Filgotinib : Hello everyone, Just something that... - NRAS

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Filgotinib

Flossie-M profile image
15 Replies

Hello everyone, Just something that popped into my head! I'm being switched from benepali to filgotinib in the next few weeks, benepali is less effective and making me feel unwell after covid.. Just wondering how I receive this? Benepali was delivered and I didn't have to pay but filgotinib is in tablet form I believe. So will I get a prescription and have to pay?

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Flossie-M
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15 Replies
Mmrr profile image
Mmrr

I take Filgotinib too. It will be delivered similar to your benepali, no charge for prescriptions.I've found the JAK inhibitors to be the most effective meds for RA 🤞it works for you too.

Flossie-M profile image
Flossie-M in reply to Mmrr

Thankyou very much for your help. That's such a relief!! I hadn't thought to ask my rheumatologist , always think of something once I'm home 🙄 . Glad it's working for you, thankyou for sharing this, I'm feeling much more positive about the change. Xx

Pastels profile image
Pastels

Hi, I pick up my Filgotinib from the Hospital I attend, 3months supply at a time. Good luck with it I’ve found it so helpful at controlling my RA. I’ve never paid for a hospital prescription.

Flossie-M profile image
Flossie-M in reply to Pastels

Thankyou very much 😊 glad it's having positive effects, I'm feeling hopeful about it, fingers crossed..xx

Pastels profile image
Pastels in reply to Pastels

if you can let us know how you go with Filgotinib that would be really helpful, I really appreciate hearing how others do when taking it!

Flossie-M profile image
Flossie-M in reply to Pastels

Yes, I will. It's definitely been a great help to me to know what I might expect. 💐

Amnesiac3637 profile image
Amnesiac3637 in reply to Pastels

Hi Pastels. You’ve been on Filgotinib longer than I have (just a month) and wondered if you’d had any dizziness or lightheadedness, or both, when you started it? It’s working really well for my joints but my head’s not right - a bit swimmy and dizzy and feel very briefly faint sometimes which goes almost immediately but is disconcerting and doesn’t do much for my day! Nothing else apart from the usual fatigue if I overdo things. Thanks in advance for your reply - and if anyone else on Filgotinib out there has had the same, please let me know.

Pastels profile image
Pastels in reply to Amnesiac3637

Hi there, yes I did have that dizziness and it passed, I can’t quite remember how long it lasted but it did pass and I’m absolutely fine now. The joint improvement came first then the fatigue lifted. I then did far to much to quickly and felt very worn out and sore. Slow and steady if you can and I really hope Filgotinib sorts for you it’s transformed my life….fingers crossed it continues!!

Amnesiac3637 profile image
Amnesiac3637 in reply to Pastels

Oh thanks! That’s really helpful and so glad it’s working for you. Have been very dizzy and had nausea since I started it and it’s got worse over the month so obviously side effects can be cumulative which seems to be happening. First time I’ve ever had side effects from either biologics or Jaks. Luckily, rheumatology appointment at the end of the week so shall ask the Oracle then.

This forum is so useful ‘cos however much we think we know we get caught out by unexpected drug reactions and there’s always someone on here who’s had the same thing and can reassure. Much appreciated and hope my side effects go and I can enjoy the definite benefits I’m already getting from Filgotinib. Stay well. Xx

Amnesiac3637 profile image
Amnesiac3637

Good luck with Filgotinib. I’ve been on it just under a month and it’s working well. Either a healthcare company will deliver to you or a pharmacy near you if you can’t /don’t want to stay in and wait, or you collect it yourself depending on your hospital’s arrangements. There’s no charge for any prescription doled out through secondary care so no need to worry there.

Flossie-M profile image
Flossie-M in reply to Amnesiac3637

Thankyou for your reply. It sounds like it works pretty quickly then which is great news! Feels like so long since I felt well, so many delays but hopefully on the right road 🤞😊xx

Borrow56 profile image
Borrow56

yes I agree with all that has been said. I’ve been on it for 6 months now and doing well.

I get 3 months supply at a time and either collect from the hospital or it goes to Lloyds chemist which is the only one my hospital deal with. No charge. Hope it will be successful for you.

Flossie-M profile image
Flossie-M in reply to Borrow56

Thankyou very much for your help 😊 fingers crossed it works. Xx

Lilahloo profile image
Lilahloo

I too have just come off Benepali and just starting Filgotinib. Only had for 5 days sofar but no side effects yet. It also gets delivered by the same health company that delivered Benepali. Hope all goes well for you x

Edwards23 profile image
Edwards23 in reply to Lilahloo

Can I ask did you have to leave time between benepali amd the New filgotinib. I have just had my tablets delivered and can't get any answer from anyone due to xmas.

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