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Psoriasis

16567697071

Comments

  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    How long had the Stelara been working before it stopped being effective? Has anyone else had the same experience.

    I’ve been on it a couple of years now, 45mg every 12 weeks and the last few months I’ve been struggling, so my dose has been moved to 45mg every 8 weeks.

    I’m getting little flares and some mild patches on my face from time to time.

    I am on the borderline for the dose tho, supposed to be 45mg for under 100kg’s and I’m floating around 99-101kg depending on the day


  • Registered Users, Registered Users 2 Posts: 4,664 ✭✭✭makeorbrake


    eeloe wrote: »
    I am on the borderline for the dose tho, supposed to be 45mg for under 100kg’s and I’m floating around 99-101kg depending on the day
    Well, this is interesting. I guess there are no free lunches. I didn't know that the biologics lost their sheen over time.


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    Well, this is interesting. I guess there are no free lunches. I didn't know that the biologics lost their sheen over time.

    I will say, i'm 99% psoriasis free tho...I just don't particularly want to go up to the 90mg dose, when i started on Stelara i had a rough couple of weeks with the side effects, and i don't want to go through that again.


  • Registered Users, Registered Users 2 Posts: 4,664 ✭✭✭makeorbrake


    eeloe wrote: »
    I will say, i'm 99% psoriasis free tho...I just don't particularly want to go up to the 90mg dose, when i started on Stelara i had a rough couple of weeks with the side effects, and i don't want to go through that again.

    I hear ya...It's been a lot of trouble to finally get on to a biologic and more trouble still to stay on one (having to travel back to one particular country every 2 months to get my shot). It's working when nothing has ever worked before with no side effects...so I'll cross my fingers and toes that scenario continues.


  • Registered Users Posts: 6,215 ✭✭✭khalessi


    I am thinking of going on biologics.

    What should I ask consultant?
    What do they consider when picking typ of biologic?


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  • Registered Users, Registered Users 2 Posts: 8,587 ✭✭✭brevity


    How long had the Stelara been working before it stopped being effective? Has anyone else had the same experience.


    About a year or 10 months. I was on Humira before that and it stopped working too. It seems to be quite common that they can stop working.


  • Registered Users, Registered Users 2 Posts: 8,587 ✭✭✭brevity


    khalessi wrote: »
    I am thinking of going on biologics.

    What should I ask consultant?
    What do they consider when picking typ of biologic?

    What other treatments have you been on? In general there are some hoops you have to jump through to get them. Steroid creams and light treatment come first. Then biologics.

    They will pick something that suits your severity and lifestyle. If you are planning on becoming pregnant it can complicate things.

    I'm a guy and a dermatologist once told me that if I was to start taking a particular drug I would have to use 2 forms of contraception if I was to have sex. I wasn't really comfortable with something like that. Never found out what that drug was but its always stuck with me.

    The drugs are no joke to be honest. "They are not cornflakes" as my current dermatologist says to me.


  • Registered Users Posts: 6,215 ✭✭✭khalessi


    brevity wrote: »
    What other treatments have you been on? In general there are some hoops you have to jump through to get them. Steroid creams and light treatment come first. Then biologics.

    They will pick something that suits your severity and lifestyle. If you are planning on becoming pregnant it can complicate things.

    I'm a guy and a dermatologist once told me that if I was to start taking a particular drug I would have to use 2 forms of contraception if I was to have sex. I wasn't really comfortable with something like that. Never found out what that drug was but its always stuck with me.

    The drugs are no joke to be honest. "They are not cornflakes" as my current dermatologist says to me.

    Done the topical meds and light treatment, was suggested at 32 for biologics, but was early days but thinking about it now


  • Registered Users Posts: 981 ✭✭✭mighty magpie


    Anyone have covid and seen their psoriasis take a hit?

    tested positive early december and i would say i've never seen mine being worse. thankfully well improved but I have stopped eating eggs and cut down on diary so maybe it wasn't covid and diet has helped.


