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Maintenance

A maintenance dose that stopped holding, and what we did

Started 20 May 2026 · 15 replies · 89 hearts · read 2k times

OttilieCheshire, UK · 20 May 2026
2 months ago

A maintenance dose that stopped holding, and what we did — putting it in its own thread so it does not get lost in the check-in.

I do not know if this belongs in this circle. Move me if not.

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.

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.

I will report back either way, because I have been helped by other people's follow-ups more than by their questions.

30

CassWakefield, UK
#1

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

2

BronteHaworth, UK
#2

What the opening post 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.

8

BenediktFacilitatorVienna, Austria
#3

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.

7

OrsolyaBudapest, HU
#4

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

4

SerenLlandudno, UK
#5

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

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.

7

ZenBristol, UK
#6

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

6

PerryCardigan, UK
#7

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

4me too 4

MossHebden Bridge, UK
#8

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.

5

HollisBath, UK
#9

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

8me too 9

GabePhoenix, AZ
#10

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.

5

PeggyRotherham, UK
#11

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.

8

BettinaGraz, AT
#12

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

8

BastianFreiburg, DE
#13

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

5

BenediktFacilitatorVienna, Austria
#14

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

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

9me too 4

OskarWarsaw, PL
#15

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

3