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My prescriber stopped it and I was not consulted properly

Started 20 August 2024 · 23 replies · 268 hearts · read 2.7k times

IdaRotterdam, NL · 20 August 2024
1.9 years ago

A question rather than an update: My prescriber stopped it and I was not consulted properly

Writing this partly to ask and partly because writing it down usually tells me what I think.

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 have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

The thing that has surprised me most is how much of this is about other people rather than about me.

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

89

TedIpswich, UK
#1

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.

11

TanviMumbai, IN
#2

Gently disagreeing with the opening post, or rather adding the other half of it.

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

12me too 1

TillyHereford, UK
#3

What the opening post described happened to me too, in a slightly different order.

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.

10

BenediktFacilitatorVienna, Austria
#4

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.

14

DelythBala, UK
#5

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.

7me too 5

BronLincoln, UK
#6

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.

12

BramwellRipon, UK
#7

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.

9

GabePhoenix, AZ
#8

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

14

Birdie BWhitstable, UK
#9

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

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.

13

TressaSt Austell, UK
#10

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.

9

FenEly, UK
#11

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

6

BryonyMalvern, UK
#12

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

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.

14me too 3

NikoTbilisi, GE
#13

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

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.

8

GudrunAkureyri, IS
#14

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

10

DashSeattle, WA
#15

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

11

FabianBasel, CH
#16

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?

13

SinéadCork, IE
#17

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

9me too 1

IdaRotterdam, NL
#18

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

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.

11

TedIpswich, UK
#19

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

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

11

TanviMumbai, IN
#20

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

13

TillyHereford, UK
#21

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

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

10me too 2

BenediktFacilitatorVienna, Austria
#22

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

29

DelythBala, UK
#23

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

12