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    khalessi wrote: »
    Done the topical meds and light treatment, was suggested at 32 for biologics, but was early days but thinking about it now

    I had Psoriasis for 10 years before I got biologics, would have been longer on,y I can’t have one line of treatment available due to an unrelated medical issue


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  • Registered Users Posts: 6,215 ✭✭✭khalessi


    Yeah avoided it for 18 years since first suggested but hard to keep it under control and just goes nuts in Winter, bad at the moment.
    ALso bad on my face along mask lines and that never happened before, at least mask hides it


  • Registered Users Posts: 20 dyl2u


    Whats everyones thoughts on biologics? have had psoriasis since I was 7, I'm now 21 and have "severe extensive plaque psoriasis" (as my Dermatologist tells me). Was on methotrexate at 17, worked amazing for the first 2 years (completely clear) but had to come off it this year because it was causing issues with my liver. My dermatologist suggested HUMIRA, but I'm unsure of it because of the side effects and all I've been reading about cases of death linked to biologics. At this stage though I'm afraid my psoriasis seems to be going back to the way it was before I was on methotrexate where my body was 90% covered.


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    I got my life back thanks to biologics.
    I hVe Crohn’s disease as well as Psoriasis but I did find Humira took its time to work on my skin, it did absolutely but it took a while.

    As for side effects, I get some sinus problems, a few extra colds and things and I do find if I’m sick with something it takes a little longer to get better. I got tonsillitis a few months ago and was out of work for a week. There is a very small increased risk of getting cancer but that’s why you have regular blood tests and all it’s always the benefit far outweighs the risk


  • Registered Users, Registered Users 2 Posts: 4,664 ✭✭✭makeorbrake


    dyl2u wrote: »
    Whats everyones thoughts on biologics? have had psoriasis since I was 7, I'm now 21 and have "severe extensive plaque psoriasis" (as my Dermatologist tells me). Was on methotrexate at 17, worked amazing for the first 2 years (completely clear) but had to come off it this year because it was causing issues with my liver. My dermatologist suggested HUMIRA, but I'm unsure of it because of the side effects and all I've been reading about cases of death linked to biologics. At this stage though I'm afraid my psoriasis seems to be going back to the way it was before I was on methotrexate where my body was 90% covered.
    I was also on methotrexate as well as a number of other legacy psoriasis meds - none of them did anything for me. I've been on a biologic for half a year and its working well.
    Im aware of reduced immune system as a trade off - didn't know there was any considerable link to death via biologics though.


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    As Gael said, i'm in a similar mindset to him.

    Got my life back when treatment started to work. I was pretty bad case, had 80-90% coverage at my worst, and it was getting infected in places due to scratching.

    within a couple of weeks of starting Stelara i was seeing massive clearance, by the time the loading doses were complete i was 90% clear.

    Today i'm 99% clear of psoriasis and you wouldn't even know i ever had it. Since the pandemic, and the mandatory mask wearing, i can safely say i've not had a single cold or anything since then, while there is risks of a weakened immune system, the benefits far outweigh the risks.

    You're young, you need to be able to enjoy your life, get on biologics.


  • Registered Users Posts: 20 dyl2u


    Thanks for the replies guys, really appreciate it.


  • Registered Users, Registered Users 2 Posts: 349 ✭✭Bojill


    Is stelara (generic form) covered on the dps. I'm waiting for hospital appointment for first jab and getting a bit worried about the bill from the pharmacy when I hand the prescription in.
    Thanks.


  • Registered Users, Registered Users 2 Posts: 3,292 ✭✭✭0lddog


    I believe ( what a fool I am ) that this lists everything covered by DPS :

    https://www.sspcrs.ie/libr/html/monthlyproductupdate.pdf

    Is this what you are asking about ?


