Please share your experience with these treatments
Posted Fri 24 Nov 2023 19.42 by Heath1991
Hi, it’s my first time posting on here, I’m at a loss. For the past year I have had guttate psoriasis covering 80-90% of my body. Have tried all the creams via gp and had my first dermatology appointment yesterday. The only problem is I’m breastfeeding my 2 year old.
I can either start cyclosporine, but I would need to stop breastfeeding, the dermatologist said due to breastfeeding they could go straight to Biologic injections which would take about 3 months to commence, or I could go on the waiting list for UVB. I have had UVB 10 years ago, it did work, but there is a risk of skin cancer in the family and now I work and have 2 young children, going to the hospital 3 times a week would be incredibly difficult. I would do it though.
Can anyone please share their experience of either cyclosporine or biologic injections?
Thank you x
Hi
I also had a high coverage of guttate 80/90%
I was put on biologics Cosentyx 300mg, I couldn’t believe my body was clear within 3 weeks, I’m so grateful, Iv just had my 13th injection
Good luck I wish you all the best.
Posted Fri 24 Nov 2023 20.21 by Heath1991
Thank you for your reply summer!
How long do you have to take the injections for? Have you gotten more colds/flu/illnesses since starting please?
I hope yours stays at bay! It really is horrible to live with x
1Posted Fri 24 Nov 2023 20.50 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
Biologics all the way. Targeted treatment rather than affecting the whole immune system, has to be the better option.
Posted Fri 24 Nov 2023 21.02 by Summer
Iv had no problems at all, before biologics I was on methotrexate it wasn’t helping. And wasn’t suiting me
I have to do an easy injection every 4 weeks, like a epi pen
I really couldn’t believe how quick it cleared my skin, and helped my joints.
My injection gets delivered to the house,
I also have psoriatic arthritis,
No colds Iv been no different since taking the Biologics
Good luck x
Posted Fri 24 Nov 2023 21.25 by kiloran From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023
I have a cousin on ixekuzimab long term, that's a monthly biologic and it's done wonders - he's had psoriasis for 50+ years and it's transformed his life. Just does a self- injection once a month with an epi-pen type injector.
However, it won't be that one you'll be prescribed because you can't breastfeed on it. There are others which are fine though.
Posted Sat 25 Nov 2023 09.52 by lizziep (edited Sat 25 Nov 2023 09.56 by lizziep)
Hi Heath1991
I was on cyclosporin for quite a few years and it worked well for me. I chose to be on in during the summer and then come off it during the winter as I was reluctant to take it the whole time. I haven't had biologic injections. My miracle was from Skilirence which has always kept me completely free - I've been on it for 20 years, although I again chose to come off it during COVID. I totally agree about Light treatment - wonderful while if works but a nightmare to fit into your life and it comes back shortly after stopping - also I was told at the time that I had had the maximum lifetime dosage allowed (this was 30 years ago - but when I mentioned htat to my dermatologist recently, she looked totally blank, so it presumably is no longer 'a thing'
Thank you for the replies everyone.
The consultant is ringing me next week to ask what I have decided on and all your replies are giving me something to think about.
Much appreciated x
Posted Sat 25 Nov 2023 12.42 by mt382
Honestly, I think it depends on the biologic. Having said that, they almost universally improve disease and quality of life much more than methotrexate and cyclosporin.
I've been under a few dermos (and am a medical student) and cyclosporin is regarded as one of the worst in terms of how it makes you feel and effects your life. It's a calcineurin inhibitor. Calcineurin is involved in the pathway for T cell activation, so the mechanism of action is stopping t cell proliferation.
Having fewer T cells is obviously quite a big thing in terms of your overall immune function.
Biologics tend to impact a single chemical, which a single type of cell secretes.
For example, a common one targets IL-17 and IL-23. These are (mostly) released by Th17, a TYPE of T-helper cell (which is in itself a subtype of T-cells generally). See the difference? One knocks out an entire cell line, one targets a specific chemical released by only a few specific cell types within that line, leaving them to otherwise function normally.
Serious infections are a theoretical risk of all these therapies, but honestly, the reality is that biologics don't really make infections more frequent or worse in those taking them. There was actually a (halted) trial for adulimumab (which actually has quite a broad immunosuppressive impact, compared to other biologics) in terms of using it in nursing homes to PREVENT serious covid. The trial was never completed but anecdotally, these therapies seem to prevent that runaway inflammation that is your bodies response to these infections, which is often worse than the disease itself
Posted Sat 25 Nov 2023 20.51 by Heath1991
Thank you for this, explains it really well!
Why do NICE guidelines say to try 2 systemic treatments first? Is it due to cost?
Posted Sat 25 Nov 2023 21.13 by Summer
I was told
I had to try two first, and fail two before i could get funding for Biologics I was told this treatment cost thousands, I priced my injection £1, 200.00 each injection, the methotrexate costs pence per tablet
It’s terrible when something can turn your quality of life round so quickly
But it comes down to funding,
I was told I could have light therapy just before methotrexate
Then I was told I wasn’t bad enough, so I bought my own bed from much better skin, it did help clear my skin,
The biologics is a much kinder option, in my opinion
Posted Sun 26 Nov 2023 21.10 by mt382
Hi,
Yeah - for the most part it's cost. Biologics have less long term safety data (but short term is better than other systemics, so you can extrapolate)
The fact is that for most, methotrexate, cyclosporn etc will work for a while, so at least you can try that and then move to biologics later.
If isn't the dermatologists fault, or even the NHS generally. I'm about to start one. It's 3600£ish per injection. Can you imagine if everyone who's currently stable on methotrexate and cyclosporin just switched from 1£ per 24 days, to 3000£ per 48 days. It would just smash the NHS up. Biologics will become cheaper with time though, and no doubt we'll move in that direction
Posted Sun 26 Nov 2023 23.07 by Heath1991
Hi, thank you for the reply.
I think I would be more keen to try cyclosporine if I wasn’t breastfeeding.
Can i please ask how you found both cyclosporine and methotrexate?
I know cost is a major factor for the NHS, I was wanting to know if there were other reasons, apart from cost, that tablets were recommended first.
Thanks again.
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