Author Topic: Disease Thread  (Read 1990 times)

0 Members and 1 Guest are viewing this topic.

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Disease Thread
« on: July 01, 2021, 12:24:17 AM »
Hey guys,

So I'm starting this thread because the core group of us are getting older, which sucks major ass.

I made mention a few weeks ago about a chronic disease I was diagnosed with. It's not contagious, it's not life threatening, but it is chronic, very painful, and takes a major toll on your overall health. So... I have Hidradenitis Suppurativa, a chronic skin disease that is extremely painful and has no cure, and extremely limited treatments options.

There is a better treatment that just came out a few years ago, Humira, that has been good, but it's super expensive. Hoping I don't get to that level.

I know this is a new kind of openness thread but I am tired of hiding this kind of thing.

More info: https://www.hsconnect.org/

So, my insurance doesn’t cover name brand drugs. My daughters neurologist prescribed her a medication that doesn’t have a generic yet.  He gave me a coupon for 50% off.  Take it in to be filled and the pharmacy says that will it be $537.  Oh, but I have a coupon and they tell me that’s the price after the coupon.

So, the drug company has some program you can enroll in for discounted pricing. So, I ended up getting it for $340.  So, $340 a month every month, forever.


Sent from my iPhone using Tapatalk
I was recently diagnosed with a pretty rare disease. I’m fine but it’s a chronic condition that could get worse over time, and there is no cure. I started the first kind of treatment for it, but if this doesn’t work there is a much better treatment, and really the only treatment. It’s $20k a year…..:blank:


(Want to get rid of the ad? Register now for free!)
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline stunted

  • Pak'r Élitaire
  • ****
  • Posts: 5000
    • View Profile
Re: Disease Thread
« Reply #1 on: July 01, 2021, 12:55:37 AM »
sorry to hear that you are suffering from it. sounds like a huge pain to go through. i don't know the economics behind it but pretty bullshit drugs cost that much. wishing you the best.

Offline pissclams

  • Global Moderator
  • Pak'r Élitaire
  • *****
  • Posts: 44616
  • (worst non-premium poster at goEMAW.com)
    • View Profile
Re: Disease Thread
« Reply #2 on: July 01, 2021, 08:24:05 AM »
sorry to hear, tbt


Cheesy Mustache QB might make an appearance.

New warning: Don't get in a fight with someone who doesn't even need to bother to buy ink.

Offline steve dave

  • Global Moderator
  • Pak'r Élitaire
  • *****
  • Posts: 82418
  • Romantic Fist Attachment
    • View Profile
Re: Disease Thread
« Reply #3 on: July 01, 2021, 08:59:37 AM »
that sucks tbt. hope you can find a way to treat it so it doesn't negatively impact your life too much.

Offline Rage Against the McKee

  • Pak'r Élitaire
  • ****
  • Posts: 35724
    • View Profile
Re: Disease Thread
« Reply #4 on: July 01, 2021, 09:00:21 AM »
That's awful. I would probably look into immigration if I were faced with that.

Offline 420seriouscat69

  • Don't get zapped! #zap
  • Wackycat
  • Pak'r Élitaire
  • ****
  • Posts: 63922
  • #1 rated - gE NFL Scout
    • View Profile
Re: Disease Thread
« Reply #5 on: July 01, 2021, 09:08:31 AM »
Sorry to hear, bud. What's it feel like?

Offline sonofdaxjones

  • Pak'r Élitaire
  • ****
  • Posts: 46800
    • View Profile
Re: Disease Thread
« Reply #6 on: July 01, 2021, 09:54:16 AM »
https://www.humira.com/humira-complete/cost-and-copay

From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked.  One of these programs saved me thousands a few years back.   I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad.    Even when the insurance company finally approved it, it only knocked 30% off.   

It's worth a shot.


Offline Cire

  • Pak'r Élitaire
  • ****
  • Posts: 18171
    • View Profile
Re: Disease Thread
« Reply #7 on: July 01, 2021, 10:11:33 AM »
Sorry DBT

Any word on how much time is left before generics are available?


