I am just back from my Dermo appointment (after a 7 month wait) and finally been told that I can start taking tablet medication for my P. My Dermo wants to start me on Apremilast which I will be collecting this afternoon and will start it tomorrow. I will not lie I’m slightly concerned as almost every single person appears to have had really bad side effects but from what I have also read is that it does have a good chance of working if you can through the first few weeks. My dermo said that we will review this in 6 weeks to see how the side effects have been and progress, if I’m not happy on this she will move me into MXT.
Im hoping I get lucky with this but as like everyone with P, we’ll try anything to clear it! Has anyone had really good success with it? Would be nice to hear some success stories!
Posted Tue 9 Nov 2021 19.43 by Tink
Hi I was prescribed apremilast by my dermo at end of august - I was covered in p and now I’m happy to say apart from a couple of tiny patches I’m clear - I was a bit nervous of taking it but thought if I don’t try I’ll never know (I’ve tried other meds like mxt and acitretin which didn’t help but I know everyone is different in their reactions when it comes to p) I did feel nauseous after first couple of weeks but it didn’t last and now I feel great and can’t believe how lovely my skin looks now.
Good luck in your quest I think you just have to roll with the side effects in the early weeks then it will come good.
Posted Tue 9 Nov 2021 20.43 by rapture83
Thanks for the reply and great news for you! Can I ask, while taking it did you use another other medication like creams etc….or was it just those pills only? Thanks!
Posted Tue 9 Nov 2021 21.46 by Tink
Hi I use enstillar foam and since being on apremilast I haven’t had to use it as much as my skin started to heal and crucially no p returned!!
Posted Wed 10 Nov 2021 06.52 by rapture83
Thank you, I think I’ll go cold turkey and just do the pills, moisturise my skin only! Appreciate the replies, just took my first pill there, here we go!!
Hi, just an update on this from me and for anyone else about to start this treatment! I’m on my 5th day which is me now on 30mg! On day 3 I had terrible nausea, was sick a few times and frequent visits to the toilet but since then I’ve had no symptoms at all. The only thing I would say is that after each pill, about 30mins - 1 hour later I feel slight nausea but it goes away pretty quickly, the night time pill I take I do before bed to probably sleep thru it, speaking of sleep, I’ve been having great sleeps at night since I’ve been on it! So far so good but now that I’m up to 30mg maybe things will change, fingers crossed they don’t!
1Posted Thu 30 Dec 2021 12.19 by CLAIREALLENMARGATE Im a 38yr old teacher working with challenging behavior
Just had funding approved for this
Posted Wed 12 Jan 2022 12.36 by rapture83
Hi, just an update on this, I’m currently on my 9th week, not seen any difference at all in my P, it’s not got any better at all in any areas, I know it’s too soon though so I’m not giving up hope, some people I have read it’s took them up to 4 months, my Dermo also said that last week when I had a check up. He has booked my next appointment for the start of April, if there is no change by then it’s most likely this will not work for me and I will move onto something a bit stronger. I have zero side effects from these tablets, as noted before, maybe the first few days I had slight nausea for an hour or so but now nothing at all since then, will keep you guys posted on progress!
Anyone reading this has any success with it?
Thanks
Posted Wed 12 Jan 2022 22.24 by Yacht
Some studies suggest apremilast delivers less than 10% chance of psoriasis PASI 90 (90% clearance).
Same for methotrexate, <10% chance of PASI 90.
More modern biologics, such as risankizumab at around 75% chance of PASI 90, are far more effective.
Posted Thu 13 Jan 2022 07.37 by rapture83
@Yacht oh dear that’s quite depressing stats, I was under the impression that it’s successful for most people, if not that then defo MXT! Just need to hope if I’m unlucky to be in the % bracket for actually having P then I get some good luck and end up in the % where drugs work :-(
The annoying thing is if I use steroids like for example Devobet or Enstillar Foam for about 1-2 weeks every day it does clear my P but it makes it unrecognisable but as soon as I stop it comes back within a week, it’s a nightmare applying it every day too as I have guttate p so it’s all over the place and of course it’s steroids on skin every day so ideally I want to stop that altogether!
What a nightmare! Has anything worked for you @Yacht?
Posted Thu 13 Jan 2022 15.35 by Yacht
@rapture83 -- Has your doc recommended a UVB cabinet or canopy? They very often deliver 100% psoriasis clearancce.
Two caveats, though. UVB is easy to burn the skin, so be very careful. Psoriasis can rebound quickly after the UVB sessions stop, so they may need regular top-ups in the future (within reason).
