5 ms·

I got this last year, after being on oral meds for a while. One downside I was told is the risk of rejection/allergy to the medicine if treatments aren't given

I got this last year, after being on oral meds for a while. One downside I was told is the risk of rejection/allergy to the medicine if treatments aren't given regularly. On that side note- Pondering a mive to the US from the EU, how does one go about moving a medication regiment like this to avoid disrupting the schedule?

BlackFly 3y ago
Find a local doctor as soon as possible. The precise details will very much depend which country you go to in the EU. If you are moving with the help of a company, I would help their HR can help you with such details.
- John23832 3y ago
  They said the opposite direction, EU -> US. In my experience this makes things harder because of the way the US healthcare system is setup. Depending on/asking for help from an employer (if they are helping you move) is a good first step though.
c0g 3y ago
I’m originally from the UK, but it might still apply - it’s much more normal in the US to go straight to a specialist without a referral from a GP. If the company you’re moving with isn’t helpful you will probably be able to arrange directly with a GI doctor’s office with little effort. Edward Huang with PAMF is the guy I go to, if you’re moving to the bay area.
ensignavenger 3y ago
I have never made such a move, but here is what I would do at a minimum, having dealt with healthcare in the US a lot. I would make sure I qualify for health insurance through work immediatly on starting. If not, you may have to pay for a few months on a healtcare exchange plan, which will likely be expensive but provide bridge coverage. Get signed up immediately. Know whether or not you will need a refferal to visit a specialist. Bring copies of your medical records with you. If you can go straight to a specialist, find a GI doc, maybe one that other chrons patients in your new area recomend, if you can find anyone online or know anyone in your area. Otherwise, get setup with a primary care doc and see if they will prescribe the meds based on your medical records or reffer you out... it will depend on the doctor and their comfort with the meds and your issues if they will be willing to do this, so expect to be reffered to a GI specialist. Emphasize how urgent it is. Even if you go straight to a specialist, get setup with a primary care doc right away, too. Don't be afraid to change doctors or seek a second opinion. Bring as many doses of your current meds as you can with you. How quickly you can get in to see some one will depend on where you are in the US. Ask them to put you on a cancellations call list if your appointment is further out, they will sometimes call if they have a cancellation and you can get in earlier... depends on the practice. Emphasize with them when you talk to scheduling how urgent it is because you need to continue your meds. Be kind in all your interactions, and they can often find ways to work you in if they understand how urgent it is. Don't be afraid to call around to find a specialist with an earlier opening, even if you change specialists later becuase one is a better fit.
- tapland 3y ago
  Thank you! This was probably the most thorough answer I've gotten yet. Worst case I could fly home to get it (6 months until free care ends after moving away fromwhere I am now), and I could bring 3 months with me. This makes planning for an eventual move way easier.
_v8mn 3y ago
EDIT: not sure if the post was edited or I misread you… I was reading US -> EU For a move from US to EU without employment insurance (which may grant you coverage for existing issues), you will need to go through your state marketplace which is more expensive but should have plans that covers it (by law). Original text: I just did such a move from the USA to France. After seeing a specialist in the country, I got access to something called “ALD” (“affectation de longue durée” aka long term chronic issue). This grants me 100% coverage for anything related to my crohn’s, including surgeries and the drugs mentioned in this thread. Note that the drug itself is also capped at $500 per box of 2 pens due to French regulation on drug prices, vs $5000 without insurance in the U.S.). Disclaimer: I’m French American.
spondylosaurus 3y ago
Regarding the rejection, ask about low-dose methotrexate! It helps prevent your body from building up a resistance against those sweet, sweet monoclonal antibodies. I was hesitant at first thanks to how many MTX horror stories I've heard, but those dose is so small that I thankfully haven't experienced any side effects. Just 7.5mg once a week.
- atombender 3y ago
  The evidence here is actually very slim. There are some studies that show a mildly positive effect on drug survival, but of these, the longest studies have typically been only a year or less. A recent Dutch single-blind RCT (van der Kraaij et al. 2023 [1]) on adalilumab on psoriasis with/without methotrexate reported very favorable results after one year. However, when they their third-year update basically concluded that the effect was not real. As a counterpoint, many of their patients exited the study by the end of the third year (sometimes due to adverse events), and so at the end they had just 8 patients left in total. They use some statistical techniques to account for this, but I'm not a statistician and don't know if they make sense. Some commentary here [2]. As an aside, it's interesting that most studies typically look at ADA (anti-drug antibody) serum levels and not actually at clinical efficacy. A few studies do look at both. I'm inclined to think that it's better to be safe than sorry, but that's in spite of the evidence. Regarding MTX horror stories, there are some things one can do to prevent/alleviate side effects [3]. One thing that's not known by most doctors is that a lot of people (maybe as many as 40% of the U.S. population) have a genetic mutation that impacts the body's ability to activate folate. The MTHFR 667CT genotype reduces folate activity by about 35-40%, while having two copies of the mutation (677TT) reduces it by about 70-80%. Since MTX is a folate antagonist and folic acid is taken to counteract this, it means that for many people, the folic acid doesn't do its job. There are two alternatives (folinic acid and L-methylfolate), both widely available by prescription, that don't have this problem, and some rheumatologists swear by them. A formulation called Rheumate (L-methylfolate plus curcumin) was developed specifically for use with methotrexate. [1] https://pubmed.ncbi.nlm.nih.gov/37014287/ https://pubmed.ncbi.nlm.nih.gov/37014287/ [2] https://onlinelibrary.wiley.com/doi/10.1111/jdv.19282 https://onlinelibrary.wiley.com/doi/10.1111/jdv.19282 [3] https://rheumnow.com/content/dsb-managing-methotrexate-toxicity https://rheumnow.com/content/dsb-managing-methotrexate-toxic...
zdragnar 3y ago
I don't know how common this is, but for some Very Expensive Medications, drug manufacturers such as Lilly will run non-profit orgs that will help you get them dirt cheap if your insurance won't cover them. In my case, my dermatologist put me on Taltz straight away, skipping all of my insurance company's preferred first drugs because the complication rate was much lower. Even if my insurance company would have covered it, the co-pay would have been impossible to keep up with. However, with their other org covering the cost, I think I ended up paying something like $25 a dose for what was at the time several thousand dollars retail price. All of that is to say, if the health insurance plan your company has doesn't want to cover it, it might be worth reaching out to the manufacturer to see if they will help. At the very least, they may be able to recommend a US based specialist to get you a new prescription if the specialist pharmacies here don't respect a foreign prescription. Edit: here's the specific program I went through: https://www.taltz.com/savings-support https://www.taltz.com/savings-support