  • Registered Users, Registered Users 2 Posts: 349 ✭✭Bojill


    0lddog wrote: »
    I believe ( what a fool I am ) that this lists everything covered by DPS :

    https://www.sspcrs.ie/libr/html/monthlyproductupdate.pdf

    Is this what you are asking about ?

    Thanks, perfect


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    Bojill wrote: »
    Is stelara (generic form) covered on the dps. I'm waiting for hospital appointment for first jab and getting a bit worried about the bill from the pharmacy when I hand the prescription in.
    Thanks.

    I don't think there is a generic version of Stelara yet, as far as i know.

    I'm on Stelara and can confirm that it is on the DPS.


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  • Registered Users Posts: 216 ✭✭Johnny Derpp


    Another update re: Pagano diet.

    I now have no plaque psoriasis at all. But more importantly, the swelling in my joints has gone down significantly and they don't hurt anymore. I'm very excited with this development but i'm not done yet, now i have to try re-introducing irritants to see what triggers but i think i'll try some allergen tests to speed it up.


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    Another update re: Pagano diet.

    I now have no plaque psoriasis at all. But more importantly, the swelling in my joints has gone down significantly and they don't hurt anymore. I'm very excited with this development but i'm not done yet, now i have to try re-introducing irritants to see what triggers but i think i'll try some allergen tests to speed it up.

    Great job. Took some dedication to get there I’d say!


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    Another update re: Pagano diet.

    I now have no plaque psoriasis at all. But more importantly, the swelling in my joints has gone down significantly and they don't hurt anymore. I'm very excited with this development but i'm not done yet, now i have to try re-introducing irritants to see what triggers but i think i'll try some allergen tests to speed it up.

    How does that make your digestive system feel? I guess it keeps you fairly regular!


  • Registered Users, Registered Users 2 Posts: 32,382 ✭✭✭✭rubadub


    Another update re: Pagano diet.

    I now have no plaque psoriasis at all. But more importantly, the swelling in my joints has gone down significantly and they don't hurt anymore. I'm very excited with this development but i'm not done yet, now i have to try re-introducing irritants to see what triggers but i think i'll try some allergen tests to speed it up.
    are you strictly following every bit of it?

    I am trying to cut out sugar as much as I can again.


  • Registered Users Posts: 43 suttonboi1


    I came off Humira last year as a precaution due to Covid, I am now due to start back on a biosimilar, not sure of what exactly but do others have any experience of a biosimilar to Humira? If so what is it called and what has your experience been?

    Also does going on this mean I should get the vaccine sooner?


  • Registered Users, Registered Users 2 Posts: 8,587 ✭✭✭brevity


    suttonboi1 wrote: »
    I came off Humira last year as a precaution due to Covid, I am now due to start back on a biosimilar, not sure of what exactly but do others have any experience of a biosimilar to Humira? If so what is it called and what has your experience been?

    Also does going on this mean I should get the vaccine sooner?

    Without the name of the drug it would be hard to say. I have been on Humira, Stelara, Tremfya and now Rinvoq. Interestingly, they did ask if I had been on Humira before putting me on Rinvoq.

    With Rinvoq, its a daily tablet rather than injections. I have noticed and improvement in both my psoriasis and psoriatic arthritis so happy with that. I am keeping an eye on any side effects...nothing major to report. I seemed to have developed scalp acne/folliculitis when I was on Tremfya which hasn’t gone away. It’s a nuisance.

    Regarding the COVID vaccine, I would imagine you would be placed on an at risk list due to the fact that the biologics have an effect on your immune system.


  • Registered Users, Registered Users 2 Posts: 16,826 ✭✭✭✭dahat


    Gael23 wrote: »
    Yeah then your in group 7.

    Just an update here, i'm booked for the vaccine today with a few other people on MTX also getting one over the next week or so.


  • Registered Users Posts: 43 suttonboi1


    brevity wrote: »
    Without the name of the drug it would be hard to say. I have been on Humira, Stelara, Tremfya and now Rinvoq. Interestingly, they did ask if I had been on Humira before putting me on Rinvoq.

