How long is too long at one dose

Started 14 January 2025 · 18 replies · 192 hearts · read 2.4k times

BevanSwansea, UK · 14 January 2025

1.5 years ago

Something I have been sitting with: How long is too long at one dose Not looking for advice so much as other people's experience.

Long one, sorry. I have been chewing on this for a fortnight.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

DoraUtrecht, NL

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

IdrisCardiff, UK

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

14me too 4

TomásFacilitatorLisbon, Portugal

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

GwendaEbbw Vale, UK

Gently disagreeing with the opening post, or rather adding the other half of it.

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.

GwynethAberdare, UK

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.

11me too 8

BrammyBelfast, NI

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

HalCambridge, UK

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

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

BroganCumbernauld, UK

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.

HeddaCopenhagen, DK

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.

GwennoPwllheli, UK

#10

Gently disagreeing with the reply above, or rather adding the other half of it.

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

BevanSwansea, UK

#11

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.

DoraUtrecht, NL

#12

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

IdrisCardiff, UK

#13

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

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.

FlorrieBlackburn, UK

#14

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

12me too 9

GwendaEbbw Vale, UK

#15

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

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

8me too 8

GwynethAberdare, UK

#16

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

TomásFacilitatorLisbon, Portugal

#17

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.

HalCambridge, UK

#18

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

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.