7 ms·

Unfortunately, few months ago, my gf who is in her very early 30s, was diagnosed with RA. She was immediately placed on the very expensive medication - $5000/mo

Unfortunately, few months ago, my gf who is in her very early 30s, was diagnosed with RA. She was immediately placed on the very expensive medication - $5000/month (you read it right, a month). It helps a lot, but not 100% effective and we don't know how it will work long term. We are hoping, that some new treatment might be available in the future.

Rimintil 3y ago
That's cheap. $12K/month for two self-administered biologic injections.
- newprint 3y ago
  for RA ?
  - cellularmitosis 3y ago
    That’s probably Humira, so RA, Crohn’s or UC. Many of the immunomodulator drugs are in a similar price range.
    - spondylosaurus 3y ago
      Praying for generic adalimumab to finally hit the US market. People overseas have been getting this stuff for a hundred bucks a pop for years now, but AbbVie's done everything in their power to extend the US patent for as long as possible. They'd milk us forever if they could.
      - paddim8 3y ago
        Mine cost about 350€ or so for 6 pens. I only pay 240€ a year though.
  - alistairSH 3y ago
    Yup. Family member is on Remicade. It's administered in two doses (IV infusions) every 4 months, so 6 treatments/year. And retails for something like $12k/treatment. And many insurance companies have removed it from their list of preferred drugs due to the cost, leaving patients to fight for medically necessary treatment. It's a fucking nightmare (as if RA on it's own isn't bad enough).
    - sparkie 3y ago
      My body created an antibody to infliximab after about 6 months of treatment and I had a bad reaction to it. 6 months of expensive treatment wasted. Doc replaced it with Azathioprine, a cheap generic, and I've had no major flare-ups of UC in 6 years. If I have minor symptoms (usually triggered by certain foods), I also take mesalazine, but once I am in remission I can do without the mesalazine. If I withdraw from AZA when I am in remission, minor symptoms typically return after around 3 months, but subside after I resume taking the AZA for a couple of months. I can retain remission doing 3 months on, 3 months off. Use of Azathioprine is still controversial for treatment of UC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7034525/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7034525/ I have no noticeable side-effects from taking Azathioprine.
- bernardlunn 3y ago
  [flagged]
  - skyyler 3y ago
    Please hesitate before offering medical advice to strangers next time.
    - lostlogin 3y ago
      Was that advice even ‘medical’?
      - more_corn 3y ago
        Yes
        lostlogin 3y ago
        Any chance of a paper or something?
        skyyler 3y ago
        What are you even asking for?
        lostlogin 3y ago
        I don’t believe it’s a treatment. If I’m wrong I’d like to know.
  - ekianjo 3y ago
    Yes and fasting does not cure RA
    - francisofascii 3y ago
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8359474/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8359474/
shswkna 3y ago
My sister had RA in her early twenties. For years no treatment was able to restore a reasonable quality of life. There were many side effects which needed treatment as well. She went from doctor to doctor, while she lost the best parts of her life. An unexpected path led her to a tropical diseases doctor who had positive results with RA patients by using an unconventional treatment not supported by mainstream medicine at the time: He tested the patients blood for bacteria (by cultivation in a lab) and prescribed an antibiotic course that matched the detected bacteria. This treatment (testing + prescribing antibiotic)was repeated in regular intervals over the course of a whole year. Her RA flare-ups stopped and recurred only in ever longer intervals which were arrested by this treatment. After a year the progression of the RA had stopped. This treatment is controversial because it is considered bad practice to prescribe antibiotics liberally, for several good reasons. Mainstream medicine did not have a theoretical foundation to justify this treatment path. The tropical disease doctor founded his treatment on the empirical research by some research factions that the “auto-immune” theory of RA was not showing the full picture.
- toast0 3y ago
  > This treatment is controversial because it is considered bad practice to prescribe antibiotics liberally, for several good reasons. Mainstream medicine did not have a theoretical foundation to justify this treatment path. This doesn't seem like prescribing antibiotics liberally to me? Having symptoms, test for bacterial infection, prescribe antibiotics seems reasonable to me with no medical training. I would consider liberal prescription to be something like prescribing antibiotics based on symptoms that align with viral infection, without doing any labs to determine the type of infection and hoping for the best.
  - deleted 3y ago
    [deleted]
- hbarka 3y ago
  > and prescribed an antibiotic course that matched the detected bacteria Interesting. Can antibiotics be matched to that level of specific targeting?
eklavya 3y ago
My friend has RA, after being on medication for years where he would have nausea for at least a week every month. He stopped taking any medication altogether. He goes to Gym twice a day and keeps a strict diet (relaxed at times). He is way better since the last 4 years.
- eastof 3y ago
  I also have RA and have the exact same experience. I really wish doctors would actually present lifestyle changes as an alternative treatment. Sure if flares every once in a while but my feet are super strong now with barefoot running & slacklining and I hardly even notice it anymore when I'm moving.
softfalcon 3y ago
I feel for you. We're in the same boat. My wife is a similar age and also has to finaggle her way around these ludicrously expensive RA medications. I also really hope a new treatment will arrive before this one either stops working or we become incapable of affording it.
eastof 3y ago
I know I already posted in another comment but how active is she? I was diagnosed in my 20s and at first it was a real atruggle to get out of bed. After initial rounds of steroids/TNF blockers, I really started to focus on strengthening my affected joints and it has quite literally been a miracle cure for me. Nothing too crazy at first either, mine is in my feet so just lots of yoga and walking a couple miles or so a day did it for me.
- Namari 3y ago
  It is true that it helped me when I went to gym, it hurt at first but got a lot better within 2 weeks. Could be just coincidence but now I've stopped the pain is coming back.
MrFantastic 3y ago
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682732/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682732/ Both groups observed significant decrease in disease activity score (DAS) (p < 0.001). Significantly higher decrease in pain in fasting group on seventh day (p = 0.049). No significant difference was observed in total fatty acid profile, butyrate and propionate but acetate increased significantly (p = 0.044) in fasting group and decreased significantly in MD group.
ww520 3y ago
There're generic versions of the drug coming to market. Amjevita from Amgen is bio-similar to Humira and just got FDA approved. It costs about half at retail. As more generic versions of the anti-TNF biological drugs coming online, the price should be driven down.
- ekianjo 3y ago
  Not generics. Biosimilars is the correct name for them.
  - ww520 3y ago
    Just curious, what's the difference? I thought the patents have expired and other companies have started to clone the drug.
    - ekianjo 3y ago
      very large molecules (proteins) can't be exactly replicated. It's not something like aspirin with a barely a few atoms bundled together, those are very complex structures with very long chains and 3D hyperstructures that have a clear impact on their effect. So it's not easy to replicate exactly the protein done by another company, so what a biosimilar is, is an attempt at making proteins that have similar kind of folding and efficacy while not being strictly identical. That's why they are not generics.
      - ww520 3y ago
        I see. Thanks for the explanation.
      - gtuhdhvd 3y ago
        what do you mean can't be replicated? that's how they manufacture the drug. or do you mean cannot be made legally in the usa absurd copyright law where a company can simply deny licensing for medication?
josefresco 3y ago
My biologic (brand Xeljanz) prescription was $5000/month but was paid for 100% through a special program from my pharmacy/drug manufacturer (I'm still not 100% clear how). I had to stop because I was dealing with an infection, but I just wanted to share that because it's still new for you.