Sent from my iPhone using Tapatalk

Offline nicname

  • Pak'r Élitaire
  • ****
  • Posts: 14033
  • Deal with it.
    • View Profile
Re: Disease Thread
« Reply #8 on: July 01, 2021, 10:59:37 AM »
Here is to you being able to keep it under control mainly thru dieting and exercise DBT. It sounds a lot like (but worse) than psoriasis, which is also treated by Humira and a host of other drugs.

Aside from the cost, many of the drugs used to treat these things have scary (imo) potential side effects.

I’ve had psoriasis for about 12 years, and have been lucky enough to keep it relatively mild, and relegated to mostly my knees and elbows w/out drugs. Adding the pain and lumps of HS is a whole other level that I hope you don’t or soon won’t have to deal with.

Here is to you keeping or getting this thing confined to being a mild annoyance thru the right mix of meds and healthy living.
If there was a gif of nicname thwarting the attempted-flag-taker and then gesturing him to suck it, followed by motioning for all of Hilton Shelter to boo him louder, it'd be better than that auburn gif.

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #9 on: July 01, 2021, 01:49:39 PM »
Thanks guys. I have been dealing with this for several months but finally went to the dr because I couldn't take it anymore. It has helped just telling people so they know what I'm actually going through. Don't feel like I'm hiding something in plain sight. Also has helped me mentally come to the realization that I'll probably deal with this for the rest of my life.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #10 on: July 01, 2021, 01:49:50 PM »
Sorry to hear, bud. What's it feel like?

Like having an open wound and moving around with it. Best description is a very strong burning pain.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #11 on: July 01, 2021, 01:52:30 PM »
https://www.humira.com/humira-complete/cost-and-copay

From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked.  One of these programs saved me thousands a few years back.   I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad.    Even when the insurance company finally approved it, it only knocked 30% off.   

It's worth a shot.

Sorry DBT

Any word on how much time is left before generics are available?


Sent from my iPhone using Tapatalk

Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.

As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline 420seriouscat69

  • Don't get zapped! #zap
  • Wackycat
  • Pak'r Élitaire
  • ****
  • Posts: 63922
  • #1 rated - gE NFL Scout
    • View Profile
Re: Disease Thread
« Reply #12 on: July 01, 2021, 01:55:44 PM »
Sorry to hear, bud. What's it feel like?

Like having an open wound and moving around with it. Best description is a very strong burning pain.
Damn.  :frown:

Offline pissclams

  • Global Moderator
  • Pak'r Élitaire
  • *****
  • Posts: 44616
  • (worst non-premium poster at goEMAW.com)
    • View Profile
Re: Disease Thread
« Reply #13 on: July 01, 2021, 02:05:13 PM »
imo unless it gets really bad, don't take the pills that could lead to an infection on the skin of the perineum


Cheesy Mustache QB might make an appearance.

New warning: Don't get in a fight with someone who doesn't even need to bother to buy ink.

Offline Spracne

  • Point Plank'r
  • Pak'r Élitaire
  • *
  • Posts: 17224
  • Scholar/Gentleman, But Super Earthy/Organic
    • View Profile
Re: Disease Thread
« Reply #14 on: July 01, 2021, 02:17:33 PM »
https://www.humira.com/humira-complete/cost-and-copay

From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked.  One of these programs saved me thousands a few years back.   I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad.    Even when the insurance company finally approved it, it only knocked 30% off.   

It's worth a shot.

Sorry DBT

Any word on how much time is left before generics are available?


Sent from my iPhone using Tapatalk

Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.

As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.

Do you have a phobia of needles? Unless you do, I think you'll find that giving yourself the bi-weekly injection is nbd.

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #15 on: July 01, 2021, 02:38:30 PM »
https://www.humira.com/humira-complete/cost-and-copay

From personal experience, even those making good incomes can qualify for direct drug company discounts with very few questions asked.  One of these programs saved me thousands a few years back.   I could have paid it, but it would have been a hit at the time to suddenly have an out-of-pocket expense of another $1,000 plus a month with a single stroke of the prescription pad.    Even when the insurance company finally approved it, it only knocked 30% off.   

