So yesterday was the first day of my second semester of grad school. It's been tough, I can't say I've ever worked harder in my life, but the rewards are tremendous. I've learned and grown so much.
The workload, however, became more than I could handle during normal waking hours. I spent the last month of the fall semester staying up all night and sleeping for a few hours in the morning before starting all over again. It caught up to me. After Thanksgiving, my long, luxurious remission officially ended. I'm sick again. For real this time.
I met with my doctor the week school ended. I'm going to try Pentasa for a couple of weeks to see if it helps. With all of my holiday travels (and holiday tests of my stomach's maximum capacity), I'm not sure I've given it a fair shot yet. I think I will wait to the end of this week to determine whether or not it's working. I'm hoping I caught it early enough this time and I won't need anything more than a few pills.
Yesterday I held off on eating until 6:00pm, at which point I had a few rice cakes. My stomach is far more sensitive in the mornings so I decided a light snack at dinner time followed by stuffing my face when I get home at 11pm will probably work best. The problem is, the splitting headache I got in the middle of my late class. The school has a single restroom for the ladies and it is directly outside of our classroom. So you see my dilemma. Better to starve than to have to use that bathroom for an emergency. I'm hoping the Pentasa works. I'm not interested in the Humira vs The Insurance Company battle right now.
Showing posts with label Medication. Show all posts
Showing posts with label Medication. Show all posts
Tuesday, January 8, 2013
Monday, February 13, 2012
Day 44
I'm sitting on a train, heading home to see my parents. More specifically, we are going to the hospital tomorrow for my father's one month, post stroke visit.
I've lived through enough to know that this was another turning point, when Dad had his stroke. We will tell stories now about before Dad had his stroke. We will talk one day about Dad never being the same after his stroke. We've already worried over what we should have done differently when Dad had his stroke. For several weeks prior to his fall, we noticed that he wasn't the same. Something about his facial expression. He seemed slower, less alert. Something just wasn't right. We should have done something then. But we did! Mom made him go to the doctor who said his thyroid was low. He wasn't home when they called so they told me about his thyroid. I knew it was nonsense. I cursed the lazy, overbooked family doctor I saw as a teenager and young adult. But I didn't do anything.
Then he fell. He told us some story about taking his meds without having had breakfast. We gave him some crackers and water and didn't call the ambulance. He told us not to. We knew he was going to fall as soon as we left him by himself, but we still didn't call the ambulance. We waited until he fell again. We learned not to question ourselves, our instincts.
This brings me back to healthcare and how far we still have to go in this country. Living in New York where the best of the best are available if you have enough money (this absolutely includes healthcare), I've forgotten how mediocre the healthcare is in my hometown and probably in most other rural communities. I've had enough hour-long visits with my New York doctor, his door closed, phone muted, to forget what it was like. I've forgotten how frustrating it is when the one person who may be able to help you leaves the room every two minutes of your fifteen minute visit. I've forgotten how scatterbrained the doctor can be when he has three other patients waiting in other rooms. I've forgotten how devastating it is when the doctor is in such a rush that he mixes up your paternal grandmother's diabetes with depression because it's the next disease on the list, then prescribes antidepressants instead of doing his best to find out that you have Crohn's Disease.
There is no reason why a DOCTOR should see a 64 year-old man with high blood pressure who is having trouble walking and is confused and NOT suspect a stroke. Looking back now, it is so obvious. Thyroid medication? A higher does of blood pressure medication? Did he really not suspect a stroke? Did he not think for a second that he should do the simple motor skills tests the doctor used at the hospital to help diagnose my dad's stroke? The simple, free tests that would have cost him only an extra five minutes? Where was his mind? On the insurance checks that would come rolling in after he cycled through the waiting room full of people?
So here I am on the train. I have to fight for my dad because he won't fight for himself. I'm not ready to let him die because the doctor is too busy.