Rimintil 3y ago

That's cheap. $12K/month for two self-administered biologic injections.

newprint 3y ago
for RA ?
- cellularmitosis 3y ago
  That’s probably Humira, so RA, Crohn’s or UC. Many of the immunomodulator drugs are in a similar price range.
  - spondylosaurus 3y ago
    Praying for generic adalimumab to finally hit the US market. People overseas have been getting this stuff for a hundred bucks a pop for years now, but AbbVie's done everything in their power to extend the US patent for as long as possible. They'd milk us forever if they could.
    - paddim8 3y ago
      Mine cost about 350€ or so for 6 pens. I only pay 240€ a year though.
- alistairSH 3y ago
  Yup. Family member is on Remicade. It's administered in two doses (IV infusions) every 4 months, so 6 treatments/year. And retails for something like $12k/treatment. And many insurance companies have removed it from their list of preferred drugs due to the cost, leaving patients to fight for medically necessary treatment. It's a fucking nightmare (as if RA on it's own isn't bad enough).
  - sparkie 3y ago
    My body created an antibody to infliximab after about 6 months of treatment and I had a bad reaction to it. 6 months of expensive treatment wasted. Doc replaced it with Azathioprine, a cheap generic, and I've had no major flare-ups of UC in 6 years. If I have minor symptoms (usually triggered by certain foods), I also take mesalazine, but once I am in remission I can do without the mesalazine. If I withdraw from AZA when I am in remission, minor symptoms typically return after around 3 months, but subside after I resume taking the AZA for a couple of months. I can retain remission doing 3 months on, 3 months off. Use of Azathioprine is still controversial for treatment of UC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7034525/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7034525/ I have no noticeable side-effects from taking Azathioprine.
bernardlunn 3y ago
[flagged]
- skyyler 3y ago
  Please hesitate before offering medical advice to strangers next time.
  - lostlogin 3y ago
    Was that advice even ‘medical’?
    - more_corn 3y ago
      Yes
      - lostlogin 3y ago
        Any chance of a paper or something?
        skyyler 3y ago
        What are you even asking for?
        lostlogin 3y ago
        I don’t believe it’s a treatment. If I’m wrong I’d like to know.
- ekianjo 3y ago
  Yes and fasting does not cure RA
  - francisofascii 3y ago
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8359474/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8359474/

