Posted Sun 14 Jan 2024 13.34 by Pearl

After having psoriasis for 12years and trying all the different creams .. light treatment ..methotrexate..acitretin. Cyclosporine.etc my dermatologist decided i should come to a clinic where a meeting of approx 4o dermatologists was taking place...this was because he wasn't completely sure if I had psoriasis/eczema,,/dermatitis... I also had biopsies skin scraping and tested for lupus ...they all had a look at me in groups and then held a meeting to come to a decision..yes it was definitely psoriasis..now my dermatologist says the only way forward is biologics ..after all that I'm now worried about the side affects of these injections to a point where I feel I've no where to turn and no choice ..I have health anxiety and I feel the risk is to high ..can anyone give me any reassurance about these drugs plz ..thank you

Posted Sun 14 Jan 2024 14.24 by scouternorm (edited Sun 14 Jan 2024 14.25 by scouternorm)

depends on which biologic. My wife has been taking an injection of Tremfya for many years, every 8 weeks. It lowers the immune system, and lessens the amount of plaque, but it hasn't cleared it all up. But no adverse side effects. I had psoriasis on my hands & feet for a few years, and was prescribed various medications & creams by the dermatologist, then out of desperation started putting CBD oil on my nails & all over my feet. Whether it was coincidental or not, now my hands & feet are back to normal. Here is a link showing the extent of what I had: http://www.normtoogood.ca/psoriasis.htm Anyway, good luck & I hope that you can get some relief.

Posted Fri 19 Jan 2024 16.56 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Interesting, good to see before and after photos. Are you able to share what strength/brand of CBD oil used?

Posted Sat 20 Jan 2024 12.10 by scouternorm

I originally bought from a medical cannabis supplier, because I needed a prescription. Now, cannabis is legal in Canada, so can buy it at multiple locations. The first stuff had CBD & THC in it, but later, I only bought it with the CBD being the main ingredient. I haven't used it in a while now, but try to get some with 15-20 mg/g strength. I just rubbed it on the affected areas, in the morning & at night. I saw noticeable results in a few weeks, especially on my fingers, as the oil seemed to heal the cracks. My nails took a lot longer, but now, you would swear that I never had psoriasis! Even my thumbs are back to normal. Good luck if you try this out.

Posted Mon 22 Jan 2024 21.54 by CBMan

I've been on Hyrimoz for several years now with no side effects to speak of. Mine is for PsA for which it is pretty effective. Hyrimoz doesn't seem to be particularly helpful (for me) on my plaque psoriasis. Luckily for me light treatment has been really effective on that.

Posted Sat 27 Jan 2024 03.15 by Alan W

Hi All, i have been on Enbrel for well over 15 years with relatively good success. I have been under my wife's insurance, which covered the cost of Enbrel. Now, my wife and i have recently retired and are on Medicare, which doesn't cover Enbrel. My dermatologist is putting me on Ilumya, but i can't seem to get a clear transition time. The dermatologists suggests 30 days , Enbrel says it takes 21 days to clear my system, and another doctor says i can start it right away. Has anyone out there have any similar experience and good advise... Sincerely, Alan W..

Posted Sun 28 Jan 2024 09.11 by mt382

Hi there. Medical student and previous biomedical science graduate here. Obviously I'm not yet qualified to give medical advice and that isn't what this is- more to just show that I've got an above average understanding of the immune system, autoimmunity and how these meds work. Firstly, unless you're prescribed a really broad acting or older biologic (adulimumab etc.), side effects and impact on your immune system should be minimal. These days, biologics often target one or two specific immune chemicals called cytokines - e.g. IL-17s or IL-23. Very rarely does a study show any significant immunosuppression in those taking these. I'm on an IL-23 inhibitor and trial data showed no significant different in serious or non serious adverse outcomes between those on the treatment and placebo. Sometimes a study links biologics like these with various negative outcomes, but it's hard to isolate the effect of the injection as patients have had active psoriasis for a long time and usually tried phototherapy (skin cancer), methotrexate (liver toxicity, pulmonary issues, systemic cancer risk) etc before coming to them. Good quality trials which account for these variables show biologics to be favourable and safe. Secondly, you've got runaway inflammation in your body. That directly CAUSES an increased risk of cancer (systemically) and an increased risk of cardiovascular disease. This risk increase is not small. Using these injections to block inflammation attenuates this risk. E.g. it's not just about how your skin looks and feels, its the impact of letting an autoimmune disease run rampant, and all the inflammation associated. Thirdly, cyclosporin and methotrexate are very dirty drugs, in so far as they affect many different chemical pathways and really knock your biology for 6. They are associated, generally, which a reduced quality of life compared to modern biologics (the exceptions probably being TNF-alpha inhibitors etc, but price aside I think it's totally valid to argue that you'd rather have a newer one. Once you're cleared for the prescription then that's kind of it). I am quite pro-biologic. I think we are fortunate to have them available. Side effects are often not more frequent than placebo, and most data comes from people on the drugs reporting them (It gave me a headache or a terrible cold!) When in reality, they would have had the symptom without taking it. There's no doubt, I think, that with more long term safety data and a much cheaper price, they would probably replace methotrexate as first line.

Posted Sun 28 Jan 2024 09.13 by mt382

I should just add that if you've already been through methotrexate and cyclosporin then injections should be a walk in the park for you! I've had two doses and have felt a sum total of zero effects. If anything, feeling a bit less tired and headachy than I was before.

