@RapidRaider my appointment was with Dr Goldmeir who is currently unavailable so a female consultant spoke to me, for the life of me I can’t remember her name but I do have a follow up appt in 2 months.
I finalised and sent what is a very good email to the MHRA. One of the questions was to ask how many yellow card submissions have been submitted to date and what number triggers a drug review. It is fundamental to our cause that everyone reports their issues/off label side effects via the appropriate authorities and similar schemes operating in every country. Without the numbers our case can look weak and gives the responder the potential to argue that complaints/sufferers are extremely low in comparison to prescriptions numbers.
If you have not reported via this scheme please do so NOW.
I’ve took the liberty of providing the link. It takes 5 minutes to complete. Don’t waste what is an extremely good opportunity to get this drug reviewed and potentially banned for cosmetic purposes from which we could get media interest and ultimately research
A big thank you to @Scotsman and @Greek for their input into this.
Can you confirm y/c submission please. As there’s quite a few UK guys on here.
Regards
Laz
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Excellent initiative LazarusRy! My latest news about the UK says that reporting is very low as well as unfortunately as in most countries. We are currently working on a form just for PFS to make reporting easier.
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Oui c’est fait
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Underlining this.
The link:
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Done
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Things appear to be moving backwards in the UK, largely due to the MHRA’s (Yellow Card Scheme) refusal to acknowledge the more serious side effects of Finasteride.
For the past few years, the NHS has not held any official position on the existence of PFS. Earlier this year I came across some official literature from NHS West Suffolk, in in which they write: “There has been no conclusive scientific evidence published on this syndrome”. You’ll find it on the last page. At least they bothered to comment on it.
Pharmacist and retailer, Superdrug, did one better by coining their own name, “Post-Propecia Syndrome”, then went on to flat out deny its existence: “There is no scientific evidence that Post-Propecia exists, but many believe it does”.
It goes without saying, but both of the above are Infuriating to read in 2021.
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Write to the MHRA more need to. Have you submitted a yellow card? Also consider contacting your MP the more that do ithis the better. We need to make noise
Way ahead of you. Submitted a report in 2014. Contacted them again in 2017 when they updated details about depression and suicidal thoughts caused by Fin, told them it wasn’t enough. Contacted them again with a personal update. Always a similar response, words to the effect of: ‘we understand you might have symptoms but there isn’t any proof they were caused by Finasteride’.
There are many posts on this forum detailing similar responses from them. They seem to want hard scientific evidence. Personal reports aren’t quite enough for some reason. Makes you wonder why they have a patient reporting platform at all, as it’s not fit for purpose.
I just wanted to make UK sufferers aware, particularly new ones, that the NHS is now publishing literature which appears dismissive of PFS and it may be an ongoing trend. I hope it is a one-off.
And so the fight continues and more people need to contact the MHRA directly, because the NHS follows their lead regarding symptoms and warnings.
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Thanks for your efforts @Alvin_13 it fucking actually stinks it really does. The purpose of the yellow card scheme is being undermined by the fuckwits operating within it. We need someone with clout to challenge their dismissive actions. I expect this has gone on for a long time with many reported drug reactions. As you say It’s not fit for purpose. I’m awaiting on a reply from them which I hope is productive but reading this gives me less hope. Even getting a lawyer to write to these cu…s might help or a member of the press to report on their behaviour towards people trying to escalate adverse reactions. Sorry my resolve is being tested, what I never would have thought possible in my worst nightmare is actual reality. What a world we live in when the mechanisms that were brought in to protect us are as bad as the perpetrators themselves. We just have to fight on, we’ll get a breakthrough one day .
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Hi All,
This eats away at me daily as my situation worsens. I’m aware of a few cases in the UK who are severely physically effected they
are actually that bad that the condition has become life threatening (I’ll not name them on here) and that’s not mentioning their cognitive decline. They are years into pfs and left the forum a while ago.
Reason for the post, despite being patted on the head by the MHRA I cannot let it go.
I want to go back to them again but this time i intend to be more direct/hard hitting while asking/encompassing open questions about their escalation process, who their director is, why are they not accepting what is being tabled, why did they not acknowledge or comment on the provided statistical data, all medical travesties have started this way, ill sight the thalidomide scandal. Basically going in hard ball and asking for the names of the decision maker which they failed to include in their last response. Even inviting a spokesperson to come on to a podcast (would never happen but worth a punt). Why they dont recognise the condition despite another European country recently acknowledging it. There are more questions I intend to table… All of this adds to the audit trail for when we get recognised and shame them publicly which I’d possibly include in the mail.
Mitch and the guys are doing a sterling job (understatement) in bringing forward new frontiers in terms of research which will one day hopefully translate into a treatment.
BUT I want to keep it going with the authorities.
I’m asking for help from someone, even a few of us in drafting a reply to the pharma vigilance team (an arm of the mhra). I’m aware a few have made direct contact and were met with the same whitewash but accepting their B/S isn’t palatable, its simply filed and forgotten, ramping things up is what gets us through and even brings forward a professional to fight the cause. The foundation even brought my mhra struggles to the attention of a broadcaster. Who knows it might get aired one day.
Let me know please.
In the meantime I intend to go back to my MP who sat in the passenger seat last time. I’ll go into his office which is near my home. to ask for a F2F appointment.
Ii hope someone is up for this. Survival instinct and the sheer inustice of this all keeps me going. Taking this lying down isn’t what any of us should do.
Laz
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I’ll tell my story anywhere;=
This brought interest from some unexpected areas and also shows knocking on the door of the authorities can bring something… Every single sufferer should at least report their sides to the authorities
Laz
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You’re a hero in my book Laz
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