as much as possible, without pain. The therapeutic effect of this chemotherapy will be tested when I start working again. In the next weeks and months, I will be documenting my improvement and any further side effects. And if I am able to go into full remission and wean myself from this chemotherapy, I hope to encourage other RA patients who haven’t decided yet on whether or not to go through the same chemotherapy .
I’ve been in and out of the US since I was a kid and it wasn’t until this visit that I got to experience how it is with the US healthcare delivery system, as a patient.
EXPERIENCE # 1: The Trip to the Emergency Room
I arrived in May of this year. After a month, I was brought to the Emergency Room of the hospital Sam works in (Bartlett Regional Hospital) in Juneau, Alaska, for severe pelvic pain. When we arrived at the emergency room, he had to speak into this receiver thing that informed the nurses inside about a patient waiting outside the door. I was in a whole lot of pain. And the only thing I can remember is that the nurses carried me, positioned me on a stretcher, and wheeled me into the ER. And while doing that, mind you, she was very comforting and gentle. When they transferred me to a bed, they interviewed me a little, and then Sam, and then the ER doctor came, examined me, and then the nurses went on to insert an IV and give me pain medications. The doctor then ordered an ultrasound and some blood work. NOTE: the nurse at the ER who inserted my IV line already took a blood sample, so I wasn’t poked again. Somebody from the billing office came, asked for insurance card and then interviewed Sam some more. We waited for the Ultrasound tech for around 20 minutes before I was wheeled into the ultrasound room. Every 10-15 minutes, a nurse would come over and check on my pain scale. And for the first 30 minutes of severe pain, she gave me 2 doses of Hydrocodone. When the nurse saw me vomiting, she went ahead and gave me Zofran (without having to wait for the doctor to order it, which was a good thing, really, because the doctor was busy with some drunk patients in the other room). The diagnostic results came out, the pain subsided, I fell asleep. And after 2 hours, we were on our way home. The bill came after a week. Insurance covered a percentage, so we had to pay part of the bill. Not bad for my first ER experience as a patient. One thing I really liked- service first, bill later. In the Philippines, patients get stuck in the emergency room for being unable to pay the bill- which is given to them before discharge. This not only happens in the emergency room, it also happens with inpatients. I, as a doctor, would also have to worry on whether the patient could afford a lab test or diagnostic procedure, admission, and medications. Sometimes, we let go of the ideal, in order to come up with the most affordable diagnostic procedure and management plan. Most of the time it has been advantageous for us doctors because we then learn not to rely on diagnostic procedures that much. In fact, it has sharpened our physical examination and history taking skills. But we cannot ignore the fact that patients, especially those who cannot afford, are being deprived of the ideal healthcare.
EXPERIENCE # 2: How hard it is to set up an appointment with a doctor
I was told to follow up with a certain OB-Gyn a week after that ER incident. But I wasn’t able to get an appointment. The earliest appointment I could get was after 2 weeks. I had a bleeding cyst in my ovary, and I couldn’t wait for two weeks. I was told by the ER doctor that if it causes any trouble and I would be needing emergency surgery, I would have to be airlifted to Seattle. I called all the clinics of all Family Physicians in Juneau, and guess what, they also won’t be able to see new patients until after 2 weeks. That’s why I had to fly to LA and look for my doctors here. I made an appointment with two specialists- one for my endometriosis and the other one for my arthritis. And I was able to get appointments for the week after that. Back home, I could have just called up classmates, or my mom’s classmates in medschool and I would have an appointment with a specialist on the same day. That’s one thing I would really be missing. I guess I would need to get used to how it’s done here now.
EXPERIENCE # 3: The surgery – Pre-operative and Post-operative follow-up
After consultation with the OB-Gyn specialist, I was immediately scheduled for surgery in 2 weeks. I was sent a packet a week before the surgery, which had very clear instructions on what to do before the surgery day. It also had instructions on what to wear, which medications to stop, what to bring, etc.. There were also papers, consent forms and agreements that I had to sign and send back to them. The doctor’s clinic nurses called me every 3-5 days to ask if I had questions. We should do this more often in the Philippines. And since the doctors are too busy to answer questions most of the time, nurses or nurse assistants should take on the role of following up on the patient, both pre- and post- operatively. The day of the surgery, I didn’t have much trouble because the nurses were very accommodating. I had a nurse that stayed with me for the whole duration of my recovery in the recovery unit. She never left my side. Three days post-surgery, a nurse called and followed up on my pain, bowel and urinary movement, and diet. If only we could also do this back home- nurses following up on patients. It could prevent dissatisfaction from patients, and most importantly, complications from medical or surgical management.