BlackFly 3y ago

Find a local doctor as soon as possible. The precise details will very much depend which country you go to in the EU. If you are moving with the help of a company, I would help their HR can help you with such details.

John23832 3y ago
They said the opposite direction, EU -> US. In my experience this makes things harder because of the way the US healthcare system is setup. Depending on/asking for help from an employer (if they are helping you move) is a good first step though.

c0g 3y ago

I’m originally from the UK, but it might still apply - it’s much more normal in the US to go straight to a specialist without a referral from a GP. If the company you’re moving with isn’t helpful you will probably be able to arrange directly with a GI doctor’s office with little effort. Edward Huang with PAMF is the guy I go to, if you’re moving to the bay area.

ensignavenger 3y ago

I have never made such a move, but here is what I would do at a minimum, having dealt with healthcare in the US a lot. I would make sure I qualify for health insurance through work immediatly on starting. If not, you may have to pay for a few months on a healtcare exchange plan, which will likely be expensive but provide bridge coverage. Get signed up immediately. Know whether or not you will need a refferal to visit a specialist. Bring copies of your medical records with you. If you can go straight to a specialist, find a GI doc, maybe one that other chrons patients in your new area recomend, if you can find anyone online or know anyone in your area. Otherwise, get setup with a primary care doc and see if they will prescribe the meds based on your medical records or reffer you out... it will depend on the doctor and their comfort with the meds and your issues if they will be willing to do this, so expect to be reffered to a GI specialist. Emphasize how urgent it is. Even if you go straight to a specialist, get setup with a primary care doc right away, too. Don't be afraid to change doctors or seek a second opinion. Bring as many doses of your current meds as you can with you. How quickly you can get in to see some one will depend on where you are in the US. Ask them to put you on a cancellations call list if your appointment is further out, they will sometimes call if they have a cancellation and you can get in earlier... depends on the practice. Emphasize with them when you talk to scheduling how urgent it is because you need to continue your meds. Be kind in all your interactions, and they can often find ways to work you in if they understand how urgent it is. Don't be afraid to call around to find a specialist with an earlier opening, even if you change specialists later becuase one is a better fit.

tapland 3y ago
Thank you! This was probably the most thorough answer I've gotten yet. Worst case I could fly home to get it (6 months until free care ends after moving away fromwhere I am now), and I could bring 3 months with me. This makes planning for an eventual move way easier.

