How often is reasonable to be tested

Started 21 April 2026 · 15 replies · 94 hearts · read 1.8k times

NellFrome, UK · 21 April 2026

3 months ago

How often is reasonable to be tested — putting it in its own thread so it does not get lost in the check-in.

Evidence question. I would rather have an honest "we do not know" than a confident answer.

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

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

Not looking for a plan. Just company and whatever anyone has found.

SorayaTehran, IR

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

StefanZurich, CH

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

MiraFacilitatorRotterdam, Netherlands

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

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.

LarkGalway, IE

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.

9me too 2

PerduMontpellier, FR

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

RomyVienna, AT

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.

GwynethAberdare, UK

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

6me too 8

RohanPune, IN

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.

InêsPorto, PT

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

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

EphraimBrooklyn, NY

#10

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.

5me too 8

StellanMalmö, SE

#11

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.

TaviaPalermo, IT

#12

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.

ColNewquay, UK

#13

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.

MiraFacilitatorRotterdam, Netherlands

#14

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.

11me too 2

LilPreston, UK

#15

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.