Why can't migraine patients get wonder jab given OK a year ago?

[Northerner]

Thousands of migraine patients say they are being denied access to life-changing drugs given the green light on the NHS more than a year ago, The Mail on Sunday can reveal.

NHS bosses have told patients whose lives are being wrecked by agonisingly severe headaches that the groundbreaking medicines – known as CGRP inhibitors – are not yet available on the health service.

Yet the drugs were sanctioned last March by the UK health watchdog, the National Institute for Health and Care Excellence (NICE). It ruled they were not just clinically effective but also value for money.

Some patients are now so desperate they are paying for the drugs privately, at up to £350 a month, according to the Migraine Trust charity.

It says 'several hundred patients a month' have been in touch over the past year looking for advice, after they were unable to access CGRP inhibitors in their local area.

Una Farrell, communications manager at the charity said: 'Most people can't afford to pay privately but are scraping together what they can because the benefit is so great.'

Why can't migraine patients get wonder jab given OK a year ago?

Health bosses have told patients whose lives are being wrecked by agonisingly severe headaches that the groundbreaking CGRP inhibitors are not yet available on the NHS.

www.dailymail.co.uk

 

[mikeyB]

It may be rather expensive, but not wildly so. Severe migraine largely affects folk of a working age, so working day losses to this may well be commoner than with any other medical condition.

That said, there are now many drugs used in prevention and treatment of severe migraine which are, for many people, effective. Most of them have some vasoconstrictive effect, or an anti vasodilatory effect. The world's most dangerous toxin (weight for weight) Botox can be effective. There is no reason to think nicotine wouldn't work, either.

If the folk who are self funding this have been through the panoply of already used treatments, with little relief, then they should be given the opportunity to have prescriptions for this new treatment. As NICE say, it is effective and value for money.

But...

Nobody knows the long-term effects of this new drug. Even theoretically, an anti-dilatory will have the opposite effect to Viagra, and similarly in women. And also, it would oppose any drugs in the treatment of angina, and could worsen heart problems. Even when you have a cold, the blood vessels in your nose dilate to flood out the virus invaders and steer them away from the lungs. You mess with anti-dilatory drugs at your peril. But these people are desperate.

 

[Deleted member 21371]

It may be rather expensive, but not wildly so. Severe migraine largely affects folk of a working age, so working day losses to this may well be commoner than with any other medical condition.

That said, there are now many drugs used in prevention and treatment of severe migraine which are, for many people, effective. Most of them have some vasoconstrictive effect, or an anti vasodilatory effect. The world's most dangerous toxin (weight for weight) Botox can be effective. There is no reason to think nicotine wouldn't work, either.

If the folk who are self funding this have been through the panoply of already used treatments, with little relief, then they should be given the opportunity to have prescriptions for this new treatment. As NICE say, it is effective and value for money.

But...

Nobody knows the long-term effects of this new drug. Even theoretically, an anti-dilatory will have the opposite effect to Viagra, and similarly in women. And also, it would oppose any drugs in the treatment of angina, and could worsen heart problems. Even when you have a cold, the blood vessels in your nose dilate to flood out the virus invaders and steer them away from the lungs. You mess with anti-dilatory drugs at your peril. But these people are desperate.

So why have they been approved?
And how can long term effects be known, if no new drug is ever prescribed?
They are no known long effects of Covid vaccine yet?

 

[mikeyB]

Vaccines aren’t drugs, so if you think you can get long term effects from the Covid vaccine, you are medically illiterate. That’s not a criticism or an insult, just a fact.

The reason this drug has been approved is because it has a similar effect to other drugs used in the treatment of migraine, and has been notably effective in trials. Because it’s a completely new type of drug, even though it has the same effect, means that some generic side effects will inevitably appear, as I explained.

But nobody knows the effect of taking this treatment for two years, five years or 10 years. That’s how long term side effects come to light. Mice don’t live long enough to check possible long term effects. They don’t have long terms.

 

[Drummer]

One reason I divorced my first husband was his taking the tablets prescribed for my migraines - which were powerful pain killers and only prescribed in lots of five tablets at a time.
I was supposed to keep the tablets ready to use, but whenever I needed them they were gone.
In the end the GP refused to prescribe them as I was getting so many prescriptions.
I could cheerfully have killed him when I was suffering the full effects, so if there is an effective treatment now available it is downright cruel not to prescribe it.

 

[Deleted member 21371]

Vaccines aren’t drugs, so if you think you can get long term effects from the Covid vaccine, you are medically illiterate. That’s not a criticism or an insult, just a fact.

