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I have the pen in the fridge and I have not touched it for four days

Started 24 June 2025 · 22 replies · 198 hearts · read 4k times

SerenLlandudno, UK · 24 June 2025
about a year ago

A question rather than an update: I have the pen in the fridge and I have not touched it for four days

I have been reading here for a few weeks and have not posted, so this is me posting.

What I would find most useful is not advice. It is somebody describing what their version of this was, and how long it went on for.

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.

66

TommieEly, UK
#1

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.

3

TychoLeiden, NL
#2

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

10me too 3

EsiFacilitatorToronto, Canada
#3

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

22

CarlMiddlesbrough, UK
#4

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

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.

9

DelphiThessaloniki, GR
#5

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

10

PerduMontpellier, FR
#6

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.

9

SaskiaThe Hague, NL
#7

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

12me too 1

CormacWaterford, IE
#8

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

8

SephNorwich, UK
#9

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

10

BodhiByron Bay, AU
#10

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.

6

TasnimBradford, UK
#11

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.

10

OsipTbilisi, GE
#12

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.

9

TorinBelfast, NI
#13

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

8me too 1

SerenLlandudno, UK
#14

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

6

TommieEly, UK
#15

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

6

TychoLeiden, NL
#16

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

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.

10

OllieCardiff, UK
#17

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

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?

7

CarlMiddlesbrough, UK
#18

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

11me too 6

DelphiThessaloniki, GR
#19

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

6

PerduMontpellier, FR
#20

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

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.

9

EsiFacilitatorToronto, Canada
#21

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.

10

CormacWaterford, IE
#22

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

7