I Don't Like Spiders And Snakes...

So I have a few irrational fears. Who doesn't?

I have always been afraid of bugs for no reason (aside from this movie), I get nervous butterflies before I get on a roller coaster (a few summers working in an amusement park will make anyone wary) but the one fear I have that is completely unexplainable is needles. I've never had any sort of bad experience with needles. I was reasonably healthy for the first 24 years of my life and didn't have any more injections than the next person. Yet, for some unknown, ridiculous reason, I am terrified of needles.

Just thinking about a needle is enough to make me nauseous. My diabetic grandmother used to ask us to get her needle from the fridge for her. I would send my little sister. Time for a blood test? If I thought about it too far in advance I would be so nervous by the time I got to the doctor's office I wouldn't be able to sit still.

I never thought I would have to actually pick up a needle and inject myself. It gives me the willies. I try not to think about it until it's time. I try to make sure I'm nice and relaxed but I just can't help it. I had my sixth injection tonight and I'm just not sure I'll ever get used to it.

One More Day

Thanksgiving weekend went pretty well. I narrowly avoided disaster in the middle of a long drive on a highway with very few exits. I had a great time. I ate too much but it was worth it. Nothin' like home cooking.

After a long weekend with the family I realize how lucky I am. No family is perfect and mine is no exception, but I am incredibly blessed to have parents who would do anything for me and siblings who are also great friends.

As far as the Crohn's goes, I'm not doing very well. Tomorrow is Humira day. I think I will give it a few days and see what happens. We had a little slip up on the last injection and I didn't get the entire dose. I'm hoping that's what the problem is and the medicine kicks back in this week. I'm not very good at waiting games.

The Crappy Week Continues...

I'm still having major digestive problems but the headaches seem to have stopped. I am convinced, although my doctor finds it strange, that the headaches begin a day or two after my injection and continue for a few days. I could deal with headaches if they came with some sort of relief from the pain and other symptoms but that's just not the case.

I'm looking forward to going back home for Thanksgiving this week to spend some time with the family and relax a bit. Hopefully the drive goes smoothly and the visit goes smoothly. I know I will suffer after the turkey and trimmings but I will eat them anyway and try not to stress too much about anything.

I've decided that I will try one more injection on Monday. If things don't improve after that one it's time to call the doctor. Enough's enough.

Aaaaaaaarrrrggggghhhh!

I'm so irritated and frustrated and angry! I thought the Humira was working. I suppose I'm being punished for getting my hopes up.

I have had one of the worst weeks ever. It all started with the giantest migraine ever on Sunday and went downhill from there. I'm back to not being able to eat anything without having to run to the bathroom but, this week, the trips to the bathroom are accompanied by pain like I've never had before - horrible, crampy pain that sometimes turns into burning then stabbing pain. Just in case that wasn't enough for me to deal with, I'm blessed with daily headaches that seem to get really intense in the afternoon then either go away, or don't. Also, although I'm not taking any meds orally, I am having nausea like I haven't had since I was on 10 pills/day.

I don't know what's going on in there. My doctor wants to wait a few more weeks to make sure the Humira is working. I'm so over it.

Huge Pain In The A..

Today was incredibly discouraging. I wasn't feeling great when I got up but I left for work anyway. Halfway to the office I started having some pain which could mean disaster or could just be some pain. There's no telling. I was in between train stops when it got really intense. I've been sick every day for a long time now but the pain was always dull and achey (thank goodness) until recently. Today it was burning, stabbing pain that almost brought me to my knees on the train. I spent the next ten minutes trying to stay upright and devise a plan. When the train finally stopped, I got off to seek refuge (a bathroom).

Anyone who has had an attack in an inopportune location knows the minutes until you get to a bathroom are the longest minutes since the beginning of time. Here, in New York, there is an added element of anxiety because there are guards at ever door, locks on every bathroom and rules regarding who can access the key. I quickly found a clean (bonus!) bathroom and snuck into it. I spent eons inside as I still had a 15 minute ride to work from the bathroom and wanted to make sure I would make it alive. Eventually I made it back to the train and then to the office.

I tried not to let my crappy morning ruin the rest of the day but the pain and exhaustion had other plans and the day was pretty much a write-off. The headache came in the afternoon and has yet to leave.