EXPERIENCE # 4: My Rheumatologist
I also consulted a Rheumatologist for my Rheumatoid Arthritis (Sabi nga ni Sam, i-todo mo na ang pangongonsulta ng specialist para sulit ang insurance.haha). And I was wowed by the way my Rheumatologist convinced me to start chemotherapy with Adalimumab (Humira). He not only talked to me thoroughly on the treatment options, he also gave me advice on how to review for the US medical board exams. He was so thorough that I didn’t have much to ask him in the end. He gave me instructions on the lab work and tests that I needed to have and elicited a commitment from me to follow up with him every 3-4 months, since I will be going home to Juneau. That was the best consult I have ever had in my entire life as a patient. It feels good when the doctor actually understands how much pain you go through. It comforts us when the doctor recognizes that our pain is real and understands. I guess he would serve as a good example to me when I get back to practice medicine, that is if I will.
EXPERIENCE # 5: Humira
When I learned that I would have to be on Humira for the longest time, I immediately researched about how much it would cost us. I also called insurance to ask how much they will be covering. I will have to be injecting Humira every 2 weeks- so that’s two injections per month, and I found out that each injection costs around $2,000! So much for ideal treatment. But guess what, Sam talked to his HR department and found out that the hospital and the pharmaceutical company that makes Humira have a special agreement on insurance coverage and discounts for employees and dependents of employees, which significantly lowered our co-payment to $120 per injection! After my rheumatologist heard about this, and aside from being glad about it, he also offered a co-pay card which, according to him would decrease the cost to $5 per injection! That really got us excited. The specialist pharmacy called me yesterday to confirm delivery of the meds. How I wish we could give this to our patients back home. How I wish we could give them the most ideal treatment they could get without us doctors having to worry, or them having to worry about the cost of treatment.
I may be having a lot more experiences in the coming days, and this year, but due to my painful fingers, this is it for now.
photo taken from usada.org
I’ve had 4 blood sample extractions done to me, and had been poked twice for an IV line in just a month. Although there are some people-patients usually- who get more than that, I never really counted the number of experiences I’ve had with needles, not until now. The skin overlying my most accessible veins now have visible scars from needle pricks. And the needle scars definitely make a statement- either you get mistaken for a drug addict, or they know you have a chronic illness. Just last week, I had my blood drawn for a number of tests, and it was the longest blood extraction I’ve ever had. She told me she couldn’t see my vein, but still stuck the needle in. For more than a minute, she was “weaving” through my skin to find that vein. It is during these times that I miss my husband terribly. I don’t know how he makes it fast and painless (naks, syempre love your own). Anyway, when blood finally flowed out to the tube, she let out a very loud sigh. All that time I tried to calm her down, because after half a minute of searching with the needle already inside my skin, her hands were already shaking. If she was new, good thing I was the patient. If it were somebody else who’s not from a medical field, she would be getting the slap (or the lawsuit) of her life.
When I see patients, child and adult alike, who turn pale when the phlebotomist pokes the needle through the skin, I can’t help but wonder how I look like everytime a needle goes through my skin. When I was a child, I was in and out of the hospital for asthma. I can’t say how much I’ve gotten used to the idea of getting myself poked a lot of times. My mom is also a doctor, and in the most remote part of my memory, the only thing I can recall is that she would look at me with that loving but stern look (more of stern, actually) and say, “Don’t move. Don’t cry. Or else they’re gona miss it, and you’ll have to be poked again.” More often than not, I would request for my mom to take my own blood sample, or insert the IV line herself, and as far as I can remember, the nurses and phlebotomists willingly obliged.
My mom never showed fear or anxiety when I was brought to the hospital. Although she might have felt scared a little, it never showed. She knew I needed to be in the hospital. She knew that a blood sample will have to be taken, and that an IV line will have to be inserted. She never fussed when someone else was drawing my blood and the phlebotomist/nurse couldn’t seem to find the vein, with the needle already in. I never saw her getting mad at a nurse or a phlebotomist for “weaving” through my skin to look for a vein. I guess that’s why I’ve never had that fear of needles or hospitals in general.
Fast forward to last year when I was still working in a hospital. I’ve actually seen parents demean our nurses, phlebotomists, or medical technologists. I’ve seen fathers grab their baby girls from the examining bed when they’ve seen enough failed IV insertions. I’ve heard grandmothers exclaiming, “ Are you practicing your IV insertion skills on my grandchild?!” I’ve seen whole families walk out of the emergency room after a first failed attempt at IV insertion. I’ve even heard of lawsuits for this.
