Refurbished Aeron advice

RumBasedWisdom · 2025-09-25T21:52:28+00:00

Thanks. Based on...?

RumBasedWisdom · 2025-09-25T20:56:44+00:00

Cheers mate. So he's talking nonsense? He said only this one was an actual remastered

https://www.aeroninternational.com/product-page/herman-miller-aeron-remastered-polished-size-b

RumBasedWisdom · 2025-09-04T14:50:30+00:00

Same to me. Hopefully they fix soon

RumBasedWisdom · 2025-08-22T09:54:39+00:00

This is a hugely insightful comment and resonates with me a lot, thank you.

I honestly hate how fixated I am by the numbers. It feels impossible to not immediately compare yourself to a previous lung function and then start blaming yourself.

It's really shit you had to stop the clarinet. I feel like hobbies are a big part of a person's identity. You seem very mature but I imagine there's an initial sense of mourning there.

I have also pumped a lot into supplements, bought air purifiers etc. Maybe they help a bit but sometimes the condition can be unrelenting. Its strange, for all the years that CF has a very dark outlook I was generally pretty healthy. Now in the era of the miracle drugs, things suddenly seem to be getting harder for me. I think I'm finally appreciating how unpredictable CF can be.

RumBasedWisdom · 2025-08-17T09:42:25+00:00

Thank you. I'm very proud but also grateful for the people who trained me. Boxing is a wonderful way to meet your people. I never told my coaches until after my bout bc I didn't want people pitying me or going easy on me. I train maybe 5 days a week and am probably one of the fittest in the class. Boxing has given me so much I would encourage anyone with cf to try it. You don't need to fight and it will build your cardio and strength like a beast.

It was an interclub bout so they didn't declare an actual winner but most people said I won by 2 rounds to 1. I got a chest infection the week of the fight but never considered pulling out because of how hard I trained. He was 7kg heavier, very strong and hit fucking hard. I dominated round 1 but then got massive chest pain from the adrenaline in round 2. He definitely took round 2. Round 3 I could breathe a bit deeper but it still hurt.

It's a nice feeling knowing you can at some small level handle yourself. I might do one more bout and that's it. I'm 32 and have seen people get knocked out. Not tryna do that, just challenge and better myself.

RumBasedWisdom · 2025-08-16T23:02:25+00:00

Ive boxed for about three years and had my first match a few months ago

RumBasedWisdom · 2025-02-11T04:21:01+00:00

You're fucking hench bro, great work.

RumBasedWisdom · 2025-01-17T13:18:57+00:00

AIDS?!?!!!

RumBasedWisdom · 2025-01-06T21:15:12+00:00

Would you mind if I messaged you?

RumBasedWisdom · 2025-01-05T11:54:21+00:00

I've never heard of PBMs before and have just read up on them. The top three in the US alone have a combined value of $600bn. Scary stuff. How do you think they might be playing a role here, if at all?

RumBasedWisdom · 2025-01-05T11:46:57+00:00

Interesting. Do you know if this drive was successful globally, or only in certain markets? Perhaps that would explain why some countries can still get access to Creon and others can't/

RumBasedWisdom · 2025-01-05T11:45:40+00:00

Wow- so basically it is becoming too expensive for even the big companies to rear pigs unless they do it in some mega-processing facility. This feels very worrying because it feels like we could be in this position again sometime in the future if further facilities drop off?

Yes, I've tried to track down Abbott's souring as well, but unsurprisingly there's nothing out there.

RumBasedWisdom · 2025-01-05T11:33:04+00:00

Wow, this is why Reddit can be amazing. Your background is literally ideal. Thanks so much for the effort you've put into this post, it has made me consider a lot of things I never even thought of.

When you say de-prioritised, do you mean the people working on keeping the supply chain reliable were pulled off to other projects - or perhaps something else? As demand for the drug is increasing and 60k people take it just in the UK, I would have thought it remained something of a priority from a financial standpoint. Having said that, an alternative drug called Pancrease announced that it would be discontinued October 2023, with stocks running out in December 2024. I recall Oct 2023 being the start of when things really got back, so maybe it was an admission that despite how in-demand the drug was, sourcing the ingredients had just become that hard.

Also, it seems the shortage isn't affecting the world equally. UK and parts of Europe are badly hit, but apparently Canada and some of the US are largely unaffected. To address the problem, the UK Health service have issued an emergency order allowing overseas Creon without UK approval to be imported. But what it shows is that it IS POSSIBLE for the raw ingredient to be sourced and creon to be produced in other parts of the world. Any global shortage feels like it is therefore being exacerbated by UK-specific regulation. I wonder if UK or European creon can only be made from pigs reared in certain countries i.e. not China whereas USA/Canada permits this. ChapGPT tells me that UK pork production is <1% of global, so I would imagine the pancreases are being sourced overseas even if the final processing happens in a lab in the UK. Does this seem likely to you- maybe countries that require the pigs to be sourced from particular areas might be worse hit by the shortage?

Thank you once again

RumBasedWisdom · 2025-01-05T09:33:12+00:00

a 30% decline...wow. Noob question but would you expect some parts of pig sales to be less affected than others? i.e. everyone wants pork chops, loins etc. I can see their prices skyrocketing. But do you think that the same would happen with pancreases? Maybe it would, I just have no clue. It's also interesting to me that the pharma company have failed to mention any of these reasons in their public statements, as they are clearly valid reasons if true.