shswkna 3y ago

My sister had RA in her early twenties. For years no treatment was able to restore a reasonable quality of life. There were many side effects which needed treatment as well. She went from doctor to doctor, while she lost the best parts of her life. An unexpected path led her to a tropical diseases doctor who had positive results with RA patients by using an unconventional treatment not supported by mainstream medicine at the time: He tested the patients blood for bacteria (by cultivation in a lab) and prescribed an antibiotic course that matched the detected bacteria. This treatment (testing + prescribing antibiotic)was repeated in regular intervals over the course of a whole year. Her RA flare-ups stopped and recurred only in ever longer intervals which were arrested by this treatment. After a year the progression of the RA had stopped. This treatment is controversial because it is considered bad practice to prescribe antibiotics liberally, for several good reasons. Mainstream medicine did not have a theoretical foundation to justify this treatment path. The tropical disease doctor founded his treatment on the empirical research by some research factions that the “auto-immune” theory of RA was not showing the full picture.

toast0 3y ago
> This treatment is controversial because it is considered bad practice to prescribe antibiotics liberally, for several good reasons. Mainstream medicine did not have a theoretical foundation to justify this treatment path. This doesn't seem like prescribing antibiotics liberally to me? Having symptoms, test for bacterial infection, prescribe antibiotics seems reasonable to me with no medical training. I would consider liberal prescription to be something like prescribing antibiotics based on symptoms that align with viral infection, without doing any labs to determine the type of infection and hoping for the best.
- deleted 3y ago
  [deleted]
hbarka 3y ago
> and prescribed an antibiotic course that matched the detected bacteria Interesting. Can antibiotics be matched to that level of specific targeting?

eklavya 3y ago

My friend has RA, after being on medication for years where he would have nausea for at least a week every month. He stopped taking any medication altogether. He goes to Gym twice a day and keeps a strict diet (relaxed at times). He is way better since the last 4 years.

eastof 3y ago
I also have RA and have the exact same experience. I really wish doctors would actually present lifestyle changes as an alternative treatment. Sure if flares every once in a while but my feet are super strong now with barefoot running & slacklining and I hardly even notice it anymore when I'm moving.

softfalcon 3y ago

I feel for you. We're in the same boat. My wife is a similar age and also has to finaggle her way around these ludicrously expensive RA medications. I also really hope a new treatment will arrive before this one either stops working or we become incapable of affording it.

eastof 3y ago

I know I already posted in another comment but how active is she? I was diagnosed in my 20s and at first it was a real atruggle to get out of bed. After initial rounds of steroids/TNF blockers, I really started to focus on strengthening my affected joints and it has quite literally been a miracle cure for me. Nothing too crazy at first either, mine is in my feet so just lots of yoga and walking a couple miles or so a day did it for me.

Namari 3y ago
It is true that it helped me when I went to gym, it hurt at first but got a lot better within 2 weeks. Could be just coincidence but now I've stopped the pain is coming back.

MrFantastic 3y ago

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682732/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5682732/ Both groups observed significant decrease in disease activity score (DAS) (p < 0.001). Significantly higher decrease in pain in fasting group on seventh day (p = 0.049). No significant difference was observed in total fatty acid profile, butyrate and propionate but acetate increased significantly (p = 0.044) in fasting group and decreased significantly in MD group.

ww520 3y ago

There're generic versions of the drug coming to market. Amjevita from Amgen is bio-similar to Humira and just got FDA approved. It costs about half at retail. As more generic versions of the anti-TNF biological drugs coming online, the price should be driven down.

ekianjo 3y ago
Not generics. Biosimilars is the correct name for them.
- ww520 3y ago
  Just curious, what's the difference? I thought the patents have expired and other companies have started to clone the drug.
  - ekianjo 3y ago
    very large molecules (proteins) can't be exactly replicated. It's not something like aspirin with a barely a few atoms bundled together, those are very complex structures with very long chains and 3D hyperstructures that have a clear impact on their effect. So it's not easy to replicate exactly the protein done by another company, so what a biosimilar is, is an attempt at making proteins that have similar kind of folding and efficacy while not being strictly identical. That's why they are not generics.
    - ww520 3y ago
      I see. Thanks for the explanation.
    - gtuhdhvd 3y ago
      what do you mean can't be replicated? that's how they manufacture the drug. or do you mean cannot be made legally in the usa absurd copyright law where a company can simply deny licensing for medication?

josefresco 3y ago

My biologic (brand Xeljanz) prescription was $5000/month but was paid for 100% through a special program from my pharmacy/drug manufacturer (I'm still not 100% clear how). I had to stop because I was dealing with an infection, but I just wanted to share that because it's still new for you.