Here’s a word to all parents and grandparents out there. When a child sees that his/her parents/grandparents are anxious or fearful of the needle, they will tend to reflect the same attitude. Some older children even throw a tantrum to draw attention to themselves and elicit pity but that’s another story. They will become all fussy, which as we know, will make it more difficult for medical personnel to draw blood or insert an IV line. I don’t know if there’s scientific evidence for that. But it will really help if both parents and grandparents are aware and put into mind that whatever we do to their baby will help in his/her diagnosis and management plan. That’s one of the reasons why you brought them to the hospital in the first place. Of course we will try our best to make our patients comfortable and pain free, but in the Philippines we usually don’t give local anesthesia for blood extraction or IV insertion. You have to look at the bigger picture- your child is getting the treatment he/she needs. That is most important.
Some parents even go far as threatening the nurses/phlebotomists. You know, if you are anxious about the needle going through your child’s skin, or the blood that flows for every failed IV insertion, don’t take it out on the nurses/phlebotomists. The more you make them nervous, the more anxious they will become. And you know what could happen when a person becomes nervous, their hands shake. And when they’re holding a needle with their hands shaking, well, you know what could happen next. Relax, it’s just a needle and some blood. If you’re not comfortable at all, I would suggest you leave the room, and leave your patient to us. That’s how it’s done here in the US anyway.
Our job is not easy. But we can assure you that we are doing our best. Never demean the nurse, the phlebotomist, the medical technologist, or worse the doctor. Believe me, what we do is not for ourselves, it is always for the welfare of our patients. And the next time you’re tempted to scream,”Are you practicing your IV insertion skills on my patient?!,” remember the saying that goes, “Practice makes perfect.” (*wink*)
photo taken from Arthritis Foundation
1. It IS painful. It is NOT psychological. We are NOT faking it.
I used to practice as a general practitioner in a hospital in the Philippines. My job consisted of going on 30-hr shifts, seeing patients at the Outpatient Clinics, being ER doctor on call, working 90 hours per week max, chart completion, simple surgical procedures, and more. Three years ago, my symptoms slowly progressed from morning stiffness to severe pain on my finger joints, I couldn’t even hold a ballpoint pen in my hand. Still, as most other doctors would do, I went on with my job and just took anti-inflammatory pain medications, used hot packs, and asked for hand massages from my husband. When I would feel really tired, I would push my body to the limit, not realizing that the fatigue was not only caused by stress in the workplace, it was also actually one of the major symptoms of my arthritis. Everyday, I would push myself harder. I was in pain for the most days I was helping others get rid of their own pain. It was a pain score of 8/10 everyday. If it were 10/10 i wouldn’t be able to move. And for someone who could still go on a 30-hr duty with that painscale, that is something. I have learned to live with pain as I also have endometriosis and that is a whole new different spectrum of pain. For someone who knows how the body creates the pain sensation, and how pain is produced in each organ physiologically, my opinion on this could be pretty reliable. I hope you believe me. It is especially difficult in the workplace, where the only reason you have for calling in sick is fatigue or joint pains. Co-workers will always think that we call in sick often because we are lazy and faking it, or we just try to avoid work. People who don’t have it will never really understand how much pain we go through. So if you have a friend or a relative with Rheumatoid Arthritis, please don’t tell them that it’s not really painful, worse, that they might be faking it. If you don’t have Rheumatoid Arthritis, or any experience of it, you don’t have any right to tell us how or how not painful it should be. The least we need are people who refuse to understand.
2. It causes SEVERE fatigue and depression
You know that feeling. I used to blame it on stress. But when you are severely tired almost everyday without even doing anything, that’s a different story. I’ve known about this illness since medschool, been diagnosed with this illness for almost three years now, and believe me, I realized just recently that the fatigue I’ve been having was because of my RA. Why now? Because I quit practicing. I haven’t been doing anything and still I feel really tired almost everyday. You know when you wake up and expect to be refreshed, instead you sulk and sink more deeply into the sheets, because it seemed as though you haven’t slept the whole night at all? That’s how it feels. And when this goes on and you realize you haven’t done anything productive for the past year because of the symptoms, the depression sets in. It’s not easy- not being able to do the many things you want to do. It’s frustrating to be a patient, when I’m supposed to be the one helping patients. And so, for those of you who know someone with RA, please be kind enough to listen to them. Although they may seem like a broken record everyday, it eases our pain when somebody actually listens and understands. More importantly, if you know someone suffering from depression and having suicidal tendencies, please call the Suicide Hotline number in your area.