I've lived through enough to know that this was another turning point, when Dad had his stroke. We will tell stories now about before Dad had his stroke. We will talk one day about Dad never being the same after his stroke. We've already worried over what we should have done differently when Dad had his stroke. For several weeks prior to his fall, we noticed that he wasn't the same. Something about his facial expression. He seemed slower, less alert. Something just wasn't right. We should have done something then. But we did! Mom made him go to the doctor who said his thyroid was low. He wasn't home when they called so they told me about his thyroid. I knew it was nonsense. I cursed the lazy, overbooked family doctor I saw as a teenager and young adult. But I didn't do anything.
Then he fell. He told us some story about taking his meds without having had breakfast. We gave him some crackers and water and didn't call the ambulance. He told us not to. We knew he was going to fall as soon as we left him by himself, but we still didn't call the ambulance. We waited until he fell again. We learned not to question ourselves, our instincts.
This brings me back to healthcare and how far we still have to go in this country. Living in New York where the best of the best are available if you have enough money (this absolutely includes healthcare), I've forgotten how mediocre the healthcare is in my hometown and probably in most other rural communities. I've had enough hour-long visits with my New York doctor, his door closed, phone muted, to forget what it was like. I've forgotten how frustrating it is when the one person who may be able to help you leaves the room every two minutes of your fifteen minute visit. I've forgotten how scatterbrained the doctor can be when he has three other patients waiting in other rooms. I've forgotten how devastating it is when the doctor is in such a rush that he mixes up your paternal grandmother's diabetes with depression because it's the next disease on the list, then prescribes antidepressants instead of doing his best to find out that you have Crohn's Disease.
There is no reason why a DOCTOR should see a 64 year-old man with high blood pressure who is having trouble walking and is confused and NOT suspect a stroke. Looking back now, it is so obvious. Thyroid medication? A higher does of blood pressure medication? Did he really not suspect a stroke? Did he not think for a second that he should do the simple motor skills tests the doctor used at the hospital to help diagnose my dad's stroke? The simple, free tests that would have cost him only an extra five minutes? Where was his mind? On the insurance checks that would come rolling in after he cycled through the waiting room full of people?
So here I am on the train. I have to fight for my dad because he won't fight for himself. I'm not ready to let him die because the doctor is too busy.
Tuesday, December 20, 2011
Happy Chrohniedays!
I hit up the pharmacy this afternoon for my meds. It's only been a month since my insurance company started covering my prescriptions at 100%. I still cannot believe that I can walk into the pharmacy and walk out with my script without any money changing hands. It's like a layer of stress has been lifted from my shoulders. No more claim forms. No more angry calls to the insurance company (well, as soon as I get the rest of the flex payments they owe me for 2011).
A few weeks ago, my husband got the cold everyone seems to be passing around. I was fine for a week or so, then a coworker came down with a different variation of the bug. I guess my immune system had enough and I got it too. I feel much better than I did a few days ago but it seems to be lingering. I skipped my Humira last week (do you guys do this when you get sick?) in hopes that a little immune boost would do the trick. Who knows if that helped at all. My voice fades by the end of the day and my right ear feels a little waterlogged. I should probably call the doctor but, seriously, who has the time right now?
Holiday festivities begin here Thursday with an airport run then a quick trip in to the city to see the Rock Center tree before driving to my parents' house. I purchased my last Christmas gift today and wrapped everything. I ran out of Christmas paper three quarters of the way through so my niece is getting some books wrapped in flower paper. What? There's a recession!
I'm feeling pretty calm this year. I found some good sales, got some good gifts, have all my stuff together four whole days before Christmas. I'm looking forward to a stress-free holiday week and wishing the same for all my Crohnies!
A few weeks ago, my husband got the cold everyone seems to be passing around. I was fine for a week or so, then a coworker came down with a different variation of the bug. I guess my immune system had enough and I got it too. I feel much better than I did a few days ago but it seems to be lingering. I skipped my Humira last week (do you guys do this when you get sick?) in hopes that a little immune boost would do the trick. Who knows if that helped at all. My voice fades by the end of the day and my right ear feels a little waterlogged. I should probably call the doctor but, seriously, who has the time right now?
