I'm officially on Humira now. A part of me is sad I couldn't find relief naturally... but I'm already getting over it. I'll still pursue healthy options in my diet and other non-pharmaceutical options because they are simply the right thing to do overall and in the long run. Really hoping this puts me into remission and I can broaden my diet options. Somethings I'll never be able to reintroduce like most dairy or stupid amounts of sugar. It would be nice though to be able to join in most meals with my family and relieve a lot of that pressure and stress from my wife. Just because I started these meds doesn't mean I'm all better. Best case scenario is in 4 weeks I should see significant improvement but it could take longer. In the mean time I'm still very inflamed thus all the natural methods will aid in ensuring I'm getting proper nutrition.
I'm still loosing weight which is a little scary. Down to 159, was at 161 my last office visit, and 163 the time before that. I'm really hoping the milk kefir helps me absorb nutrients better. That's kind of the whole point of it so we'll see. I'll get into that in another post though.
Humira is a self-administered injected drug. Went in to the GI and they have a physicians assistant show you how the auto injector pens work. They answer all your questions, show you how to do it, and then you do it. I'm a super big wuss when it comes to needles so this is a big deal. My wife says I'm worse than the kids when it's time for our flu shots! She's pretty much right. However these auto injectors are pretty fool proof. Just hold it properly, push the button, hold everything tight until it goes yellow... done! Man it hurts but only for like 15 seconds.
Gave myself two injections at the doctors office. Then two more before bed. At the office I administered them into my belly but that night I did the leg. I think the leg is better. Holding the pen against your belly properly is awkward and later that day when laughing it made it sore. So far no real soreness in my legs and holding the pen was much easier. I don't think either location hurt less.
Tuesday, November 25, 2014
Saturday, November 22, 2014
Emotional Rollercoaster
Met with the new GI I was ranting about two posts ago. My wife was there this time. It went much better this visit. If I had to guess it was that she was having a... better day... I was having a better day... and I let her do most of the talking. Very rarely have I found specialists open to discussion or challenges. Last visit was the last visit on a Friday; I'm thinking that had a part in all of this. Anyway; lets not dwel on that.
She explained the different 'paths' you take with pharmacuticals. This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.
Path one was what I was on and it's not working. You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission. Typically start with salfasalazine or a mesalamine like Lialda orAsacol Apriso. (Asacol is no longer available)
An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids. Get you into remission. Then get you on a meslamine or immune suppressant like 6MP
When immune suppressants like prednisone and 6MP don't work you have to go down a different path. These are pretty severe cases like cronic ulcerative pancolitis. None of the above seems to work, you're constantly inflamed and suffering from symptoms. That's where I'm at. Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.
Next path is 'biologics'. These are intravenous drugs that both get you into remission and maintain it. There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab. Some are self administered injections and other's are "infusions" done at a clinic via an IV. These things are crazy expensive and I'm about to start on Humira.
So I was perscribed Humira. I go to my perscription drug provider and it takes me a few days just to figure out this:
Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738
Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465
Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses). Now almost all of the manufacturers of these drugs have some sort of assistance program. Some are better than others and they all have different requirements and procedures for getting approved. There are also programs out there affiliated with churches and other non-proffits to help. We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.
Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.
My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!
So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday. That's when I go in and learn how to give myself the shot.
If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.
REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!
Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P
On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!
I've looked into other drugs they wanted me to take too. They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.
Monday I take my first doses. I start at a high dose then over the coming weeks I taper down to a maintenance dose. This should get me into remission and then keep me there. We're all praying this works. I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet. Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again. This December it will be a year of constant flare up symptoms.
She explained the different 'paths' you take with pharmacuticals. This is why I really like her; she explains these things where other GI's are just like "here, take this..." without saying why or what the next step is or explaining the pathway.