Posted Wed 14 Feb 2024 20.31 by JH2020

I first got psoriasis in 2019 aged 31 never had it prior. It started as small spots which got bigger redder flakier and itchier, Gp took months to figure out what it was and the dermatologist referral took about 6 months. Eventually it was confirmed psoriasis but at that point I was 95% covered I was diagnosed at that point with erythrodermic psoriasis, left untreated much longer it would’ve affected my organs and who knows what would’ve happened next. I looked more like a burns victim it was so bad. I was put on a very high dose of ciclosporin and remained on that for just over a year, it cleared my skin 99%. Been off cic since 2022. for the last 4:5 months my psoriasis been coming back as it did the first time Small red spots that get bigger (guttate) plaques on knees elbows and ankles. I’ve been taking axis biotix nearly 3 months it’s not helped at all, it may have even contributed to it getting worse (can’t prove that of course) so now I will be going on Adalimumab biologics. Does anyone have any feedback on Adalimumab if it worked didn’t work for them etc?

Posted Thu 15 Feb 2024 06.30 by mt382

It's a relatively old (compared go others) biologic. This is why it's cheaper than others (patent has expired and cheaper generics are available). It also has quite a broad mechanism of action in the body. It targets TNF-alpha, which does quite a lot in the body compared to other targets like IL-17 or IL-23. Efficacy is similar to other systemics (methotrexate and cyclosporin), though perhaps a shade better. It should work reasonably well, and as with all biologics, will work as long as your body doesn't start excessively neutralising it (months, year or years). Others can discuss their side effects which I believe are slightly more noticeable immunosuppression than on other biologics, but if you've tolerated CYCLOSPORIN, which is notoriously rough, I'm sure you'll be okay!

Posted Thu 15 Feb 2024 10.41 by JH2020

Thank you good to know, yes ciclosporine was absolutely fine and cleared my Psoriasis pretty much 100%, towards the end my blood pressure was high, could’ve been the meds or could’ve been fact we was in covid and exercise was non existent on my part, so I had to take amlodipine for a month or so however it was a small price to pay considering how much psoriasis took over my body.

Posted Thu 15 Feb 2024 12.08 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I'm also starting Adalimumab. If you're in the UK then it's the first line biologic they'll try because it's older and cheaper than the others. There are also biosimilars (generic versions) available. NHS negotiated a discount recently which dropped the annual bill from £400m to £100m. My consultant was very honest with me that it was partly a budget led decision - he could start me on it more quickly than others which would have required more approvals. If it fails then he can put me on more focused (and expensive) biologics. It's all part of the trade off between what's best and what's affordable. In my case he was able to skip the cyclosporine and methotrexate stages because my DLQI is consistently over 20 (hand and feet pustulosis). Those are dirt cheap drugs, as is Acitretin, because they're old and work system-wide.

Posted Thu 15 Feb 2024 12.12 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Should also add my cousin has been on Taltz (ixekizumab) for years, pretty much as long as it's been available on the NHS and on a different biologic before that. Other than having to shield during COVID he's had no issues

Posted Thu 15 Feb 2024 16.40 by Mim

I've had psoriasis for 50 years. At the moment it is very bad.since age 11 ish. I have been on methotrexate and also cyclosporin. I am now about to start Adalimumab - next week - and am wondering about side effects - especially weight gain. One study I read mentioned an average weight gain of 6 to 12 kg in the first 12 months . Has anybody experience of this side effect? Or any others which might be useful to know of?

Posted Thu 15 Feb 2024 17.16 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I don't think that's common - in fact first time I've heard it. It's not in the patient information sheet from the British Association of Dermatologists. Most of the side effects are slow acting ones which should be picked up by your monitoring blood tests before you have an issue - liver profile being the common one.

Posted Thu 15 Feb 2024 17.35 by Mim

Thank you

Posted Fri 16 Feb 2024 12.29 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

Just got confirmation through of which biosimilar of Adalimumab I'm going on - it's Yuflyma which was approved last year. NHS are slowly moving Humira (the original version of Adalimumab) across to biosimilars because it's substantially cheaper. Hopefully that means more of us can be accelerated onto biologics rather than ciclosporin or methotrexate.

Posted Fri 16 Feb 2024 12.37 by JH2020

I am still awaiting my Adalimumab prescription so will update you once I know what brand I’m on.

Posted Mon 19 Feb 2024 22.59 by KCsufferer

Re: CBD Oil - Wondering if any fellow Psoriasis sufferers have tried this "Elixir" and what Results ? Also, whether it can be tolerated (as well as being efficacious) in "delicate genital areas".

Posted Mon 25 Mar 2024 13.26 by Denise B

Hi everyone. I’ve suffered from psoriasis for a number of years now. Methotrexate injections kept me under control for many years but I had side effects, mouth ulcers, cold sores and fatigue. My tongue would split and tastebuds were also affected. After a few years it stopped working and I was covered again. I looked like a burns victim and was in a lot of pain. In 2020 I was put on guselkumab. It totally cleared up all the psoriasis on my body but my feet became very painful and very thick plaque psoriasis appeared. I have used so many lotions and potions and told my consultant about how difficult I was finding walking over the last 2 years. Over Christmas 2023 this spread to my hands and all my nails lifted from their nail beds. I am now on Bimzelk injections to try to resolve the problems with my hands and feet. I really do hope this works as the impact on my daily life is immense. I’m struggling walking my dogs. I can’t peel veg or do normal housework. Even washing my hair is a challenge. I don’t think people realise what an impact psoriasis can have on every day things and life in general. But I am very grateful that medication is available.

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