Holiday festivities begin here Thursday with an airport run then a quick trip in to the city to see the Rock Center tree before driving to my parents' house. I purchased my last Christmas gift today and wrapped everything. I ran out of Christmas paper three quarters of the way through so my niece is getting some books wrapped in flower paper. What? There's a recession!
I'm feeling pretty calm this year. I found some good sales, got some good gifts, have all my stuff together four whole days before Christmas. I'm looking forward to a stress-free holiday week and wishing the same for all my Crohnies!
Sunday, May 8, 2011
Update
I survived the developing-country-film-shoot but barely. I was great for a few days but the unfamiliar food, lack of sleep and stress got to me. I had to skip a few meals but I made it out alive. The experience was amazing and I'm so glad to have had the opportunity. I ended up doing everything but taking photos, but it is a week (and a half) that I will always remember fondly.
The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.
I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.
I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.
The shoot came two weeks after my first skipped dose of Humira. I realize now that it was stupid to miss a dose but, at the time, I was feeling great and thought I would be fine missing one little injection. It was March and I was on my third Humira refill of the year. My insurance company had still not given me back a penny for 2011. I harassed them for weeks and made absolutely no progress. Each of my calls were met by a new diversion or straight up lie. Unending frustration. I had shelled out close to $6k for the year with no proof that I would ever see any reimbursement and I could not afford to spend another $2k, so I skipped it. A few hours before my flight, the insurance check arrived in the mail. Too little, too late.
I will never know if the trip would have been Crohn's free had I taken the Humira before I left. I will never know if I would have been ok skipping a dose if I were eating and sleeping comfortably at home. I do know that I felt much better a few days after I stuck myself upon my return. Thanks again, Humira.
I took three trips in the four weeks following the shoot and I can't say I was in good health. Flying kills my stomach. I don't know why. Even a short, one hour flight is enough to put my guts in knots. An even bigger problem is sticking to my regular food routine once I arrive at my destination. It's just impossible. Hopefully one day I will figure it out but, for now, for me, traveling means suffering. It's totally worth it.
Friday, March 19, 2010
Health Care Reform
I will be honest, I haven't found the time to read the details of the health care reform bill that will likely be passed or shot down by Congress this weekend. I know generally what it's about but I also know there are a lot of rumors flying around the web. I don't know exactly how this bill will affect me but I doubt anyone really knows. I do not know if this bill is the right move or if it's a step back. This is what I know.
I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.
I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.
I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.
This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!
You cannot convince me that we do not need health care reform.
I have health insurance through my employer. A portion of my pay is taken from my paycheck each month and is put toward my insurance coverage. I drag my butt to work every day through all of the symptoms listed on the Pepto-Bismol commercials as well as some bonus symptoms. I pay 20%, and sometimes more, of all my medical bills in a timely manner. Yet my insurance company continues to fail me time and time again.
I spent several hours each day this week on the phone with my insurance company, the caseworker who was assigned to me by my insurance company and a new pharmacy. Each time I spoke with someone I got a different story. I was told that my medicine would be cheaper if I used a pharmacy that was in network. I was then given the number of an "in network" pharmacy by someone at the insurance company. I then called said number only to hear back from the pharmacy that my insurance company told them they were not in my network. The next person I spoke to then told me they were in my network. And on and on and on. "Call the pharmacist." "Have the pharmacist call us." "We don't deal with pharmacists." I was then informed that PHARMACEUTICAL SERVICES DOES NOT HAVE A PHONE! They can give me a fax number and an email address but they don't have a phone. I am not able to speak with someone at my insurance company's pharmaceutical services department.
I had to call the most helpful pharmacy employee on earth about a hundred times to apologize profusely for wasting his time and ask him to call another 800 number just so someone could tell him that they couldn't help him.
This week I literally WASTED at least eight hours of my life just getting a prescription filled. In the end, I paid exactly what I would have paid had I not made one single phone call. I paid the same price I would have paid had I gone to the far more convenient out-of-network pharmacy in my office building. That price? $1700.00. AND I HAVE HEALTH INSURANCE!