The reason this drug has been approved is because it has a similar effect to other drugs used in the treatment of migraine, and has been notably effective in trials. Because it’s a completely new type of drug, even though it has the same effect, means that some generic side effects will inevitably appear, as I explained.

But nobody knows the effect of taking this treatment for two years, five years or 10 years. That’s how long term side effects come to light. Mice don’t live long enough to check possible long term effects. They don’t have long terms.

Ah, jumping in onto two separate sentences and ignoring the actual different use of the word "drugs" in the first one, and "vaccines" in the second?
So you are denying the actual long term effects that have been found with the Astra Zenica vaccine, albeit a very low number?
But at least you do seem to agree, new drugs have to be prescribed, over a long term, to gain knowledge of the long term effects, as I said.

This is why I choose younger members of the medical profession, to me they seem more open to changes in beliefs, and accept learning continues, and possibly communicate better, again, not an insult or a criticism, just a fact.

 

[Bruce Stephens]

So you are denying the actual long term effects that have been found with the Astra Zenica vaccine, albeit a very low number?

Those aren't long term, as far as I'm aware. They (these blood clots and low platelet counts) occur within days (up to 3 weeks or so) after the dose.

 

[mopinwil]

Personally, I would be very careful regarding any diagnosis of Migraine. I had them for over 30 yrs at the most 3 to 4 a week. Tried everything possible to get rid of them and had some drastic medical intervention as well. Don't be tempted to self-diagnose. Make sure normal things are checked like normal or ingrowing Wisdom Teeth, they grow side ways under the gums into other teeth and cause excruciating pain and they can easily be checked our by having a Carousel Xray which can be arranged by a Dentist I believe. Also have a look at diet and make sure there are no allergies or intolerances to certain foods. Check you are not suffering from an auto-immune disease - I have Fibroymyalgia which sucks. (but things are improving now that I have been diagnosed as having Diabetes 2 because I am very carefullly monitoring carbs no more than 100 a day)

THEN get a medical professional to check you out for possible types of Myofascial pain. That is what happened to me and it was found that I was possibly suffering Myofascial Pain (now this is very hard to diagnose) and the label was Trigemenol Neuralgia. After all these years I was given hope - I have been prescribed and taking Ibuproven Retard, two a day and so far so good no pain. (I am so very relieved to be able to get my life back and function normally again and manage to get some healing sleep.) This may not be what you are suffering from but best to check it out - it is all a process of elimination and if this post helps you I will be so pleased. If not please carry on looking for results I know how hard it has been to bring a family up and function will all this going on in the background. Take care and good luck with your reseach!

 

[Deleted member 21371]

Those aren't long term, as far as I'm aware. They (these blood clots and low platelet counts) occur within days (up to 3 weeks or so) after the dose.

I think the last count was around 30 deaths from unusual blood clots associated with the Astra Zenica vaccine.
I would say that was a long term effect?

 

[Bruce Stephens]

I think the last count was around 30 deaths from unusual blood clots associated with the Astra Zenica vaccine.
I would say that was a long term effect?

Well, in a sense. But the side effect is something that happens with a couple of weeks or so of the vaccination. It's not something that (as far as we know) might hit six months later.

I know a bunch of people who've had the vaccine (who're old enough that this side effect isn't that likely) and I don't think they have anything to worry about now that it's been a few weeks since they had it.

 

[g miller]

I suffered with what was diagnosed as migraines for years which was treated with a self injected drug (that I had no idea what the name was, but was very effective) that knocked me out as soon as the needle was removed for at least four hours, until I had four in a week and was sent for a brain scan in 1998. The consultant then informed me that my BP was dangerously high and prescribed some pills for that. I have not had a return of any since then. So it turns out that what was thought to be migraine headaches where brought on by high blood pressure whic the doctor I was seeing at the time denied were connected .the subject was never refered to again but he kept up with the prescriptions.

 

[Deleted member 21371]

Well, in a sense. But the side effect is something that happens with a couple of weeks or so of the vaccination. It's not something that (as far as we know) might hit six months later.

I know a bunch of people who've had the vaccine (who're old enough that this side effect isn't that likely) and I don't think they have anything to worry about now that it's been a few weeks since they had it.

It's a question that could have different answers.
There are multiple scenarios about to happen.
But even if you have had the two shots, and developed none lethal blood clots, who is to say damage hasn't occurred, which may lead to further complications at a later date?
And, if we go back for the third shot, or if it becomes an annual shot, again, that is building on complications that are now known.
So we already know it has complications, and the complications themselves are known to have long terms effects.

To me, the risk of not having the vaccine is far higher though, it was the vaccine I had, I considered it the best choice.