    With Rinvoq, its a daily tablet rather than injections. I have noticed and improvement in both my psoriasis and psoriatic arthritis so happy with that. I am keeping an eye on any side effects...nothing major to report. I seemed to have developed scalp acne/folliculitis when I was on Tremfya which hasn’t gone away. It’s a nuisance.

    Regarding the COVID vaccine, I would imagine you would be placed on an at risk list due to the fact that the biologics have an effect on your immune system.

    Interesting, it is definitely an injection that I am due to be on but didn’t get much more information than that.

    Really keen to get started as experienced get results on Humira, was so stupid to come off it.

    Due to start on it next week so wonder if that will impact the timing of the vaccine, will probably fall between the cracks with the timing of it all, as wouldn’t be considered immunocompromised right now be will in a few weeks.


  • Registered Users Posts: 35 Shoneen


    suttonboi1 wrote: »
    Interesting, it is definitely an injection that I am due to be on but didn’t get much more information than that.

    Really keen to get started as experienced get results on Humira, was so stupid to come off it.

    Due to start on it next week so wonder if that will impact the timing of the vaccine, will probably fall between the cracks with the timing of it all, as wouldn’t be considered immunocompromised right now be will in a few weeks.

    I did the same thing and I felt like an idiot for going off it - particularly because the Dermatologist didn't agree with me going off it (although she understood the reasoning). When I went back they put me on Amgevita which is a Humira biosimilar and works via injection. Seems to be just as effective as Humira and I was Psoriasis free again in around 6 weeks.

    Only thing I would say that is different is that unlike Humira you don't have Abbiviecare support so there's no text reminders, used needle storage, helpline or nurse who comes out and shows you how to use it (although the injection process is the same as Humira).

    Also, little things like the prescription itself doesn't come with medi-swabs so you need to remember to but them separately.

    When I saw the dermatologist in December, she thought people on immunosuppressants would be fairly high up the list for vaccines - I haven't heard anything yet though. She also mentioned that there was a study done at the time of SARS and that people who were on Humira had been statistically less impacted than the general population. Its a different disease of course but I suppose it gives some level of comfort that Humira isn't necessarily increasing the risk around covid.


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  • Registered Users Posts: 216 ✭✭Johnny Derpp


    eeloe wrote: »
    Great job. Took some dedication to get there I’d say!
    It did, i can't believe the mood swings and energy crashes from cutting so much carbs, but i think the 'detox' was the easy part on hindsight. the trial and error of reintroducing certain foods is such a slow process.
    gael23 wrote:
    how does it make your digestive system feel
    Actually i lost alot of my 'regularity' as the intake of carbs, and therefore fibre, has changed dramatically. i go less often and it's fairly irregular.
    rubadub wrote:
    Are you strictly folowing it?
    I messed up for the first week and and a half as i wasn't excluding nightshades and white rice/potatoes.
    Like you my main focus was on sugar/processed food.
    The first two weeks was the hardest because i was realising how much sugar permeates out everyday lives and how much of what i ate depended on tomatoes.
    But once the sugar cravings passed it was just a case of getting sweet potatoes or brown rice into me at the right times of the day and then i was better able to manage energy levels.


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    Have any of you on biologics or tablets got the Covid vaccine yet?


  • Registered Users, Registered Users 2 Posts: 16,826 ✭✭✭✭dahat


    Yes, today.


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    dahat wrote: »
    Yes, today.

    What are you on?


  • Registered Users, Registered Users 2 Posts: 16,826 ✭✭✭✭dahat


    Gael23 wrote: »
    What are you on?

    MTX & Enbrel for some years now.


  • Registered Users, Registered Users 2 Posts: 1,305 ✭✭✭nibtrix


    dahat wrote: »
    MTX & Enbrel for some years now.

    Congrats!

    I’m really struggling with the patient “wait to be contacted, don’t try to get in touch with your consultant, you will be contacted for your vaccine appointment” malarkey.

