7 ms·

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no c

by olavgg 8y ago

My mom, my little brother and I also have Ankylosing spondylitis and in my country we get free and the best possible treatment. With that in mind, there is no cure and there is not even much effort put into research of a cure. But with a good treatment plan your daily life quality can improve a lot. I have earlier asked my doctor about stem cell treatment, but my doctor says this is very experimental and lacks a good amount of good research. And since Ankylosing Spondylitis isn't exactly life threatening, it is not worth it. Currently I take NSAIDs, especially newer medicines like Vimovo https://www.vimovo.com/ https://www.vimovo.com/ helps a lot, but is not something you should take every day. I take it mostly during the long winter months here in Norway, because low temperature makes me really stiff. Chat with your doctor about options here. My mom get tumor necrosis factor-alpha (TNFα) blockers, she says it helps her, but I've said no for now as I don't want to weaken my immune system and I can live with the pain I have now. Another thing that really helps is regular exercise, you probably already know about it, but you are probably also like me, that just starting with exercise is just difficult. Anyway, you should exercise 3-4 times a week with minimum 30 minutes of sweating. For me it helps a lot when my back is really stiff. And as part of our awesome public health treatment we all get 4 weeks of sick leave annually. Where we travel as group to Turkey / Spain and go through an exercise plan. That is really something that has helped me to still be able to work 100%, You should do something similar even if it cost you money.

moh_maya 8y ago
Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher than the individual generics that are part of the combination; on the other hand, it is a convenience. Horizon pharma, which markets the drug, is not the cleanest of the bunch either [1,2] .. They have a really good understanding of the healthcare market, and know exactly how to game it. [1] https://www.bloomberg.com/news/features/2018-04-06/when-these-new-pharma-bros-show-up-drug-prices-tend-to-go-monumentally-higher https://www.bloomberg.com/news/features/2018-04-06/when-thes... [2] https://www.forbes.com/sites/johnlamattina/2018/03/15/physicians-and-patients-finally-avoiding-horizons-expensive-low-value-pain-drugs-duexis-and-vimovo/ https://www.forbes.com/sites/johnlamattina/2018/03/15/physic... (edit: added 2nd link)
- mnw21cam 8y ago
  Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that, I'm not sure Naproxen is any worse than the Prednisolone (steroid) tablets I'm now on for two months while I wait for the Methotrexate (nasty cytotoxic) to work. If there's a stem cell treatment on the horizon, I'd love to hear about it.
  - olliej 8y ago
    Naproxen is vastly superior to prednisone. The side effects from prednisone are wretched, and long term use is way worse than the impact of naproxen. I was on nsaids for a decade due to poorly constructed skeleton. I only moved off because I became tolerant to them.
    - mnw21cam 8y ago
      Agreed. I think Predisolone is probably a bit better than Prednisone too. Yes, the side-effects of Naproxen were not as bad, but I'm only on Prednisolone for 8 weeks. I wouldn't want it for longer, given how sick it's making me feel right now. Thing is, it is being way more effective on the first dose than Naproxen ever was.
    - pkaye 8y ago
      Naproxen can restrict blood flow to the kidneys so need to be cautious in the long term.
      - olliej 8y ago
        Yeah, but compared to prednisone it's water :) The NSAIDs are all remarkably safe, as opposed to steroids, and the non-steroidal non-NSAIDs (wtf thought it was good to make NSAID mean just a specific group??). I'm on Celebrex, which is much more exciting in its side effect profile, but is still preferable to prednisone :-/
koolba 8y ago
> Currently I take NSAIDs, especially newer medicines like Vimovo https://www.vimovo.com/ https://www.vimovo.com/ helps a lot, but is not something you should take every day. If you want to save some money then skip the Vimovo and take generics of the two active ingredients: Aleve (Naproxen) and Nexium (Omeprazole) http://thehealthcareblog.com/blog/2015/11/04/dont-fall-for-this-otc-pain-reliever-insurance-scam-make-it-yourself-and-save-99/ http://thehealthcareblog.com/blog/2015/11/04/dont-fall-for-t... Only reason I can see to take Vimovo is if your doctor gives you a few samples at the office.
- dragonwriter 8y ago
  Aleve is naproxen sodium immediate release designed as a fast-acting analgesic, Vimovo uses slower-acting base naproxen in an enteric-coated delayed release tablet as the core around which the immediate release esopremazole magnesium is wrapped. The esopremazole magnesium —as well as he enteric-coating for the naproxen—is a technique to manage the potentially serious side effects of long-term use of naproxen. If you can get your doctor to write you a prescription for separate enteric-coated delayed release naproxen and immediate release esomeprazole magnesium, that may be a suitable substitute. Using the non-generic OTC medicines you (and the blog you cite) name, which would reverse which component has delayed released and use a faster-acting NSAID formulation is definitely not a suitable substitute. (Also, the non-physician writing the blog gets dosages wrong, suggesting 440mg of OTC Aleve—which he claims is naproxen, when it is in fact naproxen sodium—is a substitute for 500mg of base naproxen; if Aleve was naproxen you'd obviously need 500mg, not 440mg, but with naproxen sodium, the equivalent to 500mg of naproxen is 550mg of naproxen sodium, so in addition to magnifying the side effects the drug combo seeks to manage, his recommendation would seem to be underdosing for the intended therapeutic effect.) And this is why you shouldn't take medical advice from someone whose qualifications for giving such advice seem to be that he is a health economist and former hospital accountant.
  - koolba 8y ago
    I write my comments assuming that anyone that gets legal or medical advice from anonymous commentators on the internet knows the usual "Ask your ________" prior to any of this and so skip the standard disclaimers. That aside, great point and thanks for the great explanation!
dustinlakin 8y ago
I also have AS and started with NSAIDs, and would advise you be very careful with your stomach. I was taking indomethacin that made the stiffness slightly manageable but acid reflux symptoms became a serious issue. After switching to Humira I have no more active pain or stiffness, with only some minor uveitis (in an eye that has many other issues). I wish someone would warned me earlier because my stomach has never been the same. Unable to even drink tea at the moment because of my reflux issues. Also to note, I have had zero issues with my immune system and I have been using it for about 5 years and through 3 eye surgeries.
- rorykoehler 8y ago
  I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.
  - dustinlakin 8y ago
    I am glad to hear that exercise and diet works well for you, but there are some of us that aren't so lucky. I have been through four different rheumatologists, and plenty of non-drug related therapy attempts. I even consider myself lucky that Humira has been so helpful.
    - rorykoehler 8y ago
      I can totally understand your choices though I think we can both agree that the current drug choices are very primitive due to their systemic efficacy. There are some interesting mouse studies that are investigating methods of targeted secretion of biologic drugs using CRISPR (modified viruses?) at the site of inflammation [1]. I'm hoping these progress to human trials soon. [1] https://www.technologynetworks.com/genomics/news/a-crispr-based-cure-for-arthritis-288219 https://www.technologynetworks.com/genomics/news/a-crispr-ba...
rorykoehler 8y ago
I exercise. Actually AS makes it so I exercise less than I would like to. I love exercising and was competitive at an international level as a teenager. I won't take TNFα's. Seems to be worse for my body than the disease. I'm more interested in positive sum treatments.

