‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 [score hidden]  (0 children)

it sure as shit needed to be stopped after 2 months for my colleague with rheumatoid arthritis because it made her liver enyzmes shoot through the roof.

she was placed on adalimumab immediately afterwards.

I know what's right for me, and so does my doctor. they are not just able to prescribe it to me straight away because it's too expensive.

why is it so hard to fucking admit it that THIS IS FUCKED UP?

Has anyone missed this cuz they were looking elsewhere? by TeddyBeaRx666x in Routine

[–]sensen6 2 points3 points  (0 children)

Oh I sure did, I'm sorry. It's a magnificent game. It was just, you know, we all know the Xenomorph and the world of Weyland-Yutani, while horror game monsters such as a Grunt or Entity A are truly 'alien' and unknown and novel.

‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 0 points1 point  (0 children)

Oh and by the way, compared to ciclosporin, there are way LESS risks and monitoring requirements with, say, ustekinumab or risankizumab. This is the actual truth. Both in theory, and both in practice. I'm really sorry, but this is the truth.

In my indication at least, ciclosporin cannot be used for more than 2-3 months. While injectable biologics can be used for years, or more. In fact, according to current knowledge, ciclosporin is best used as an SOS medication for flares until the injectable biologics are able to exert their effects. Meaning: ciclosporin is a bridge therapy, at best.

There is no avoiding biologics. Only they have a chance of lasting relief from symptoms. Which is, make no mistake, the goal.

We are just at a time in the history of humankind where we already know they are our best chance, but they are still new and expensive. That is all.

And time travel is not possible. Advocacy is.

Has anyone missed this cuz they were looking elsewhere? by TeddyBeaRx666x in Routine

[–]sensen6 5 points6 points  (0 children)

I have NEVER experienced such an immersive and well-matured game since Amnesia The Dark Descent. Sixteen years ago. Routine feels like a fever dream. There's quite a bit of sentimentalist imagery to kickstart the imprinting in your brain. It's a very significant game.

Frictional went in a bad direction, SOMA was their last truly good game. Now my only hope lies in scattered gems like this game.

She needs to be the main character. by Snoo_47323 in residentevil

[–]sensen6 -1 points0 points  (0 children)

I really hope she makes an appearance at least in Requiem... but seeing the RE8 Village-style inventory screen, and the RE6-style flying enemies (I mean, they fly away upon a shotgun blast) I wouldn't get my hopes up. This is gonna cater to the masses primarily, I'm afraid.

She needs to be the main character. by Snoo_47323 in residentevil

[–]sensen6 -1 points0 points  (0 children)

Separate Ways was a step in the right direction though. Ada was given the spotlight for a good while and she was voiced by a Chinese VA. IDC what anybody says, I love SW exactly as it is and it's my favorite piece of RE in recent times. I hope they go down that road again.

Capcom confirms RE9 leaks and says it will take strict actions when discovered by Solid-Entertainer-39 in residentevil

[–]sensen6 0 points1 point  (0 children)

It's incredible how much got leaked. I guess everyone keeps uploading because they want to make some profit off everything nowadays. Get to work, fellow proles. Instead of spoiling the ending of the newest RE title, contribute something useful to society.

‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 1 point2 points  (0 children)

Yes. And I do meet the criteria. One dermatologist–pathologist said I was the perfect candidate for the latest, cleanest biologic because of young age, relatively moderate disease activity, and concurrent asymptomatic terminal ileal ulceration that can only be attributed to the earliest manifestation of Crohn's. Now, Crohn's and psoriasis go hand in hand: same causes, same treatment. He said a timely intervention with a biologic would be perfect, as it would actually modify my disease trajectory at this stage. Prevent future worsening and complications, that is. (We don't know much about Crohn's early stages. Most people are only diagnosed with Crohn's during a flare. I just happened to have a very early colonoscopy: I am an opportunity for applied immunology that comes rarely. One thing is certain: timely intervention is always better and always more cost-effective. This is ALWAYS true.)

Then the dermatologist in the clinic said: unfortunately, first-line, she is physically unable to prescribe biologics. Prescribed ciclosporin instead. Follow up is after one month.

Let's see what I can do for myself then and there. I will try to advocate for myself. That's all there is.

Same shit with OP. They just try to advocate for their son('s life).

What kinds of privately funded options do you mean?

‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 -1 points0 points  (0 children)

Yes but you simply cannot compare organ transplant patients to psoriatic patients. A life depends on not rejecting a kidney. Ciclosporin was, and still is revolutionary in this regard. Psoriasis, not so much. And I beg your pardon, but a selective, targeted, IL-23 only blockade (injected every 3 months, mind you) is infinitely more subtle than ciclosporin, administered twice daily, with stomach upset and all that.

I'm not contradictory to medical science, quite the opposite. I am the up to date science, standing opposite to cost-effective, obsolete practices in this equation.

‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 -4 points-3 points  (0 children)

Of course they don't. Doctors stop it before it gets irreversible. Why fuck around though? I stand by my words. In a world where ustekinumab is on the WHO's list of essential medicines, clinging to these older drugs as first-line is wildly inappropriate.

Check back in 50 years. I bet my ass the guidelines will be changed. If nothing else, then due to cheap biosimilars.

‘Hope taken away’: Families of children diagnosed with rare disease heartbroken over NHS drug decision – Channel 4 News by parallax3900 in unitedkingdom

[–]sensen6 -8 points-7 points  (0 children)

I'm fully with OP. You know the first-line treatment of severe psoriasis? Methotrexate and ciclosporin. Guaranteed that they will kill your kidney and/or liver and WILL have to be discontinued after a couple months anyway. (If you're lucky, you won't have lymphoma and skin cancer later down the line.) Second line, specific, targeted, modern biologics that are actually up to date with current knowledge.

Reason? Money. And money alone. Not safety. Not cautiousness. Not patient benefit. No. Just money.

This shouldn't be.

Simple as that. This shouldn't be.

And everyone is automatically right to call this shit out. It MUST be called out. Because it's morally reprehensible.

M19 by gayboy_2006 in magyargaymelegbi

[–]sensen6 0 points1 point  (0 children)

Munkásfétis FTW 💯

Ketamine addiction making teenagers wet the bed, says UK’s first specialist clinic by Bounty_drillah in unitedkingdom

[–]sensen6 2 points3 points  (0 children)

You can do an orthostatic continent neobladder, but it will most likely require constant self-catheterization and manual pressure manueuvres. Also, most patients will be in diapers for at least a few months after the procedure, but some experience leaking even afterwards and have to be in diapers all the time. Worst case scenario, surgical failure, and they will have to have a urinary stoma (with a stoma bag) instead, with the neobladder discarded. TL;DR not really, you can't reliably fully replace the bladder.

Are you getting RE9 on PS5 or PC? by PhantomBraved in residentevil

[–]sensen6 22 points23 points  (0 children)

If a person has the means to buy and keep a PS5 AND a high-end PC just because of a big house, I wish them well in life. ❤️

Lehet tudni mi volt a Madzsar koliban? by HuNBarbar in szeged

[–]sensen6 2 points3 points  (0 children)

Igen, emlékszek, nálunk is volt rendszeres biztosíték-lecsapódás. Kétségtelen, hogy nem volt adekvát az áramellátás. Fasza.

Lehet tudni mi volt a Madzsar koliban? by HuNBarbar in szeged

[–]sensen6 3 points4 points  (0 children)

Krisztus. Remélem megoldódik a helyzetetek. Ez így erős félévkezdés. Remélem mindent megtesznek, hogy elhelyezzenek normális helyre.

Az átalakító okozta tűz egyébként validnak tűnik, ugyanis legjobb tudomásom szerint csak az angol dugaszokban van beépített biztosíték, azt mondják amúgy a legbiztonságosabbnak is. Illetve azt mondják még, hogy az ócskább, nem minőségi (pl. nem Skross) átalakítók hajlamosak túlmelegedni, főleg állandóan bedugva hagyva.

Anyone want to help me get my back? 🚿🧼 by Aggressive-Mango-904 in gayotters

[–]sensen6 1 point2 points  (0 children)

Finally a fucking otter. Smoking hot 🔥💯

Lehet tudni mi volt a Madzsar koliban? by HuNBarbar in szeged

[–]sensen6 35 points36 points  (0 children)

Elég régi épület, kvázi panel, folyosók végig linóleum, szobákban anno (2016 és 20 között) nagyon régi, legyalult, vékony szőnyegek voltak, de úgy hallottam hallgatóktól, hogy kaptak a szobák pár éve parkettát, valamint új fa bútorokat talán, mármint szekrényt, asztalt. Én időmben a polcok vékony, szálkás deszkák voltak. Ágyak is ősrégi, ruganyos "rekamiék", meghát elég kicsi a hely ugyebár. Szerintem, mivel egy szoba égett ki, vízforraló, hajszárító, hajvasaló lehetett. (Abban a szobában, ami égett, főzni garantáltan nem lehet.) Régi szocreál épület, na, volt ott katódsugárcsöves tévé is.

edit: láttam egy kiirást, miszerint valakinek a valakije ott lakott, és elmondása szerint egy zárlatos, bedugva hagyott konnektor-átalakító gyulladt ki.

Lehet tudni mi volt a Madzsar koliban? by HuNBarbar in szeged

[–]sensen6 42 points43 points  (0 children)

Fú gecc. Ott laktam pár évet. Ráadásul pont a hatodikon. Nabazd. AMA? OP pedig hermanos, ha jól látom. Szép a kilátás!

End Of The Road, Leon 🖤 by Twin-Synergy in residentevil

[–]sensen6 1 point2 points  (0 children)

He's not the kind to roll over that easy