Posted Thu 13 Jan 2022 15.46 by rapture83
@Yacht I was offered the UVB treatment but I know it’s like a plaster over a large open wound so I passed on that as regular hospital trips would be a nightmare! I purchased a hand held lamp a while back, I think I may go back to it now I’m on these tablets, I didn’t have massive success with it before but it was hard to keep doing as it took forever! The large lamps you speak off, I would love them, quite expensive but could be worth it! Thanks
Posted Thu 13 Jan 2022 16.16 by Yacht
Yes, UVB is hard to stick to, and a home canopy / cabinet is £1-6k.
But UVB does offer one of the highest chances of 100% clearance.
Some folks take out a small loan to buy a UVB canopy or cabinet.
To my mind, the handheld UVB lamps are pointless for anything more than (say) 5 small red spots. They take too long, and their coverage beam is tiny. A cabinet or canopy has a much (much) bigger UVB beam, and makes compliance much easier. Just stand in the box for a few seconds every 2-3 days.
1Posted Fri 11 Mar 2022 07.30 by rapture83 (edited Fri 11 Mar 2022 07.54 by rapture83)
Hi Guys,
Just an update on this, so I’m currently on week 19 of Otezla/Apremilast and after seeing next to no improvement the whole time and being slightly concerned I think I’m now starting to see some results! Basically every single patch on my body has went a light pink colour and the smaller spot-like patches on my legs are more or less unrecognisable, more a slight bruised colour but nothing that looks strange. I’ve basically been taking a pill in the morning when I get up and one before I go to bed every single day for these 19 weeks, the odd day I’ve missed as I’ve forgot or been away but only the odd occasion. I moisturise every single morning after my shower too. The only side effect I’ve had as mentioned before were right at the start, nausea, sickness and headache but it was for about 2 days max and that was me and it wasn’t unbearable, just annoying more than anything!
I’m not getting too carried away as I’ve been in this situation before with steroids and then it comes back but on my skin this is all I’ve been taking this time, no steroids, just these pills and this week everything is all pink, I will keep you posted if anything changes but if this is working, for the sake of taking 2 pills a day, 100% do it!
I still use Diprosalic on my scalp as that little bottle of joy has kept my scalp clean and healthy for years, scared to stop using it, it does no harm anyway, just keep me flake and red patch free!
Cheers!
Hello!
Can’t remember what week I’m on now but it’s a lot, just an update on the last time, I was seeing some slight changes, patches with less red than before but still there but I’ve had a huge change the past week. My wife is expecting this week so for the past 4 weeks I’ve been on zero alcohol, in on the 4th week week and I’m around 80% skin clear, I can slightly see where the P was but only to my eyes! I still have some patches on my upper legs and spots on my back but they are pinkish colour!
I just wonder if me drinking alcohol while being on this medication was stopping it’s process full working!
Posted Tue 3 May 2022 16.31 by leejacks
Thanks for the updates rapture83. Had 3 goes at Apremilast just couldn't cope with the side effects. First one lasted 6 days couldn't work and lost a lot of weight. 2nd time I manged a couple of weeks struggled to work due the nausea and diarrhoea. Had a final go lasted 7 weeks, was unemployed at the time but barely left the house due to side effects. Although the side affects did get slightly better over time. Saw no improvement in my psoriasis and had to stop the treatment as had to start a new job and I had lost around 20% of my body weight. I was on a trial and a lot of people who managed to keep taking it seemed to have some success.
Posted Tue 3 May 2022 18.03 by rapture83 (edited Tue 3 May 2022 18.08 by rapture83)
Thanks for the reply Lee and no problem with the updates, it at least gives people some sort of idea what goes on with this medication.
I’m sorry to hear that your side effects in this were that bad, I was worried at the start regarding that, I know everyone reacts different, guess I got lucky I was only a few days!.
I just checked when I first started taking this medication, it’s just shy of 6 months in total, started seeing slight changes in month 5, massive changes in month 6 so anyone reading this please be aware that this medication can take this long and you need to make sure you take it twice a day although some people I’ve read can see changes within weeks! I have made no changes to my diet at all, I still eat red meat, dairy and drink 2 cups of coffee every morning, the only change I’ve had as mentioned above are the 4 weeks off alcohol.
Also to add, if you start this medication and get over the side effects at the start and then take a few days off it down the line then expect the same side effects to happen again like before until you get past it, happened to me when I was off it for 2 days due to a weekend break.
I’ll do another update next month, curious to see if my P starts to come back when I start drinking alcohol again even when still on this medication, at least if it does I can pin point that to being the thing that triggers it off for me! Any questions feel free to ping me!
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