Vydura
Looking for any feedback, positive or negative from anyone using Vydura.
Four years ago when Emgailiy hit the UK it was a wonder drug for me after a lifetime (since I was ten) of chronic migraine. So many meds inc Botox failed to work, only triptans touched them but the volume of 20 days a month meant I was restricted.
Within a week or two of starting Emgality I went from 20 days a month to just 3/4. Now my body has built up antibodies to it and I'm back to almost daily migraines for the last six months, life's hardly worth living.
My Neurologist tells me Vydura will be available to prescribe on the NHS in the UK next month and keen to move me over to it. I have concerns as it's limited in the number which can be used in a month and one can't take Triptans when taking Vydura.
So I would welcome any feedback from those who have tried it.
thanks for raising such a great discussion. Of course, I'm sorry to hear that you've had such a long road with migraine. It's unfortunately all too common for us to build up a tolerance to a medicine - which is so disappointing when it's a medication that you've responded so well to. It's good to hear that you're staying with your neurologist through the process so he can best guide you through the process and fill you in when any new medications pop up. I unfortunately don't have personal experience with Vyurda, so I can't speak firsthand to it, but I'm sure others will join the conversation and share their experience. In the meantime, I hope that you're finding some ways to stay comfortable through the migraine attacks. Do you find ice or heat to bring any temporary relief. I personally find ice packs to be most helpful, but I know others prefer heat and some even alternate between the two. I'm just wishing you the best and hope that you get answers and relief soon!
Best
Alene (team member)
Hi
I hear how frustrating and upsetting it is when a medication that has previously worked becomes less effective. Vyurda I believe is equivalent to Nurtec in the US and is approved here for both acute and preventive migraine management. It's taken every other day for prevention. I've taken Nurtec to acutely treat migraine, with little impact so I discontinued it. That doesn't mean it won't work for you. I'm sure others will be along soon to share their experiences with you. In the meantime, let me share our information on this with you here;
1) https://migraine.com/migraine-treatment/nurtec-rimegepant
2) https://migraine.com/living-migraine/trying-oral-cgrp-preventivesHow long were you getting Botox? It can take three, four many be rounds of injections before we notice improvement in attack frequency and severity. In fact it took four rounds for me! Something else to keep in mind is it's important that the healthcare provider who is doing the injections be an expert and follow the migraine protocol. Here is more on this;
3)https://migraine.com/video/video-of-botox-injections
Let me know what you think and I'm sending you pain free wishes, Nancy Harris Bonk, Patient Leader/Moderator (team member)Thank you both for your replies and links.
I had Botox back in 2019, several rounds with no effect, then went to Emgality, one of the first in the UK. In the last year had Occipital nerve blocks and albation, nerve blocks worked well once, not so next time likewise albation.
I realise I'm running out of options but hesitant about Vydura and as I'm told the Nice guidelines for use here in the UK are a max of eight pills a month.
It sounds like it's been a tough road for you! How long did the nerve block work for you? Warmly, Tracy (Team Member)
On the positive side from April 2020 things were good until Summer 2023 when they nosedived and August had first nerve blocks, neck and occipital. Effective 3/4 months, had again in May with albation, no help at all. Last week had blocks again and fingers crossed. My Neurologist is good but she doesn't do the blocks, they are my Pain Management consultant, she's a different NHS trust so no link up between them so no real cohesion, I'm the only link.
it's such a good point. One doctor doesn't always provide the answers to all our questions or needs, so we sometimes need multiple specialist. It's helpful when they collaborate together, but that can be a rarity. I've been in these shoes before the thing that I found most helpful was to make good notes and prep for the appointments as best as possible so I could brief them on my other appointments. It's so much easier said than done, because the appointments are often so fast, but it's important that each doctor knows the full picture. Thanks again for opening up so much important discussion.
Alene (team member)