I've noticed an increase in the intensity of my pain since I started Humira. I am wondering if this indicates a narrowing of the intestine somewhere in there but the liquid nature of my -you know- made it easy for it to pass through. Now that the nature of my -you know what- is no longer always liquid, it's causing horrible pain. Anyone?

Headaches

Last night I had my fifth Humira injection. They've been going pretty well so far. I find it fairly easy to inject in my leg and I only had a problem once - I think I moved after the needle went in. It hurt. A lot.

The Humira is definitely helping some. I'm on week eight so I'm assuming the medicine is at full power by now. I only have diarrhea four or five times a week now (as opposed to four or five times a day) and, although I still am having pain, it's not as often. My stomach still swells to six-months-pregnant after I eat and I'm still not feeling confident enough to eat while I'm at work, but I'm getting there.

The only thing I've noticed is that I seem to get a headache a day or two after my injection. The headache lasts a few days but it's manageable. My doctor doesn't seem to think it's a problem so I guess I'll wait it out for a while.

This weekend, however, I had an awful migraine. It was the day before my injection so I don't think it was Humira related. I felt really nauseous the night before but went to bed without thinking much of it - I'm always nauseous. The next morning I woke up to ringing ears and a slight headache. I decided the best thing to do was to go back to sleep. The next time I woke up the light was bothering me and my ears were still ringing but the headache wasn't any worse. A few hours later though I had to get back in bed. I was shaky and nauseous and my head was really killing me. Soon I was in so much pain I couldn't bear it. I have literally not been in that much pain in my life. I had the blind spots and everything. By the time it was over I was completely wiped out and felt exhausted the entire next day.

I've had lots of really bad headaches since I've been sick but nothing to this degree. I have been traveling and entertaining guests and not eating right lately. I've also been a little more stressed out than usual and I'm hoping that was the cause of the migraine. I'm going to try to relax and eat better (at least until Thanksgiving) and see how it goes.

I'm having some trouble finding information connecting headaches/migraines to Crohn's. Does anyone else have headache issues?

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...

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.

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.

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.

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.

Immunosuppressants

6-MP

The next step was to try to suppress my immune system and, hopefully, get the Crohn's under control. I started 6-MP aka Mercaptopurine aka Purinethol soon after the capsule endoscopy. About a month after I started I began to see improvements. If I ate three meals in one day I was in the bathroom four or five times instead of eight or nine. If I didn't eat three meals my bathroom trips were down to one or two. Best of all, there was one day every week or two when I wouldn't even make one trip to the bathroom.

I did not, however, see any improvements in my arthritis symptoms or fatigue. In fact, the fatigue became significantly worse. I didn't realize it at the time but I was in a fog for close to eight months. I don't know how I made it through. I woke up in the morning and was sometimes physically unable to find the strength to get out of my bed. My one-block walk to the subway left me drained and short of breath. I spent most of my day trying to gather up the energy to complete the simplest tasks at work. Getting to work and back home left me so exhausted that I couldn't do anything else. I spent at least one day each week sleeping. I was a zombie.

I was on 6-MP for eight months because it seemed to help in the beginning. At least I was seeing some results. We tried increasing my dose until I maxed out. Then we added Entocort and finally Pentasa. I guess neither I nor my doctor wanted to give up on it. Then I got sick.

I had a slightly sore throat Thursday evening. On Friday, I called my doctor. He told me to stop the 6-MP and call him on Monday if it didn't get any better. By Monday I couldn't talk. I took every cold medicine I could get my hands on and I still couldn't sleep. My throat was so raw that the mere act of inhaling made me cough. I started an antibiotic on Monday and felt better immediately.

The day after I finished the antibiotic the sore throat returned. Thankfully, I hadn't restarted my 6-MP. My doctor was on vacation and I was halfway across the country for a wedding. The day I returned to New York, I saw another doctor in the practice. He thought it would be a good idea to see an ear, nose and throat doctor just to make sure it was nothing to worry about. The specialist decided it was nothing to worry about. I finished a Z-Pak and all was well.

In fact, I was feeling so much better that I was thinking twice about restarting the 6-MP. Two weeks after I had gotten sick I breezed through a huge pile of work that had been accumulating on my desk for months. I could walk to the train without needing a nap. It was fantastic. Of course all of this new found energy came with a price - my Crohn's symptoms were as bad as ever. I put in a call to the doctor.