Path one was what I was on and it's not working. You flare up, you take predinsone, you get into remission, and they figure out which pill will keep you in remission. Typically start with salfasalazine or a mesalamine like Lialda or
An offshoot of that path is if you're having a very bad flare, like you end up in the hospital, they put you on IV steroids. Get you into remission. Then get you on a meslamine or immune suppressant like 6MP
When immune suppressants like prednisone and 6MP don't work you have to go down a different path. These are pretty severe cases like cronic ulcerative pancolitis. None of the above seems to work, you're constantly inflamed and suffering from symptoms. That's where I'm at. Salfasalazine stopped working, predinsone stopped working, and there's no real point in even trying meslamines as it's all down that same path... won't work.
Next path is 'biologics'. These are intravenous drugs that both get you into remission and maintain it. There's Humira, Remicade, Cimzia, Tysabri, and a new one about to come out Vedolizumab. Some are self administered injections and other's are "infusions" done at a clinic via an IV. These things are crazy expensive and I'm about to start on Humira.
So I was perscribed Humira. I go to my perscription drug provider and it takes me a few days just to figure out this:
Humira Starter Kit:
Total $10,126
Approved Amount $8,692
After Deductible is met (20%) $1,738
Humira monthly 40mg pens
Total $2,987
Approved Amount $2,471
After Deductible is met (20%) $465
Thankfully I've hit my deductible this year (which is kinda crazy itself.. we've spent many, many, thousands of dollars on direct and indirect medical expenses). Now almost all of the manufacturers of these drugs have some sort of assistance program. Some are better than others and they all have different requirements and procedures for getting approved. There are also programs out there affiliated with churches and other non-proffits to help. We spent many, many, days trying to navigate them, figure out a path to pay for this, and it's a logistical nightmare.
Humira Protection Plan is the assistance program for Humira and pays up to $2,000 for the starter kit and $700 per month. I'm registered for 5 years on the plan.
My provider does not accept the Humira Protection Plan card; you have to check with your provider to find out. They will accept it next year starting JAN 1 but won't accept it early. However my deductible resets JAN 1 so taking $2,000 off $8,692 doesn't exactly make it affordable. They are pretty much asking me to buy a car and then take on another mortgage payment for the rest of my life!
So I called Humira back for like the 10th time and they said they have a reimbursement plan for just such things. It's a totally separate process but the same numbers... $2,000 then $700/mo. However I have to order Humira, pay out of pocket, send them in a bunch of info, and they will reimburse me. I ordered the starter kit and received it yesterday. Filled out all the paper work and submitted it yesterday. Still waiting to hear back from them but at least I got the meds and I'm ready for Monday. That's when I go in and learn how to give myself the shot.
If this all works as it's been explained... My provider will start accepting the Humira protection plan card JAN 1 2015. So starting next year I *should* get $700 off the price per month. So the first month will cost me $1,771. Next month will cost $1,771 BUT I hit my deductible at $2,500 so I'll only pay 20% of the remainder... so like $145? That would then mean the following month would be $465 but the Humira protection plan should cover that. Still a lot of money to spend right at the beginning of the year but at least we can manage this somehow.
REALLY hoping this financing all works the way it sounds! Oh... and that this drug actually works =P No garuntees on either!
Anyway... we've all shed more than a few tears figuring this all out. The blood recently is probably a reflection of my stress. I've been on the phone for hours every day for a week trying to figure this all out meanwhile still do my job and be productive at home. Nobody on the phone can give you a freak'n straight answer (except the Humira people, they are awesome, but they don't know the details of my provider). After all this... I think peoples opinion on "big pharma" should be re-evaluated! I'm so mad at my prescription drug provider! They are doing very little to really help me, the people on the phone are usually incompetent or borderline rude, I hate their strong-arm tactics to compel you to use THEIR pharmacy, and I get transferred no less than 3 times every time I call in and they all ask the same damn questions! My provider won't allow my local pharmacy to prescribe me 90 supplies of anything. If I want a 90 day supply I have to order through THEIR pharmacy. Ya know what? A) I want to support my local pharmacy and B) I won't order from them out of spite now =P
On the other hand... Humira has gone well out of their way to help people like me, I call in to a phone number and after 3 clicks I'm talking to a real person, they know WTF they are talking about, very professional, and actually help me!