It's worth a shot.

Sorry DBT

Any word on how much time is left before generics are available?


Sent from my iPhone using Tapatalk

Will look into this. So Humira has been out for a long time to treat RA but it was only approved for HS in 2015, so idk when a generic would come out. It's also only available in a bi-weekly injection, so would have to give myself a shot every 2 weeks.

As far as the cost I'm going through the "recommended" treatment plan and it's basically just to show the insurance company that I tried all options before maybe needing Humira. So will get them on board more for paying for it.

Do you have a phobia of needles? Unless you do, I think you'll find that giving yourself the bi-weekly injection is nbd.

No I don't. I used to give plasma twice a week for years in college. I have to watch any shot I get too.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline stunted

  • Pak'r Élitaire
  • ****
  • Posts: 5000
    • View Profile
Re: Disease Thread
« Reply #16 on: July 01, 2021, 02:59:52 PM »
use an insulin needle and it'd be no sweat.

Offline Kat Kid

  • Global Moderator
  • Pak'r Élitaire
  • *****
  • Posts: 19771
    • View Profile
Re: Disease Thread
« Reply #17 on: July 01, 2021, 03:55:32 PM »
Sorry to hear bud, hoping you find some comfort and relief.

Online star seed 7

  • hyperactive on the :lol:
  • Pak'r Élitaire
  • ****
  • Posts: 59985
  • good dog
    • View Profile
Re: Disease Thread
« Reply #18 on: July 02, 2021, 03:02:13 PM »
Maybe gE can chip in for one of those pain med masks bane wears in the dark knight rises? I think tbt could pull off that look.
Hyperbolic partisan duplicitous hypocrite

Online MakeItRain

  • Pak'r Élitaire
  • ****
  • Posts: 41325
    • View Profile
Re: Disease Thread
« Reply #19 on: July 02, 2021, 03:10:57 PM »
Sorry to hear, bud. What's it feel like?

Like having an open wound and moving around with it. Best description is a very strong burning pain.

crap.

Offline 8manpick

  • Pak'r Élitaire
  • ****
  • Posts: 18944
  • A top quartile binger, poster, and friend
    • View Profile
Re: Disease Thread
« Reply #20 on: July 02, 2021, 11:09:44 PM »
Yikes, sorry TBT. Here’s hoping for better and cheaper treatments on the horizon.
:adios:

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #21 on: August 16, 2021, 11:57:12 PM »
Guys, it hasn’t been good recently. Have a dr appointment a week from today and hoping can move forward with something else.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline stunted

  • Pak'r Élitaire
  • ****
  • Posts: 5000
    • View Profile
Re: Disease Thread
« Reply #22 on: August 19, 2021, 07:34:54 AM »
What will you be trying next? How many more steps to humira? Hope bitcoin is easing the pain.

Offline DaBigTrain

  • Pak'r Élitaire
  • ****
  • Posts: 9485
  • stuxnet, meltdown, spectre, Bitcoin, ffChamp
    • View Profile
Re: Disease Thread
« Reply #23 on: August 19, 2021, 12:01:02 PM »
What will you be trying next? How many more steps to humira? Hope bitcoin is easing the pain.

There is some steroid treatment that I had at my last DR appointment that helped, but they can only do it about once a month. It is literally injecting the whole area, mm by mm with a steroid, it's very painful but it did help a lot last time. So maybe do that again but I'm not sure next steps, hoping to find out at this appointment.
"The Times 03/Jan/2009 Chancellor on brink of second bailout for banks"

https://blockstream.info/block/000000000019d6689c085ae165831e934ff763ae46a2a6c172b3f1b60a8ce26f

Offline stunted

  • Pak'r Élitaire
  • ****
  • Posts: 5000
    • View Profile
Re: Disease Thread
« Reply #24 on: August 20, 2021, 02:31:48 AM »
Damn. Is there any part of this that doesn't sound completely awful.