by olavgg 8y ago

moh_maya 8y ago

Just a tangential headsup for others if they are paying for vimovo (out of pocket, or significant co-pay). Vimovo is a combination of two generics (naproxen & esomeprezol) delayed release. You can probably get OTC versions of the two pills for much cheaper than what Vimovo charges. This drug falls into (IMO) ethically grey area in terms of drug pricing & marketing; on the one hand, it is (was?) priced much higher than the individual generics that are part of the combination; on the other hand, it is a convenience. Horizon pharma, which markets the drug, is not the cleanest of the bunch either [1,2] .. They have a really good understanding of the healthcare market, and know exactly how to game it. [1] https://www.bloomberg.com/news/features/2018-04-06/when-these-new-pharma-bros-show-up-drug-prices-tend-to-go-monumentally-higher https://www.bloomberg.com/news/features/2018-04-06/when-thes... [2] https://www.forbes.com/sites/johnlamattina/2018/03/15/physicians-and-patients-finally-avoiding-horizons-expensive-low-value-pain-drugs-duexis-and-vimovo/ https://www.forbes.com/sites/johnlamattina/2018/03/15/physic... (edit: added 2nd link)

mnw21cam 8y ago
Naproxen (anti-inflammatory) isn't the kind of thing that you want to be on long-term, if it can be avoided, either. I have just been diagnosed with autoimmune psoriatic arthritis. I had three months of Naproxen, which made it possible to walk a couple of miles each day, but they were basically handed out as a "Here, this should take down the inflammation, now wait for your specialist appointment." Having said that, I'm not sure Naproxen is any worse than the Prednisolone (steroid) tablets I'm now on for two months while I wait for the Methotrexate (nasty cytotoxic) to work. If there's a stem cell treatment on the horizon, I'd love to hear about it.
- olliej 8y ago
  Naproxen is vastly superior to prednisone. The side effects from prednisone are wretched, and long term use is way worse than the impact of naproxen. I was on nsaids for a decade due to poorly constructed skeleton. I only moved off because I became tolerant to them.
  - mnw21cam 8y ago
    Agreed. I think Predisolone is probably a bit better than Prednisone too. Yes, the side-effects of Naproxen were not as bad, but I'm only on Prednisolone for 8 weeks. I wouldn't want it for longer, given how sick it's making me feel right now. Thing is, it is being way more effective on the first dose than Naproxen ever was.
  - pkaye 8y ago
    Naproxen can restrict blood flow to the kidneys so need to be cautious in the long term.
    - olliej 8y ago
      Yeah, but compared to prednisone it's water :) The NSAIDs are all remarkably safe, as opposed to steroids, and the non-steroidal non-NSAIDs (wtf thought it was good to make NSAID mean just a specific group??). I'm on Celebrex, which is much more exciting in its side effect profile, but is still preferable to prednisone :-/