I've looked into other drugs they wanted me to take too. They are all this damn expensive, some more, some a little less, but none of them affordable. I've pursued a few of them and the 'discount' plans either don't take enough off to make it affordable or my damn provider wouldn't accept them. I never understood how people could ever choose between their prescriptions and their needs... I get it now... I totally see how that's a reality for many people. I had no idea how expensive this stuff is until I was faced with it.
Monday I take my first doses. I start at a high dose then over the coming weeks I taper down to a maintenance dose. This should get me into remission and then keep me there. We're all praying this works. I do intend to keep pursing some natural regiments to help promote good health and healing however I truly hope to get into remission and enjoy a more broad diet. Most of all... I'm sick of being sick... and ready to rediscover what "normal" is again. This December it will be a year of constant flare up symptoms.
Sunday, November 9, 2014
Kefir and Prednisone
Symptoms are getting stronger again. If I had to guess it was a few days after dropping the dosage of the hydrocorisone suppositories from 2 a day to 1 a day... but it's just a guess. It's funny... I was actually starting to feel better a couple weeks ago, I messaged my GI saying I was marginally better but not where I want to be, and then like the next day... bam... back to blood and urgency. Msg'd her again and she prescribed prednisone again. Starting at 40mg and tapering from there every week. Hasn't gotten any better and in some ways worse. Passed a lot of blood the last 2 days.
I'm pretty excited to ferment my own kefir and try that. You soak these 'kefir grains' in milk or water and let it ferment a day or three. Then you drink it. I know... sounds crazy right? It's really not. People have been fermenting food and drinks for centuries. One I'm sure you've heard of and even ate is sour kraut.
The 'grains' are actually microrganisims and their food which is just sugar and yeast. It's not like an wheat or corn grain. It's a little colony of probiotics. When you ferment your kefir they multiply, feeding on the sugar in the liquid, breaking down compounds into more simple elements. You're left with a super food packed full of live probiotics, amino acids, and other vital nutrients.
I'm going to start with almond milk kefir. I will try regular milk kefir soon though. However I have to ferment it longer to make sure all the lactose is consumed. See the bacteria feeds on the sugar, which in milk is the lactose, so if you let them fully mature they consume almost all of the lactose. Even if you're lactose intolerant like myself you can drink milk kefir.
Meeting with my GI again on Monday. Yeah; the one I complained about last time. I know she won't have anything I want to hear... just going to push the next class of drugs I can't afford; Remicade and Humira.
I'm pretty excited to ferment my own kefir and try that. You soak these 'kefir grains' in milk or water and let it ferment a day or three. Then you drink it. I know... sounds crazy right? It's really not. People have been fermenting food and drinks for centuries. One I'm sure you've heard of and even ate is sour kraut.
The 'grains' are actually microrganisims and their food which is just sugar and yeast. It's not like an wheat or corn grain. It's a little colony of probiotics. When you ferment your kefir they multiply, feeding on the sugar in the liquid, breaking down compounds into more simple elements. You're left with a super food packed full of live probiotics, amino acids, and other vital nutrients.
I'm going to start with almond milk kefir. I will try regular milk kefir soon though. However I have to ferment it longer to make sure all the lactose is consumed. See the bacteria feeds on the sugar, which in milk is the lactose, so if you let them fully mature they consume almost all of the lactose. Even if you're lactose intolerant like myself you can drink milk kefir.
Meeting with my GI again on Monday. Yeah; the one I complained about last time. I know she won't have anything I want to hear... just going to push the next class of drugs I can't afford; Remicade and Humira.
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