You cannot convince me that we do not need health care reform.
Wednesday, February 24, 2010
Blah
I spoke with my doctor last week. My blood test was fine except for slightly elevated liver levels (sorry, I have nothing more specific). He thinks it's probably from the Tylenol I've been taking for headache but my numbers were not high enough to stop the Tylenol.
The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.
Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?
And so we wait...
The doctor agrees that my joints shouldn't be more painful now that I'm (supposedly) in remission. He is sending me to a Rheumatologist who I will see next week. This particular doctor comes highly recommended by my Gastro, online reviews and someone I know who has seen him. As always, I am incredibly grateful to live in New York and have access to some of the best doctors in the world. I have an appointment next week.
Otherwise, I'm still having headaches several times a week although I haven't had a migraine in quite some time (knock knock). My guts are generally quiet during the week as long as I don't eat lunch - which I learned the hard way last week. The weekends are still a bit more tumultuous because I like food, OK?
And so we wait...
Tuesday, November 17, 2009
Humira
Well I did it. I injected myself at home with Humira. It went well, I think. I have a tiny little red dot at the spot where I stuck myself and that's about it.
I had the first two injections at the doctor's office last week and had no problem then either. I gave myself two injections with the supervision of my doctor and it was easy enough - a tiny little sting for ten seconds then you're finished. I am using the pens which are great. I like that I can't actually see the needle entering my skin. In fact, it's a bit difficult to see the needle at all. Fine with me.
There's a great instructional video on the Humira site. It's not as difficult or scary as I had myself believing.
The first week I got a headache a few days after the injections. The headache lasted about three days straight. I can't be sure that it was Humira related. I guess I will find out. It was a double dose the first time so maybe this time it will be better? Please?
There was a little bit of a problem at the doctor's office with one of the pens. But, once again, Humira came through and sent two replacements. So far, the experience with Humira/Abbott has been pretty good. Now, if only something could be done about my insurance company...
I had the first two injections at the doctor's office last week and had no problem then either. I gave myself two injections with the supervision of my doctor and it was easy enough - a tiny little sting for ten seconds then you're finished. I am using the pens which are great. I like that I can't actually see the needle entering my skin. In fact, it's a bit difficult to see the needle at all. Fine with me.
There's a great instructional video on the Humira site. It's not as difficult or scary as I had myself believing.
The first week I got a headache a few days after the injections. The headache lasted about three days straight. I can't be sure that it was Humira related. I guess I will find out. It was a double dose the first time so maybe this time it will be better? Please?
There was a little bit of a problem at the doctor's office with one of the pens. But, once again, Humira came through and sent two replacements. So far, the experience with Humira/Abbott has been pretty good. Now, if only something could be done about my insurance company...
Thursday, November 12, 2009
The End Is Nigh (I Hope!)
The past two months have been a challenge to my sanity. Working out a way to begin biologic treatments has become a part-time job. After wrestling with the insurance company for weeks then spending a few days on the phone with the Humira people, I have finally FINALLY picked up my starter kit.
I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.
Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.
I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.
My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:
Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?
Am I going to tolerate this stuff?
Should I really be injecting something into my body that has only been on the market for seven years?
What if biologics don't work for me?
I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.
I have tried pretty much every pill in the book in an attempt to gain control over my symptoms with minimal success. I have wasted an incredible amount of time and money because my doctor prefers the "bottom up" approach, which also makes sense to me. If a cheaper drug with fewer or less serious side effects works - it's better to find that out than to jump straight to the hardcore stuff. If I had to choose again, and I probably will someday, I would likely make the same decision. I'm lucky in that my symptoms, although present on a daily basis for over a year, were never so serious that emergency action was needed.
Much of my energy has been focused on getting access to Humira without going into debt for quite a while. I am relieved to finally have the medicine in my possession, but the relief has been overshadowed by my fear.
I am terrified. Over the past year, as each drug failed then each combination of drugs failed, I knew that there was always another option. I knew I always had biologics to fall back on and now here I am, two days away from two shots of Humira.