    I’m also on a MTX and biologic combo, and have previously ended up in hospital with pneumonia while on it, and I’m getting stressed because I can’t find anything that says it will definitely put me in cohort 4 rather than 7!


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  • Registered Users Posts: 43 suttonboi1


    Shoneen wrote: »
    I did the same thing and I felt like an idiot for going off it - particularly because the Dermatologist didn't agree with me going off it (although she understood the reasoning). When I went back they put me on Amgevita which is a Humira biosimilar and works via injection. Seems to be just as effective as Humira and I was Psoriasis free again in around 6 weeks.

    Only thing I would say that is different is that unlike Humira you don't have Abbiviecare support so there's no text reminders, used needle storage, helpline or nurse who comes out and shows you how to use it (although the injection process is the same as Humira).

    Also, little things like the prescription itself doesn't come with medi-swabs so you need to remember to but them separately.

    When I saw the dermatologist in December, she thought people on immunosuppressants would be fairly high up the list for vaccines - I haven't heard anything yet though. She also mentioned that there was a study done at the time of SARS and that people who were on Humira had been statistically less impacted than the general population. Its a different disease of course but I suppose it gives some level of comfort that Humira isn't necessarily increasing the risk around covid.

    That’s some great news to hear there about the effectiveness of it. Really chomping at the bit to get back on it.

    Not worried about the lack of support and to be honest I found the text fairly annoying. How did you sort out a sharps bin then?

    Also do you know if you can get a injection pen or if it’s a syringe that you need to use? Had the pens with Humira and they were very useful.

    The narrative you are putting out there sounds very similar to my consultant so I would say we have the same.


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    suttonboi1 wrote: »
    That’s some great news to hear there about the effectiveness of it. Really chomping at the bit to get back on it.

    Not worried about the lack of support and to be honest I found the text fairly annoying. How did you sort out a sharps bin then?

    Also do you know if you can get a injection pen or if it’s a syringe that you need to use? Had the pens with Humira and they were very useful.

    The narrative you are putting out there sounds very similar to my consultant so I would say we have the same.

    I got a sharps bin from my local pharmacy, and they have a service where they destroy it for me when it's full.


  • Registered Users Posts: 35 Shoneen


    suttonboi1 wrote: »
    That’s some great news to hear there about the effectiveness of it. Really chomping at the bit to get back on it.

    Not worried about the lack of support and to be honest I found the text fairly annoying. How did you sort out a sharps bin then?

    Also do you know if you can get a injection pen or if it’s a syringe that you need to use? Had the pens with Humira and they were very useful.

    The narrative you are putting out there sounds very similar to my consultant so I would say we have the same.

    Amgevita is an injection pen - the exact same as Humira. I had an unused Sharps bin leftover from when I was on Humira but as the previous poster mentioned, I think you can get them from any chemist.


  • Registered Users Posts: 43 suttonboi1


    Thanks for the insights here people. Can I ask how long it took people to share seeing some improvement on Amgevita and how long to see significant improvement / nearly getting clear?


  • Registered Users Posts: 43 suttonboi1


    First two injections taken today (loading dose) of Imraldi (adalimumab) next one due in a weeks time and then every 2 weeks thereafter.

    Hopeful of seeming some improvement in the next few weeks, maybe around the end of the month. Will try to remember to post here regularly to note any chances I am seeing.

    Looking forward to getting back to shorts and T-shirt’s.


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  • Registered Users, Registered Users 2 Posts: 513 ✭✭✭The DayDream


    I've been looking for a dermatologist in Donegal or Sligo without success, it seems most are Dublin based.

    Can anyone recommend someone, preferably easy to reach with public transport from Busaras/Connolly as I'll have to take the bus to Dublin.

    Ive been on dovonex for years and had psoriasis for over 20. I also have used a home UVB lamp which is just too tedious when you have it on awkward places.

