A flare in month three and untangling the cause

Started 27 March 2025 · 22 replies · 217 hearts · read 3k times

EphraimBrooklyn, NY · 27 March 2025

1.3 years ago

Starting a thread on this because it keeps coming up in ones and twos: A flare in month three and untangling the cause

Squeamish subject, so I am going to be plain about it and get it over with.

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

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

Sorry for the length. If anyone has been here, I would very much like to hear it.

PosyChichester, UK

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

NoraDublin, IE

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.

TomásFacilitatorLisbon, Portugal

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

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

13me too 5

BrackenHexham, UK

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

BibiRabat, MA

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.

BramberSteyning, UK

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

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

11me too 7

BryherIsles of Scilly, UK

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

BettinaGraz, AT

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.

ÖzlemIzmir, TR

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.

AleksLjubljana, SI

#10

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

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

NyalaAddis Ababa, ET

#11

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

EphraimBrooklyn, NY

#12

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

6me too 3

PosyChichester, UK

#13

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?

NoraDublin, IE

#14

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

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

GethinMerthyr Tydfil, UK

#15

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.

12me too 7

BrackenHexham, UK

#16

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

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

BibiRabat, MA

#17

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

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

BramberSteyning, UK

#18

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.

BryherIsles of Scilly, UK

#19

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

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

BettinaGraz, AT

#20

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.

TomásFacilitatorLisbon, Portugal

#21

Gently: you have apologised three times in a post where you have done nothing that requires an apology.

AleksLjubljana, SI

#22

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.