What I would do if I had to choose again

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.

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

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

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

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.

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

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

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

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

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.

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.

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

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

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

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.

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.

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

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

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

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.

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.