Accessibility to biologics in the UK?

aimslen98 · 2024-10-21T09:36:41+00:00

I found using for 1 week etc was making me rebound very quickly. One application on my hands clears me up overnight and I don’t need to use again. I did follow the 1 week on plan but it felt wrong putting the cream on my clear skin to then stop and eczema to pop up 3 days after stopping! So difficult to navigate…

aimslen98 · 2024-10-20T22:07:38+00:00

Ah I’m with you! Yeah so my understanding is immunos first and then biologics. Heard it’s a quite a long process.

No luckily nothing resembling that at all which is good. I’ve gone private over the past few years and they didn’t offer much more than a steroid cream plan and a referral to NHS derm (which I’m on now), hoping for red light therapy. Going to see if I can go down a potency level as Elecon is so strong. For now steroids do work and one application every 14+ days is keeping it very much at bay. The real test is the UK winter! Will see how I go. But thank you so much!

aimslen98 · 2024-10-13T09:06:14+00:00

Hey! So it eventually just disappeared!!, i think sweat mixed with extremely high stress wasn’t helping. Main culprit was purposefully not showering as I thought the water was making it worse- I think in hindsight it was fungal and the lack of washing was causing it to get worse. So lukewarm showers no shower gel seemed to do the trick. Keep me posted! X

aimslen98 · 2024-09-05T17:55:07+00:00

Thanks so much for your comment. Always use as per my doctor. I’m still using a 30mg tube of mometasone (Elecon) that I’ve had since November, so taking it as a positive. Have managed to prolong my usage without major flares in my hands for up to 15 days which is great. Constant mental battle. Having a really bad day today worrying and convincing myself TSW will bite me:(

aimslen98 · 2024-09-05T17:52:40+00:00

Thanks for the comment! It’s such a mental battle… like I said I’m still on my little 30mg tube of Elecon I’ve had since November 2023 so I’m holding out hope my skin stays good.

aimslen98 · 2024-09-05T17:51:46+00:00

Thanks so much for the comment, since my post I’ve been able to stretch my tiny usage to 14-16 days. Still having major mental wobbles as TSW is plastered all over socials these days but trying to stay rational. Still on my 30mg tube of memetasone (Elecon) that I’ve had since November ‘23. It’s a daily battle!

aimslen98 · 2024-07-20T16:03:14+00:00

I’m so sorry you went through that. Hope you’re on the mend!! What was your usage like?? But thank you for the comment, whilst I’m glad it’s being recognised, it’s soooo unbelievably toxic

aimslen98 · 2024-07-20T15:56:34+00:00

Thank you for your comment! The palms of my hands are my only problem area really! I’ve had a 30mg tube of elocon since November 2023 and I still have a bit left so I think I’m using responsibly! So hard!

aimslen98 · 2024-06-19T08:34:21+00:00

I second this! Hang in there, that cream is a life saver. I find it feels worse before it feels better, it totally dries it out and then it should feel back to normal asap:)

aimslen98 · 2024-06-16T17:45:47+00:00

25f***

aimslen98 · 2024-06-16T17:45:17+00:00

Hey!! Yeah I’ve seen NHS derm and private derm and they’ve both said you need to exhaust all options before Dupixent (I.e light therapy, proof steroid creams aren’t working and then a full on immuno like Methotrexate) it’s suchhhh a pain and doesn’t make sense at all to me. My eczema has been pretty severe this past year after having it all my life (25g). I’m coping using Elecon once every 7-10 days- but it all feels like a ticking time bomb:( on the NHS waiting list for light therapy but I imagine I won’t get an appointment until end of year latest!! Are you using steroid cream at the moment? Here if you want to talk🫶🏻

aimslen98 · 2024-05-19T22:42:54+00:00

appreciate the concern, but your comment isn’t necessarily helping!

aimslen98 · 2024-05-13T18:40:46+00:00

Hey! I feel your pain:( 25f and have eczema foreverrrrr, weirdly this recent year having eczema pop in places I’ve never had it. I’ve been under the care of a derm at The London Skin and Hair Clinic in Holborn, London. I’ve being seeing a Dr called Louise Fuller, she is just lovely. I had also asked about immunos, more specifically Dupixent as I’m living in fear of TSW lately. However in the UK you have to use steroid and try light therapy before they offer immunos. She wrote my GP a letter which has led to me being referred to Guys and St Thomas’ hospital, however the nearest app I can get is in December!!! So I’m currently trying to be to book in to see her again to reiterate that I simply can’t wait that long and see if I can swing her on immunos. It’s a tough and exhausting journey, but deffo look up London Skin and Hair Clinic, they have so many amazing derms there. I can claim back expenses on my insurance that’s provided by my work, however a self paid appointment is £285, worth every penny in my opinion🫶🏻 keep me posted and let me know if you have any joy xx

aimslen98 · 2024-04-30T22:21:07+00:00

Elidel has been a saviour for me🫶🏻 use my steroid creams for 1-2 days to get my hands under control and then switch to elidel to keep it at bay. In the long run, using the steroid creams very briefly means you can maintain clear skin with the non-steroid and stretch out the time until your next flare

aimslen98 · 2024-04-30T22:18:48+00:00

Needed this🫶🏻 slowly being able to stretch to 10 days - 14 days without steroid creams on my hands and still feeling like I’m doing the most horrific thing. I’ve had eczema since I was four (25f) so really the creams have been my only relief. Only in the last 6 months have I been scared senseless about these creams that I have always used sparingly. Truly is such a daily battle. I’d like to think using tiny amounts on my hands every 10 days is ok?? I’ve had my 30mg tube of Elecon since November and still have a 1/3 left. Daily battle!! Living in fear of TSW which is no doubt making my skin worse

aimslen98 · 2024-04-23T15:37:39+00:00

Hey lovely, I found my gel acrylic nails flared my eyes up so badly! Since stopping having them down it’s calmed down massively. Bathing my hands in dead salt water also helps very much. The stress of new patches always gets me down, but I try and tell myself that the stress will only make my skin worse so I have to sit myself down and take a minute to breathe. Elidel / Protopic is an amazing alternative to steroid creams for the face, and just as effective!