3. It is not primarily an illness of the elderly
This I really hate. “But you’re too young to have arthritis!” (With a shocked look on their faces). I’ve been asked so many times why I wear a cervical collar around my neck. And when they hear the word “arthritis,” they get shocked and say that all too familiar line.
For the benefit of those who don’t know, arthritis is not only a disease of the elderly, it is also prevalent in the young. In fact, a 2007 CDC study estimates that 294,000 U.S. Children under the age of 18 were reported to have been diagnosed with arthritis or another rheumatologic condition (taken from cdc.gov). Peak of Rheumatoid Arthritis incidence is reportedly between the ages 35-50 years old (emedicine). So, it is not exclusively an old person’s disease. If you are young and you have symptoms, better get them checked by your local rheumatologist before it’s too late. Don’t shrug it off just because you’re “too young.” Nobody is too young to get arthritis.
4. It is Autoimmune
“What causes your arthritis?”
It is an autoimmune disease- like Lupus, Addison’s Disease, Ankylosing Spondylitis….I could enumerate more than a hundred autoimmune diseases. It is not caused by overuse, or wear and tear- that is Osteoarthritis. It is not caused by crystal formation and aggregation in our joints- that’s called Gouty Arthritis. That’s what my husband has. Each classification of arthritis has a different pathology. The joint damage in Rheumatoid Arthritis is caused by the patient’s own antibodies attacking his/her joint tissues. You know when your friends turn their backs against you? Well this is worst. Your own body’s protection system- your immune system- the one that’s supposed to protect you from invaders such as infection, overreacts and attacks your own cells!
5. If some medicine worked for others, it may not necessarily work for me. Rheumatoid Arthritis has NO known cure
My mom wanted me to have a stem cell transplant for my joints. If you read above, and understand the pathology of joint destruction, you would understand that unless I kill my own immune system, the damage will not stop. And even if stem cell transplants could help repair the damaged joints, my immune system would continue destroying my own joints. I was on steroids and methotrexate for a while. And it didn’t help. You must know that some medications work for some, some don’t even work at all. That is why treatment is “tailored.” It’s the same for side effects. Some people get the worst side effects of certain drugs, some don’t. It helps though that a lot of people have been suggesting ways to alleviate pain, or suggesting supplements that might work. Don’t take their advice for granted. It might work for you. There’s no harm in trying. But, there are really some people who do not understand that RA has no cure and will try to force you into buying medications or supplements that you don’t really need. There’s no point in debating about whether or not their suggestion will or will not work. Your doctor’s advice is still the most important. And you still get to decide.
6. It is costly
Anybody with RA will tell you that they’ve been scared about being taken out of their jobs because of frequent medical leaves. Aside from that, treatment of RA is costly. Take Adalimumab (Humira) for example. It costs around $1,800-$2,000+ per injection and that’s every 2 weeks. And don’t forget about physical therapy. If it were not for insurance, I would be living in pain all my life.
7. It makes us rethink our career options
I’ve lived with pain for more than a year before I actually had the guts to consult a rheumatologist. When I felt that the methotrexate was not working, I stopped it. I was in denial. Sometimes the less you know, the less stress you have. Do you know how difficult it is to know and be aware of what would become of my joints after 10 years? Did I go to medschool- go through all that- just to quit after a few years because I won’t even be able to hold a pen in my hand? I could not live the rest of my life not doing anything, or worse, not being a doctor. I would still be a doctor for as long as I can. That’s me. But other people with RA don’t have much choice. Don’t blame us for thinking about other career options. Don’t judge us for doing so. If there’s anyone who knows about our body and how much pain it can tolerate, or how much work it can do, that would be us.
I could go on and on about what people around you should know if you have Rheumatoid Arthritis. But my fingers, wrists, elbows and shoulders are becoming more and more painful as I am typing this blog post. If you would like to add, please do so in the comment boxes below, or email me firstname.lastname@example.org, and I will try my best to copy and paste it in the original blog post. Have a pain free week!