_v8mn 3y ago

EDIT: not sure if the post was edited or I misread you… I was reading US -> EU For a move from US to EU without employment insurance (which may grant you coverage for existing issues), you will need to go through your state marketplace which is more expensive but should have plans that covers it (by law). Original text: I just did such a move from the USA to France. After seeing a specialist in the country, I got access to something called “ALD” (“affectation de longue durée” aka long term chronic issue). This grants me 100% coverage for anything related to my crohn’s, including surgeries and the drugs mentioned in this thread. Note that the drug itself is also capped at $500 per box of 2 pens due to French regulation on drug prices, vs $5000 without insurance in the U.S.). Disclaimer: I’m French American.

spondylosaurus 3y ago

Regarding the rejection, ask about low-dose methotrexate! It helps prevent your body from building up a resistance against those sweet, sweet monoclonal antibodies. I was hesitant at first thanks to how many MTX horror stories I've heard, but those dose is so small that I thankfully haven't experienced any side effects. Just 7.5mg once a week.

atombender 3y ago
The evidence here is actually very slim. There are some studies that show a mildly positive effect on drug survival, but of these, the longest studies have typically been only a year or less. A recent Dutch single-blind RCT (van der Kraaij et al. 2023 [1]) on adalilumab on psoriasis with/without methotrexate reported very favorable results after one year. However, when they their third-year update basically concluded that the effect was not real. As a counterpoint, many of their patients exited the study by the end of the third year (sometimes due to adverse events), and so at the end they had just 8 patients left in total. They use some statistical techniques to account for this, but I'm not a statistician and don't know if they make sense. Some commentary here [2]. As an aside, it's interesting that most studies typically look at ADA (anti-drug antibody) serum levels and not actually at clinical efficacy. A few studies do look at both. I'm inclined to think that it's better to be safe than sorry, but that's in spite of the evidence. Regarding MTX horror stories, there are some things one can do to prevent/alleviate side effects [3]. One thing that's not known by most doctors is that a lot of people (maybe as many as 40% of the U.S. population) have a genetic mutation that impacts the body's ability to activate folate. The MTHFR 667CT genotype reduces folate activity by about 35-40%, while having two copies of the mutation (677TT) reduces it by about 70-80%. Since MTX is a folate antagonist and folic acid is taken to counteract this, it means that for many people, the folic acid doesn't do its job. There are two alternatives (folinic acid and L-methylfolate), both widely available by prescription, that don't have this problem, and some rheumatologists swear by them. A formulation called Rheumate (L-methylfolate plus curcumin) was developed specifically for use with methotrexate. [1] https://pubmed.ncbi.nlm.nih.gov/37014287/ https://pubmed.ncbi.nlm.nih.gov/37014287/ [2] https://onlinelibrary.wiley.com/doi/10.1111/jdv.19282 https://onlinelibrary.wiley.com/doi/10.1111/jdv.19282 [3] https://rheumnow.com/content/dsb-managing-methotrexate-toxicity https://rheumnow.com/content/dsb-managing-methotrexate-toxic...

zdragnar 3y ago

I don't know how common this is, but for some Very Expensive Medications, drug manufacturers such as Lilly will run non-profit orgs that will help you get them dirt cheap if your insurance won't cover them. In my case, my dermatologist put me on Taltz straight away, skipping all of my insurance company's preferred first drugs because the complication rate was much lower. Even if my insurance company would have covered it, the co-pay would have been impossible to keep up with. However, with their other org covering the cost, I think I ended up paying something like $25 a dose for what was at the time several thousand dollars retail price. All of that is to say, if the health insurance plan your company has doesn't want to cover it, it might be worth reaching out to the manufacturer to see if they will help. At the very least, they may be able to recommend a US based specialist to get you a new prescription if the specialist pharmacies here don't respect a foreign prescription. Edit: here's the specific program I went through: https://www.taltz.com/savings-support https://www.taltz.com/savings-support