Psoriasis

Gael23 · 01-04-2021 9:02pm

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

dahat · 01-04-2021 9:02pm

Yes, today.

Gael23 · 01-04-2021 9:18pm

dahat wrote: »

Yes, today.

What are you on?

dahat · 01-04-2021 9:56pm

Gael23 wrote: »

What are you on?

MTX & Enbrel for some years now.

nibtrix · 01-04-2021 10:19pm

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!

suttonboi1 · 02-04-2021 8:37am

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.

eeloe · 02-04-2021 11:19am

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.

Shoneen · 04-04-2021 10:05am

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.

suttonboi1 · 07-04-2021 9:23am

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?

suttonboi1 · 08-04-2021 10:15pm

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.

The DayDream · 11-04-2021 2:49pm

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.

Bojill · 11-04-2021 3:31pm

The DayDream wrote: »

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.

rubadub · 11-04-2021 4:13pm

The DayDream wrote: »

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.

Gael23 · 11-04-2021 5:02pm

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.

suttonboi1 · 11-04-2021 11:07pm

Gael23 wrote: »

It can take a while but hang in there.

Patience is not a virtue I am blessed with unfortunately

Gael23 · 12-04-2021 7:55am

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

eeloe · 12-04-2021 9:03am

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.

suttonboi1 · 12-04-2021 12:34pm

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.

suttonboi1 · 13-04-2021 9:17am

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.

eeloe · 13-04-2021 4:53pm

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.

suttonboi1 · 13-04-2021 10:44pm

eeloe wrote: »

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.

Maybe I am just seeing something that I want to see but I think there are some improvements already.

Another shot this week, which strangely to say I am looking forward to as it hopefully means more progress.

eeloe · 14-04-2021 11:26am

I'm due my shot tonight, looking forward to it also, because i'm having some tiny flare ups!

Gael23 · 14-04-2021 11:15pm

eeloe wrote: »

I'm due my shot tonight, looking forward to it also, because i'm having some tiny flare ups!

How often are you getting it now?

eeloe · 15-04-2021 8:17am

suttonboi1 wrote: »

Maybe I am just seeing something that I want to see but I think there are some improvements already.

Another shot this week, which strangely to say I am looking forward to as it hopefully means more progress.

Gael23 wrote: »

How often are you getting it now?

I was getting 45mg every 12 weeks, still getting 45mg but every 8 weeks now.

I have a feeling he's going to move me up to 90mg and bring it back to every 12 weeks at our next appointment in July, i was always borderline on the weight limit for the 45mg dose.

suttonboi1 · 15-04-2021 9:40am

eeloe wrote: »

I was getting 45mg every 12 weeks, still getting 45mg but every 8 weeks now.

I have a feeling he's going to move me up to 90mg and bring it back to every 12 weeks at our next appointment in July, i was always borderline on the weight limit for the 45mg dose.

Have you always been on a 12 week rotation?

I am on 40mg every two weeks now again. Was the same a few years back when I was on it for 2 years, rotation never changed even though I was fully clear. Different medication I know but thought my Derm might have pushed out the injection interval but never did.

suttonboi1 · 15-04-2021 10:29am

Can anyone tell me what is the situation with vaccines here for people on immunosuppressant medication? Should I be offered a vaccine outside of the normal aged rotation due to being “high” risk? If so who is in charge of ensuring that, consultant or GP?

Background is I only started on Adalimumab last week so not sure if I have missed any list that I should have been on.

Any insights greatly appreciated.

nibtrix · 15-04-2021 11:01am

suttonboi1 wrote: »

Can anyone tell me what is the situation with vaccines here for people on immunosuppressant medication? Should I be offered a vaccine outside of the normal aged rotation due to being “high” risk? If so who is in charge of ensuring that, consultant or GP?

Background is I only started on Adalimumab last week so not sure if I have missed any list that I should have been on.

Any insights greatly appreciated.

According to this link, there is no evidence that Biologics put you at higher risk for Covid - https://www2.hse.ie/conditions/coronavirus/weak-immune-system.html

For the vaccine rollout, the specification for cohort 4 for immunosuppression by medication is:

treatment: - included but not limited to Cyclophosphamide, Rituximab, Alemtuzumab, Cladribine or Ocrelizumab in the last 6 months

This seems to have been interpreted differently by different consultants/departments. I have heard of several people on various Biologics who have already gotten their first jab, but my own rheumatologist told me they are only putting people on Rituximab on the list. Maybe the people who already got listed have other co-morbidities, or maybe their consultant acted differently. No way to know unfortunately.

Cohort 7 includes:

Immunocompromise due to disease or treatment, for example: high dose systemic steroids (as defined in Immunisation Guidelines for Ireland Chapter 3), persons living with HIV.

Again, that's very open to interpretation. Are they referring to https://www.hse.ie/eng/health/immunisation/hcpinfo/guidelines/chapter3.pdf only for the definition of "high dose systemic steroids", or are they saying all conditions in Chapter 3 are included - biologics are in section 3.8 Immunomodulatory treatment.
My consultant said they may be including people on biologics/methotrexate/combination treatment in cohort 7, but that they haven't yet been informed of exactly what to do.

The bottom line seems to be that no-one can tell you for sure except your own doctors. You may need to get in touch with them and ask. You could also contact your GP and ask if they are putting you on the list, or even if they can put you on a backup list if they have leftover vaccines after completing the over-70s.

dahat · 15-04-2021 11:46am

My consultant said they may be including people on biologics/methotrexate/combination treatment in cohort 7, but that they haven't yet been informed of exactly what to do.

I am on this combo & got vaccinated two weeks along with a few others on similar meds.

suttonboi1 · 15-04-2021 11:49am

Thanks for the detailed response. Most likely would fall into category 7 it would seem and they haven’t released details on when that will commence so will hold off for now on contacting consultant or GP.

I would guess it would be a few weeks yet before it comes around. Although if they are still planning on hitting the 80% by the end of June it should be very soon.

suttonboi1 · 15-04-2021 11:57am

dahat wrote: »

My consultant said they may be including people on biologics/methotrexate/combination treatment in cohort 7, but that they haven't yet been informed of exactly what to do.

I am on this combo & got vaccinated two weeks along with a few others on similar meds.

Do you know how you managed to get vaccinated early considering your consultant said category 7 which hasn’t started yet?

Psoriasis

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