My fears range from the trite (I have to stick a needle into my body???!!!) to the completely absurd (someone will probably cough on me on the subway and I will be the next Swine Flu casualty). Then there are the reasonable fears:
Is my insurance company really going to reimburse me 80% of the fortune I spent at the pharmacy yesterday?
Am I going to tolerate this stuff?
Should I really be injecting something into my body that has only been on the market for seven years?
What if biologics don't work for me?
I have read through just about everything ever written about Humira. There is so much information out there and it's hard to know what's true. I guess it's out of my hands now. I'm going to stop reading now and hope for the best.
Wednesday, November 4, 2009
The Long Road to Humira
My doctor left choosing the biologic up to me which meant it was up to my insurance company. Brilliant. I have a long and sordid history with my insurance company and knew from the start that this wasn't going to go well.
I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.
My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.
So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.
A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.
I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.
I made the first call. The woman I spoke with put me on hold for 10 or 15 minutes. When she got back to me she told me that injectibles are not covered. Period. Sorry. I took a deep breath and got a copy of my insurance policy from HR. Then I spoke with our insurance person in the office. She made some calls and nothing happened for a couple of weeks then, suddenly, I had a case worker calling me from the insurance company.
My case worker called to let me know that she is an RN and also has Crohn's Disease and she is stuck in bed with unbearable pain if she stops her meds for five days. Why am I off my meds for five weeks? Do I have any idea what could happen to me without medication? Then she went on to describe to me what a fistula is. She told me I needed to start my medication and worry about the insurance mess later. Seriously? This woman from the insurance company called to let me know how urgent it is that I begin treatment but offered nothing in the way of expediting the process? Also, she is an RN AND she has Crohn's Disease AND she works for an insurance company but she's never heard of Humira? Really? Finally, does she think I'm new to this and she's going to trick me? I know better than to pay for medical expenses without having some sort of clearance, especially when the medical expenses are close to $6000.
So I continued to call the insurance company and case worker every other day for a few more weeks until the insurance company decided that I tried all of the other medications available and they would make a "standard of care" exception. As usual, I would pay for the medication up front and the insurance company would (should) reimburse me 80%. Research indicated that Remicade would cost me about $6000 per treatment every 8 weeks. That's about $3000 per month. At $1600 per month the Cimzia and Humira were much cheaper. I decided on Humira because it has been on the market longer.
A week later I had found a pharmacy that was "in network" and ordered my Humira Crohn's starter kit. It was $5700.00. That meant I would pay $1140 out of pocket. Thankfully, Abott has an amazing assistance program for those who may need help paying for Humira. Those with Crohn's are eligible for up to $1000 savings on a starter kit and, I believe, $350 each month after that. My doctor's office sent over a patient assistance card from Humira and I began making calls.
I want to be clear, I have had an amazing experience with the people who answer the phone when you dial 1-800-4-humira. They are sweet and understanding and as helpful as can be. They all wanted to help me but a few of them just didn't understand the situation. After several calls, I finally spoke with a woman who got it. She told me that the pharmacy should ring up the Humira at full price ($5700) then run the card - it would look on the receipt like I paid with a gift card or something. Then I would pay the remaining $4700, send the receipt in to my insurance company and they would reimburse me 80% of the full price ($5700). This meant I would end up paying only $140 dollars out-of-pocket. Completely manageable. I was feeling so much better about all of this biologic stuff.
The Biologics Discussion
We went to Dr. C's office and he made me another list. He told me I could choose from Remicade, Humira or Cimzia and that he may prescribe Methotrexate along with whichever biologic I chose.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
I asked how long it would be until I saw results. Dr. C said I could expect results in two to four weeks and, if I didn't see any results, I would discontinue use after three to four doses. If it did not work, it would take about six weeks to leave my system.
We all know these medications come with risks, especially the risk of infections. I learned that I would have TB, Hepatitis B, Hepatitis C, HIV, and HPV tests before I could be cleared for biologic treatment. My doctor also mentioned that there is a very slight risk of Lymphoma with these treatments (slight meaning about a dozen cases in hundreds of thousands of those being treated).