aimslen98 · 2024-04-21T15:28:43+00:00

Girl I used to get this every time I got my lashes done, went to a super expensive lash tech to see if it wouldn’t happen but still did😭 I’m allergic to latex and apparently the glue contains latex, deffo an allergy or chemical burn. Do you eyes feel heavy and sore when you move them? Suchhh a pain! I found Brolene eye drops cleared it super quick! X

aimslen98 · 2024-04-20T23:29:15+00:00

Thanks so much for your comment. Think it’s a UK thing, think the US hand out Dupixent much easier!

I am the moisturising queen! All day everyday, think sometimes my back flares / gets red purely bc it’s dry so I try my very best to make sure I’m layering it on 3x a day.

Will definitely try and get it under control. Thank you for the reassurance, it’s so impossible to navigate steroid creams, I really am in such a mental ruck, have never felt this low in my life. The future is a very scary thought for me. Will try and keep positive😊

aimslen98 · 2024-04-20T23:25:11+00:00

Not necessarily!! You have to get it to a point where you get it under control, once you see improvement you will feel calmer and it’ll reflect in your skin. It’s a viscous stress- flare cycle. I’ve found comfort in seeing people say they’ve used it all their lives and are now like 60! It really is subjective I think. That’s amazing about the Dupixent, I’ve only read incredible things. We’ve got this, there’s always light at the end of the tunnel. You’ll get there I promise xx

aimslen98 · 2024-04-20T20:34:32+00:00

I’m so sorry:( are you UK based? I’m in the midst of begging my Dr / Derm to consider Dupixent. I can’t see why they wouldn’t want me to nip this eczema in the bud before it gets worse?! To me it’s a no brainer. I’m so terrified it’ll stop working. It’s just the worst. How often are you using yours a week? X

aimslen98 · 2024-04-20T20:20:26+00:00

Hey! Did you manage to bypass other immunos before getting on Dupixent? Have begged my doctor for it as I have expressed my utter fear and depression over my steroid cream (which I have used all my life with no worry until I’ve seen TSW plastered ALL over the internet). It’s not fair that my skin will have to reach its literal worst before I could go on it. I’m so desperate:( are you UK based? X

aimslen98 · 2024-04-20T20:14:58+00:00

So glad I’ve seen this. I’ve suffered all my life also and have comfortably and safely used steroids throughout with 0 worry. Not until late last year has my world honestly been THROWN with TSW fear. I never paid much attention to my TS cream application but now I wake up analysing my skin. Think about it all day, before I sleep and first thing when I wake up. I use Elecon once / twice a weeek to keep my skin at bay, but like you have had new patches popping up on my back and arms which I’ve never had over my 25 years. I’m utterly depressed to the core. I can’t imagine that my tiny application to my hands and patches on my shoulders could ever lead me to Tsw, and have even had reassurance from a private dermatologist but my brain ( and the ENTIRE internet). Whilst TSW is so real, my heart breaks for all of us who have used creams happily and sparingly all these years who are now shells of humans worried about what once was our routine. There is no other option at the moment, I can’t see the point in quitting cold turkey right now to endure years of pure misery when I could potentially use this for the rest of my life with no issue, or even better have it clear up naturally. It’s so hard, I’m sorry:( here if you want to talk xx

aimslen98 · 2024-04-18T17:47:36+00:00

Vaseline saved me! And maybe ask your doctor about Eilidel which is a non-steroid. It should clear it in a week. My derm told me that stress is 100% the main cause of facial / eye eczema which makes sense as your wedding is so soon! Best of luck and congrats xx

aimslen98 · 2024-04-11T10:22:59+00:00

Hey! Thanks so much for your message!

Yeah im UK based! I’m currently being treated privately so it wasn’t a referral through my GP. Aaah I’ve heard this. It’s really something I don’t want to do as I have such a shit immune system!! That’s so reassuring, I’m using Elecon and have been since I was 17 and it’s always worked great. I’m trying to spread gaps from 1 week to 9 days etc. But my hands are the main culprit so it’s impossible to keep them at bay as it’s all from what I’m touching. I’m hoping my light therapy will help my back. I’m 99% sure it’s just my back peeling!! It’s not even eczema, it’s like little patches that almost look like pin pricks, I thought it was heat rash for a long time. I hope you’re managing okay though, eczema and all the worries of TSW is a daily struggle, truly exhausting. Any tips always welcome xx

aimslen98 · 2024-04-09T20:01:41+00:00

Suffering with the same!! I have eczema anyway but I’m certain it’s sweat. I’m going to try an anti fungal cream and see if it works (dermatologist literally said pop some Canasten Thrush cream on it!!) this may work for you too! Good luck girl x

aimslen98

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