    I started a new job 6 months ago and the stress has caused my skin to flare up. It's a public facing role so i need to get this under control.

    What kind of costs are involved paying private? I have a med card at the moment, they'll probably take it off me though now that I'm working.


  • Registered Users, Registered Users 2 Posts: 349 ✭✭Bojill


    I've been looking for a dermatologist in Donegal or Sligo without success, it seems most are Dublin based.

    Can anyone recommend someone, preferably easy to reach with public transport from Busaras/Connolly as I'll have to take the bus to Dublin.

    Ive been on dovonex for years and had psoriasis for over 20. I also have used a home UVB lamp which is just too tedious when you have it on awkward places.

    I started a new job 6 months ago and the stress has caused my skin to flare up. It's a public facing role so i need to get this under control.

    What kind of costs are involved paying private? I have a med card at the moment, they'll probably take it off me though now that I'm working.

    I went to Rupert Barry at James private, it was 250 for the first consultation.
    James Hospital is on a direct Luas line from Busaras.
    I found him very good.
    Started on Stelara injections last week and can already see small signs of improvement.


  • Registered Users, Registered Users 2 Posts: 32,382 ✭✭✭✭rubadub


    I also have used a home UVB lamp which is just too tedious when you have it on awkward places.
    you could make a holder for it. Also many are sold installed in office desk lamps, which have moveable arms so they can be put in various postions. You could get one of these lamp fittings on its own and put your bulb in it (has to be the specific one with the proper fitting, I would pick if out if you have any interest).

    I found using my small one tedious too, due to the time needed. I upgraded to a large light fitting that took 2x36W bulbs. So I can do large areas and it takes less time on each spot too as the light is more intense.


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    suttonboi1 wrote: »
    Thanks for the insights here people. Can I ask how long it took people to share seeing some improvement on Amgevita and how long to see significant improvement / nearly getting clear?

    It can take a while but hang in there.


  • Registered Users Posts: 43 suttonboi1


    Gael23 wrote: »
    It can take a while but hang in there.

    Patience is not a virtue I am blessed with unfortunately


  • Registered Users, Registered Users 2 Posts: 12,123 ✭✭✭✭Gael23


    suttonboi1 wrote: »
    Patience is not a virtue I am blessed with unfortunately

    Biologics are not a miracle, it can take up to 3 months to see real results


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    Bojill wrote: »
    I went to Rupert Barry at James private, it was 250 for the first consultation.
    James Hospital is on a direct Luas line from Busaras.
    I found him very good.
    Started on Stelara injections last week and can already see small signs of improvement.

    Stelara does tend to work SUPER fast, i was clear in a couple of weeks on it.


  • Registered Users Posts: 43 suttonboi1


    Gael23 wrote: »
    Biologics are not a miracle, it can take up to 3 months to see real results

    Yes I understand that. I was on Humira a few years back and recall I did see some very quick improvements. Should have documented the chances.

    Hoping I will see a similar response here.


  • Registered Users Posts: 43 suttonboi1


    Not sure if I am seeing improvement as I am very eager to do so but today it appears like the scaling is significantly reduced. My moisturising regime is pretty good but having said that for the last few weeks I have had significant scaling and flakes which appear to be well reduced. Might be too soon and may be just the moisturiser but starting to look and feel a bit better. Here’s hoping.


  • Moderators, Music Moderators Posts: 3,759 Mod ✭✭✭✭eeloe


    suttonboi1 wrote: »
    Not sure if I am seeing improvement as I am very eager to do so but today it appears like the scaling is significantly reduced. My moisturising regime is pretty good but having said that for the last few weeks I have had significant scaling and flakes which appear to be well reduced. Might be too soon and may be just the moisturiser but starting to look and feel a bit better. Here’s hoping.

    Hey, any progress...take it!

    I remember when i started Stelara, i stopped the extreme moisturising and i still saw improvements rather quickly, again, everyone is different.


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