A peer support community, independent and not for sale. Since February 2024.
Something I have been sitting with: Explaining the medication to a care agency Not looking for advice so much as other people's experience.
The logistics of this are defeating me more than the medicine is.
I have written down what has actually happened, in order, because I find that more useful than my summary of it.
The thing that has surprised me most is how much of this is about other people rather than about me.
Thanks all. Genuinely.
78
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.
10me too 8
Reading the opening post, I recognised more of that than I expected to.
Yes to the burping. It is real, it is unbeautiful, and it does settle.
12
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?
8
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.
23
the reply above said something I want to sit with for a second.
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.
12
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.
14
It got worse before it got better for me, which I wish someone had said. About ten days of worse.
11
Building on what the reply above wrote rather than answering the original question.
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.
15
the reply above — yes, and the bit that took me longest to accept was the next part.
Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.
13
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.
8
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.
10
Please do not read the comments under news articles about this. I lost a fortnight to that.
15
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.
9me too 3
Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.
14
Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.
11
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.
15
I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.
13
Gently disagreeing with the reply above, or rather adding the other half of it.
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.
12
I did exactly the same and felt terrible about it. You have not done anything wrong.
10