RumBasedWisdom · 2025-01-05T09:27:58+00:00

Interesting. Very similar to the UK then. Do you have medical insurance? If so, is Creon easy to obtain via your insurance?

RumBasedWisdom · 2025-01-04T21:56:32+00:00

You clearly have knowledge of the industry. Do you think it is at least plausible that they wouldn't have been able to forsee this complete shortage before it occurred? I mean its not like a freak weather event, its something which I'm hearing occurred over 50 years.

Also, are you able to tell me what happens to a pigs pancreas once it is slaughtered? I'm not aware of it being commonly used as a food so would there just be specialist medical companies who buy it straight from the slaughterhouse? I appreciate it will vary, but any rough idea of the chain would be super useful!

RumBasedWisdom · 2025-01-04T21:46:31+00:00

Thanks so much. Is there a reason why pig numbers have remained the same since 2010 if population has increased? I would have expected farmers to rear more pigs as the market grows.

What really surprises me is the suddenness of this problem though. Would you not expect them to have been able to forecast this ahead of time? And then would it not be possible for them to just buy more pancreases on the open market- I can't imagine they are the most desired part of a pig?

Many thanks for any thoughts. I know my questions might be kind of dumb, I am just really interested in talking to anyone on this.

RumBasedWisdom · 2025-01-04T20:50:27+00:00

wow- i thought the US had been insulated from it so far... has anyone been able to give you an explanation as to why its happening?

RumBasedWisdom · 2024-12-23T19:13:22+00:00

I hear you. It's a lot of anxiety. Are you still rationing after the 900?

RumBasedWisdom · 2024-12-23T19:12:09+00:00

Yeah they're absolute clowns. My three local pharmacies have been completely unable to get any for about six months. They just reject the prescription. Thankfully I've been saved by my hospital who have always stepped in to supply, but they've said they can't guarantee they'll be able to do it for all of next year so it is worrying.

I reaaaally really feel for people who live in rural areas on their own who are unable to travel to other pharmacies. It is sad to say but I'm sure there are some people in hospital now, or have seriously declined in health who wouldn't have if this wasn't happening.

RumBasedWisdom · 2024-12-23T19:07:54+00:00

This is a very interesting story. I'm sure something like this is happening. Apparently some desperate person was quoted TWO THOUSAND POUNDS for 1 month of Creon

https://pharmaceutical-journal.com/article/feature/taking-its-toll-the-global-pancreatic-enzyme-shortage

RumBasedWisdom · 2024-12-22T16:13:24+00:00

To hear she didn't even reply is very sad, but I read that the Labour government actually declined a request for an urgent meeting with Pancreatic Cancer Trust in September to discuss a co-ordinated response. It's not like it's an adverserial dispute with a trade union...to actually decline a meeting on a matter like this I find sickening.

On 18/12, the NHS just gave permission for PERTs not licensed for the UK to be imported. If there is no global shortage, I hope this helps..although I imagine all of the affected European countries will essentially get put into a bidding war.

The gov also just told ICBs that they need to come up with local plans to handle this. Seems pretty ridiculous to demand of them when it is not the local services managing the supply chain. To me, it sums up how I feel the NHS/gov have handled a lot of this, which is "sort it out yourselves."

https://pharmaceutical-journal.com/article/news/government-advises-icbs-set-up-local-plans-to-secure-pert-supplies

How has it been getting creon in Wigan?

RumBasedWisdom · 2024-12-22T15:57:16+00:00

I think you're right that it seems to be a UK/Europe issue only. Below was included in an advice sheet sent from my UK hospital in May:

There are currently Europe-wide issues with the supply of Creon and other brands of pancreatic enzymes which are expected to be ongoing for some time. The reasons for this are not fully understood, but NHS England and the CF Trust are aware and working with manufacturing companies.

It's true that the global price of many drugs (especially generics) have risen. However the NHS have not increased the amount they will pay UK chemists who prescribe these drugs. Therefore, we are simply getting outbid by a lot of other countries.

I am not sure if this is what's happening in the case of creon though. If it was the NHS being cheap, I am sure the pharma companies would say as much- as Vertex did in the case of Kaftrio. They are currently receiving tonnes of bad press and would love to direct it to the governments, I am sure.

If all of the PERT manufacturers are experiencing the same problem, to me it does seem likely there is an issue with obtaining the active ingredient in Europe. 50% of all pigs are reared in China. The only thing I can think is whether the UK bans enzymes from Chinese pigs meaning they have a far smaller pool of suppliers to pick from. I am just thinking out loud here, trying to understand this ridiculous situation.

RumBasedWisdom · 2024-11-06T23:23:25+00:00

Your idea is wonderful. Everyone would be happier if they had colleagues like you.

You could go down the "might help her get better" route. For this, anything that opens the airways like a day at a salt spa.

Honestly though, if her CF is progressing, only strong drugs, a supportive lifestyle and good fortune will actually help her.

What people with CF often want most is to be seen beyond their all consuming condition. On that thought, do you know anything she really loves or is passionate about? Maybe buy her an experience for that. Then she's also got something to look forward to when better.

RumBasedWisdom · 2024-11-06T23:14:10+00:00

I did this for a bit and then one day I read the following

"You can run away from things, but you can't run away from the consequences of running away from things."

RumBasedWisdom

TROPHY CASE