How I decided not to take something after reading about it

Started 26 June 2025 · 24 replies · 249 hearts · read 4.9k times

WellsChester, UK · 26 June 2025

about a year ago

Something I have been sitting with: How I decided not to take something after reading about it Not looking for advice so much as other people's experience.

Putting this here because I do not want to be sold anything, I want to know what is actually established.

I have written down what has actually happened, in order, because I find that more useful than my summary of it.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Not looking for a plan. Just company and whatever anyone has found.

BunnyWeston-super-Mare, UK

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

AbramAmsterdam, NL

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

MableBolton, UK

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

SunilFacilitatorBirmingham, UK

What the reply above described happened to me too, in a slightly different order.

I will leave this open for a few more days and then add it to the circle's resources, because the answers here are better than anything I would have written.

24me too 6

FabianBasel, CH

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

MorayElgin, UK

Yes to the burping. It is real, it is unbeautiful, and it does settle.

PolaGdańsk, PL

the reply above — yes, and the bit that took me longest to accept was the next part.

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

10me too 3

IvorLlanelli, UK

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

TamarPlymouth, UK

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

FlossieShrewsbury, UK

#10

What the reply above described happened to me too, in a slightly different order.

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

8me too 3

IdrisCardiff, UK

#11

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

8me too 8

TacitaRome, IT

#12

the reply above said something I want to sit with for a second.

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

NevGrimsby, UK

#13

Reading the reply above, I recognised more of that than I expected to.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

WellsChester, UK

#14

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

BunnyWeston-super-Mare, UK

#15

Building on what the reply above wrote rather than answering the original question.

I did exactly the same and felt terrible about it. You have not done anything wrong.

AbramAmsterdam, NL

#16

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

MableBolton, UK

#17

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

TobinCork, IE

#18

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

8me too 3

FabianBasel, CH

#19

Reading the reply above, I recognised more of that than I expected to.

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

MorayElgin, UK

#20

What helped was lowering my own expectations of the week rather than trying to hold the week together.

PolaGdańsk, PL

#21

Please do not read the comments under news articles about this. I lost a fortnight to that.

IvorLlanelli, UK

#22

What the reply above described happened to me too, in a slightly different order.

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

SunilFacilitatorBirmingham, UK

#23

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

FlossieShrewsbury, UK

#24

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.