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Raine
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January 8, 2019 4:50 pm  

Is anyone here a crohns patient using stelara? My GI wants to add methotrexate (25 mgs weekly) because of active disease.  I`m on the fence because I think the mtx caused a prior irregular heart beat.  The other option is cymzia.  OR get have the rest of my colon removed.  I go see him on Thursday to discuss.  Me thinks its tine for a second opinion.


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john68
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January 9, 2019 4:24 pm  

Hi Raine, I cant give you an answer about the meds the GI has suggested, but for another option my thoughts are-How active is the crohns, is it causing the upset that it did before you had the ostomy. if that is the case then its cancelling out the benefits of the ostomy. If these new meds had a successful effect it would be an easy fix, but as you say they have side effects and also we all know how aggressive crohns is.


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Raine
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January 10, 2019 2:44 pm  

Thanks, I decided to go with the methotrexate and see what happens.  Since I have had confirmed crohns through out my GI tract, a further ostomy seems fruitless...


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VeganOstomy
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January 10, 2019 3:00 pm  

Good luck, Raine! I haven't been on either, but I know people who've been on both (separately). 


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raspout66
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June 9, 2020 7:39 pm  
Posted by: @veganostomy

Good luck, Raine! I haven't been on either, but I know people who've been on both (separately). 

I had my first Stelara a month ago. No side effects like most people on it. I would give it a shot since, unlike other biologics, there are no nasty side effects. It’s monstrously expensive though... except in Canada where it is free, at least that’s my case. Thank God since I could not afford 2725$ a shot...


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VeganOstomy
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June 10, 2020 11:30 am  
Posted by: @raspout66

It’s monstrously expensive though... except in Canada where it is free, at least that’s my case.

I'm curious how you've been able to get it free. I may simply be unaware of how biologics are filled and sold these days :-D 


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Dona
 Dona
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June 10, 2020 1:05 pm  

Hi Raine,

Good luck with all this. Just be aware that methotrexate is ( as you probably know) a powerful immune suppressant.  You will probably be getting more blood tests while on it to see how your white blood cells are doing. This will be especially important with the covid - 19 on the loose.

Something to ask your doctor about anyway.

I did try it for awhile, but my white cell count got too low. Everyone is different though.


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raspout66
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June 10, 2020 1:15 pm  

In Quebec health care is mostly free, except for « médecine d’exception » meaning very rare and costly meds in which case you have to go through government paperwork, with many conditions attached to get accepted. I was refused since I have actually no mild or severe Crohn upsurge, one of the conditions. But here’s the interesting part: Jansenn, the Stelara manufacturer, accepted to give it to me free for as long I am on it! It’s called their « compassion program ». I thought I was very lucky but then I learned it’s quite common that Jensenn does this. It all depends on your gastroenterologist; in my case I didn’t ask for it, it was my specialist request since I am at high risk of developing Crohn again, also my age, 68, and the fact that I had 2 operations, one recently in last January, and also that I have 1 meter of small intestine left. 

OK some science for you, free... Stelara is the last of the biologics in the arsenal for Crohn. Main advantage: unlike others, this biologic med has almost 0 side effects. Second advantage: you can inject it yourself at home, again unlike most biologics. And, you only have to take it once per 8 weeks, way less than Humira for example.

 

Fun facts, still free... Crohn patients have been shown to have overactive interleukines 12 and 23 which are modulators that trigger the immunological system; those are responsible for the excess immunologic reactions Crohn people suffer from. Stelara acts to block these in simple layman terms. Furthermore most people on it have Crohn symptoms completely gone, well something like 60%. Or greatly reduced. 

Very interesting fact: since people who die from COVID 19 pass away because, mostly ,they are victims of what is called a cytokine storm; and interleukines 12 and 23 are in part responsible for this reaction. You guessed it: many scientists believe that Stelara prevent someone from having a severe reaction to COVID 19! It’s seems illogical since when on it you’re immunodeficient, but recent studies suggest it might be true.

You’re welcome...

Pierre Racine, Laval, Québec.


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VeganOstomy
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June 10, 2020 6:04 pm  
Posted by: @raspout66

In Quebec health care is mostly free, except for « médecine d’exception » meaning very rare and costly meds in which case you have to go through government paperwork, with many conditions attached to get accepted. I was refused since I have actually no mild or severe Crohn upsurge, one of the conditions. But here’s the interesting part: Jansenn, the Stelara manufacturer, accepted to give it to me free for as long I am on it! It’s called their « compassion program ».

Thank you for sharing that! I was aware that several drug companies have programs like this, so I'm glad that you got the meds free! It's great to have a GI doctor who is proactive and works to get you what you need. I hear too many stories of doctors who "don't care". 


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braveness23
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June 11, 2020 6:13 pm  
Posted by: @raspout66

It’s monstrously expensive though... except in Canada where it is free, at least that’s my case. Thank God since I could not afford 2725$ a shot...

I'm in the USA and I get Stelara (and all of my healthcare costs for that matter) for $5/yr.  The actual cost is around $24,000 USD per injection but I am on a high deductible health insurance policy with a deductible of $6,500 a year - everything after that is 100% covered.  

There is a co-insurance program called Jansen CarePath that pays for my first injection each year except for $5 that I have to pay myself.  The cool thing is that the amount that they pay goes toward my deductible.  So I pay $5 for my January injection and then all of my medical expenses are 100% paid by insurance for the remainder of the year.

I have no idea where all of this money is coming from.  I have had several quarter million dollar years where I only paid $5.


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raspout66
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June 11, 2020 6:46 pm  

« The actual cost is around $24,000 USD per injection »...

 

What!? Jesus, what kind of country is USA heading to... I don’t of any west Europeans or Canadians that would accept such absurd and ballooned prices. Abject for profit system. 
Pff... Trump kingdom.


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braveness23
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June 11, 2020 7:31 pm  

I don't disagree...


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dogtalkerer
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June 12, 2020 12:22 pm  

raspout, drug prices were skyrocketing during Obama's time, Obama  wanted this, Trump is trying to get drug prices lowered. 


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raspout66
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June 12, 2020 1:57 pm  

@dogtalkerer 

No one loose their houses over health bills in civilized countries... That’s the point. 

As for $24000 US for a single dose of Stelara it is beyond laughable. In Quebec the healthcare system pays Jansenn, the manufacturer, about 18200$ A YEAR (a dose every 8 weeks). That’s the deal they made with Jensenn.

Yeah, « the Art of the deal »...

 


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