Medicines and Health Regulatory Body. Why you need to report your symptoms

General Discussion
#1

@LazarusRy and I (very much mainly him, I have done very little) have been in contact with the MHRA here in the UK.

The conversation yielded one very important nugget of information.

People are not reporting their symptoms.

As far as the MHRA are concerned, the warning you receive with your drug tells you of a risk of erectile dysfunction and that is the end of the story, because they do not have enough reports of other symptoms to justify further investigation.

If you want PFS to be recognised, people need to know about it. And they need to know about the side effects that aren’t erectile dysfunction.

This is a very simple 5 minute job. Report your symptoms, especially if you want people to know that PFS represents more than a drop in libido.

Here is the link you need to get started. There is info here for country’s around the world.

If yours isn’t listed, please take that as a sign that you have some work to do and please look into that for yourself, for us here and for anyone who signs up later on.

9 Likes
#2

This is very important. Yet again I find our credibility has been questioned it breaks my heart. I thought what I sent (with a great amount of help from @Greek) would have been sufficient considering there are 18 plus thousand cases reported on the foundation yet the yellow card scheme database shows negligible numbers PLEASE report your symptoms, and the full list not just your E.D !! It’s the least you can do.

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#3

This is only possible if you’re from the UK right?

I reported my sides to the Swedish regulatory authorities already.

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#4

@Cbrandel yes mate each country has its own regulation authority. Collectively they come together to compare results etc so it’s very important everyone does this . Out of 18000 cases I expect there are quite a few from the uk yet hardly any have reported it which is very disappointing.

3 Likes
#5

I fully agree, this is what I keep repeating in France as well and with a lot of effort, the numbers are increasing.
The victims represent quotas, the more the number of declarations increase, the more we get.
Many are afraid to give their identity but it must be repeated that this process is anonymous, you are transformed into a number after validation of the declaration.
We must also regularly ask the EMA, the ANSM and the FDA for updated figures.
And do not hesitate to write to your health agencies, they have an obligation to respond. Let’s never forget that there is strength in numbers!

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#6

Let’s get these done guys. A really small effort that will be extremely impactful.

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#7

If you’ve got more than one mail address report it multiple times. We need a leg up with this. We can give them numbers if that’s what is needed