On the brighter side, the dr. told me that there are fewer side effects with biologics and I would take them much less frequently than the other medications I was taking at the time. Best of all, biologics usually work.
I left feeling hopeful but still really nervous.
Wednesday, October 14, 2009
Steroids
Entocort
Entocort aka Budesonide is a steroid that is released in the intestine. The idea is to keep it out of the blood stream and limit side effects.
I didn't have any trouble with side effects on Entocort but it didn't help either. I tried it for a month with no results.
Plan C.
Entocort aka Budesonide is a steroid that is released in the intestine. The idea is to keep it out of the blood stream and limit side effects.
I didn't have any trouble with side effects on Entocort but it didn't help either. I tried it for a month with no results.
Plan C.
Tuesday, October 13, 2009
5-ASA
Pentasa
My Crohn's treatment began with Pentasa also known as 5-aminosalicylic acid or 5-ASA. Pentasa is an anti-inflammatory that acts only in the digestive track which means there should be fewer side effects.
I had some trouble with Pentasa. I started off with six pills per day and the nausea was awful. I cut back to three pills then added one pill a week until I got back up to six. The nausea got better but my symptoms did not improve after a couple of months.
Time for plan B.
My Crohn's treatment began with Pentasa also known as 5-aminosalicylic acid or 5-ASA. Pentasa is an anti-inflammatory that acts only in the digestive track which means there should be fewer side effects.
I had some trouble with Pentasa. I started off with six pills per day and the nausea was awful. I cut back to three pills then added one pill a week until I got back up to six. The nausea got better but my symptoms did not improve after a couple of months.
Time for plan B.
Monday, September 14, 2009
Then It Was IBS
Eventually I did feel better. I still had diarrhea several times each month but nothing like it was before. This went on for almost two years. I was off all of the medicine and was living a mostly normal life. I worked 40 hour weeks and worked on projects outside of work. I occasionally went out drinking with my friends. I didn't get enough sleep but I was fine.
Two years after the original colonoscopy my symptoms worsened. I went back to my primary care physician who thought it was Irritable Bowel Syndrome. He prescribed Effexor which, I was told, is an antidepressant that is sometimes effective against IBS. I was wary of this solution as I've heard about the side effects of antidepressants, but I certainly didn't want to go broke paying for tests which would all come out negative so I went for it.
I did feel better. I don't know if it was the stabilizing effects of the Effexor or a coincidence but my symptoms improved for a while. I was a little more sluggish on the Effexor but the only major side effect was a strain on my bank account. My insurance does not cover "mental health" treatments and Effexor is not FDA approved for the treatment of IBS.
I later found out that my doctor suspected that I was suffering from depression and I can see why. I only saw him a few times each year but every time I went to his office I found myself crying. I was terrified. I didn't want to starve and sleep away another year of my life. I had recovered financially and did not want to have collections agents after me again. Worst of all, I didn't know what was wrong with me. My test results were always normal and I was beginning to think I was crazy.
Two years after the original colonoscopy my symptoms worsened. I went back to my primary care physician who thought it was Irritable Bowel Syndrome. He prescribed Effexor which, I was told, is an antidepressant that is sometimes effective against IBS. I was wary of this solution as I've heard about the side effects of antidepressants, but I certainly didn't want to go broke paying for tests which would all come out negative so I went for it.
I did feel better. I don't know if it was the stabilizing effects of the Effexor or a coincidence but my symptoms improved for a while. I was a little more sluggish on the Effexor but the only major side effect was a strain on my bank account. My insurance does not cover "mental health" treatments and Effexor is not FDA approved for the treatment of IBS.
I later found out that my doctor suspected that I was suffering from depression and I can see why. I only saw him a few times each year but every time I went to his office I found myself crying. I was terrified. I didn't want to starve and sleep away another year of my life. I had recovered financially and did not want to have collections agents after me again. Worst of all, I didn't know what was wrong with me. My test results were always normal and I was beginning to think I was crazy.
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