koolba 8y ago

> Currently I take NSAIDs, especially newer medicines like Vimovo https://www.vimovo.com/ https://www.vimovo.com/ helps a lot, but is not something you should take every day. If you want to save some money then skip the Vimovo and take generics of the two active ingredients: Aleve (Naproxen) and Nexium (Omeprazole) http://thehealthcareblog.com/blog/2015/11/04/dont-fall-for-this-otc-pain-reliever-insurance-scam-make-it-yourself-and-save-99/ http://thehealthcareblog.com/blog/2015/11/04/dont-fall-for-t... Only reason I can see to take Vimovo is if your doctor gives you a few samples at the office.

dragonwriter 8y ago
Aleve is naproxen sodium immediate release designed as a fast-acting analgesic, Vimovo uses slower-acting base naproxen in an enteric-coated delayed release tablet as the core around which the immediate release esopremazole magnesium is wrapped. The esopremazole magnesium —as well as he enteric-coating for the naproxen—is a technique to manage the potentially serious side effects of long-term use of naproxen. If you can get your doctor to write you a prescription for separate enteric-coated delayed release naproxen and immediate release esomeprazole magnesium, that may be a suitable substitute. Using the non-generic OTC medicines you (and the blog you cite) name, which would reverse which component has delayed released and use a faster-acting NSAID formulation is definitely not a suitable substitute. (Also, the non-physician writing the blog gets dosages wrong, suggesting 440mg of OTC Aleve—which he claims is naproxen, when it is in fact naproxen sodium—is a substitute for 500mg of base naproxen; if Aleve was naproxen you'd obviously need 500mg, not 440mg, but with naproxen sodium, the equivalent to 500mg of naproxen is 550mg of naproxen sodium, so in addition to magnifying the side effects the drug combo seeks to manage, his recommendation would seem to be underdosing for the intended therapeutic effect.) And this is why you shouldn't take medical advice from someone whose qualifications for giving such advice seem to be that he is a health economist and former hospital accountant.
- koolba 8y ago
  I write my comments assuming that anyone that gets legal or medical advice from anonymous commentators on the internet knows the usual "Ask your ________" prior to any of this and so skip the standard disclaimers. That aside, great point and thanks for the great explanation!

dustinlakin 8y ago

I also have AS and started with NSAIDs, and would advise you be very careful with your stomach. I was taking indomethacin that made the stiffness slightly manageable but acid reflux symptoms became a serious issue. After switching to Humira I have no more active pain or stiffness, with only some minor uveitis (in an eye that has many other issues). I wish someone would warned me earlier because my stomach has never been the same. Unable to even drink tea at the moment because of my reflux issues. Also to note, I have had zero issues with my immune system and I have been using it for about 5 years and through 3 eye surgeries.

rorykoehler 8y ago
I don't take drugs. I will take an immune regulating cure but not a immuno-suppressant like Humira. NSAIDs class of drugs are not good for long term treatment. They will physically destroy any semblance of health you may have.
- dustinlakin 8y ago
  I am glad to hear that exercise and diet works well for you, but there are some of us that aren't so lucky. I have been through four different rheumatologists, and plenty of non-drug related therapy attempts. I even consider myself lucky that Humira has been so helpful.
  - rorykoehler 8y ago
    I can totally understand your choices though I think we can both agree that the current drug choices are very primitive due to their systemic efficacy. There are some interesting mouse studies that are investigating methods of targeted secretion of biologic drugs using CRISPR (modified viruses?) at the site of inflammation [1]. I'm hoping these progress to human trials soon. [1] https://www.technologynetworks.com/genomics/news/a-crispr-based-cure-for-arthritis-288219 https://www.technologynetworks.com/genomics/news/a-crispr-ba...

rorykoehler 8y ago

I exercise. Actually AS makes it so I exercise less than I would like to. I love exercising and was competitive at an international level as a teenager. I won't take TNFα's. Seems to be worse for my body than the disease. I'm more interested in positive sum treatments.