It is my 4th post-surgery day and believe me, I have weaned myself out of the oxycodone (because I’m scared of the addictive potential). I haven’t really talked about my endometriosis since I started this blog. And this recent surgery just gave me a chance to write about it, finally. I was diagnosed with endometriosis in 2006. I was in my third year in medical school and preparing for a presentation in therapeutics with classmates, when suddenly, I was struck with severe pain in my lower abdomen (properly termed, “hypogastric area”). I was brought to the ER and was examined by both the Department of Obstetrics and Gynecology and the Department of Surgery; I could still remember the residents arguing over my case (well, it was a case of twisted ovarian cyst versus acute appendicitis). But because we had an exam the next day, and as most medical students and doctors would, I went HOME AGAINST MEDICAL ADVICE (patients please don’t do this). Predictably, I landed in the ER after the exam, and was immediately scheduled for surgery. They did a Left Salpingo-oophorectomy- in simpler terms, they took out my left ovary and fallopian tube. The doctor put me on pills and other medications to regulate my menses and control the severe pains I had every month. In 2008, I was about to finish my internship year, when I was brought to the ER again for severe hypogastric pain. This time they took out a cyst from my right ovary. By this time, my medications were becoming more and more sophisticated, I had to have injections once a month, which I eventually stopped (again, patients, please don’t stop medications unless instructed by your doctor. I’m a very bad example, I know). I was dysmenorrhea-free for almost 4 years and then the pain came back. Everything that involved use of what’s inside my hypogastrium (the lower part of the abdomen)- my monthly period, ovulation, defecation (pooping), etc- would cause severe pain. My husband and I would go see my Ob-Gyne intermittently for prescription and fertility advice, but we never really took it seriously. I always thought we had a chance at a normal conception, since all my sonogram results were normal. And because it was also around this time that I was diagnosed with Rheumatoid Arthritis, I never really did mind about the cyclic pain that I had (Thanks to pain relievers). Well, not until the worse pain in my life that woke me up in the middle of the night while we were housesitting for a friend in Juneau. We landed in the ER, again. And of course the ER doctor was kind enough to tell us that in case I needed another surgery, and since there was only one Ob-Gyn in Juneau,Alaska (who was on vacation at that time), I would have to be airlifted to Seattle. You could imagine the look on our faces. My husband sent me off to LA (where my relatives are), instead. So here I am, on my 4th post-surgery day. Well at least the doctor didn’t have to open me up in the middle with a 5-inch incision again (My first 2 surgeries were exploratory laparotomy, so I have a 5-inch scar in the middle of my abdomen). This time it was some kind of a robotic laparoscopy, and the doctor just made 3 small incisions- one below the left ribcage, one right above the left inguinal area, and the last one above the right inguinal area. I wish he also made one below the right ribcage, then my abdomen would look like a really large smiley with a long nose and dimples.
So I had my cervical spine xray taken. As expected, the results were abnormal. Straight as a ruler from my point of view, my cervical spine lost the normal contour that it should have. The radiologist, who was one of our principal wedding sponsors, immediately referred me to an orthopedic spine surgeon. My husband and I went to the spine doctor’s clinic after a week. I showed him the xray films on my laptop, and he shook his head. “Yup. There’s definitely something wrong. In fact, it’s so wrong that your cervical spine is now kyphotic with an abnormal kyphotic angle” And then he went on explaining in medical terms how my spine is abnormally straight on xray, yet curved the opposite way, how the bodies of my vertebrae have this so-called pannus, which have invaded the normal spaces, how some parts have eroded, etc. Of course, he suggested an MRI of my cervical spine and prescribed stronger pain medications. He then referred me to his wife, a rehab med doctor who prescribed physical therapy sessions 3w/ week. Also, they made me wear a cervical collar! After one day of wearing the cervical collar, my neck muscles (which were usually very tense) slowly relaxed. I was told not to go on long trips or twist my neck too much. Also, back and neck manipulation should be limited only to that prescribed by the rehab doctor.
The past week, I’ve traveled to Dumaguete and then took a 15-hr landtrip from Dapitan to Cagayan de Oro. Now I’m in Davao. So much for not being allowed to go on long trips. I promise when I get home, I’m gona rest for a few days. Because next week I’ll need to travel to Manila again.
My neck has been getting a lot of attention lately. People seem to be fascinated about my cervical collar. They keep on asking what happened to me. Like this morning at the Cagayan de Oro airport, I think it was routine for the airline people to ask what happened to my neck since I was wearing a cervical collar, and I might not be able to board the plane for health reasons. I told the lady at the counter that I had Rheumatoid Arthritis of the cervical spine, and she just stared blankly at me and said, “huh? Ah, ok.” And I felt that I needn’t elaborate any further.