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Anyone had any experience with adalimumab/humira (psorasis)

(26 Posts)
Madhairday Tue 14-Feb-17 16:59:50

DD is 16 and has suffered from severe plaque psoriasis for several years. She's tried a few treatments but nothing has really helped. Her creams ease it a bit. Her dermatologist today said she is old enough to go on biologic treatment - adalimumab. She asked us to go away and research it and dd can choose if she wants to go ahead. Just thought I'd see if anyone has any experience of it. It doesn't sound very pleasant to administer although dd doesn't get phased about that kind of thing (she's hyposensitive to pain). I'm just worried about starting her on what could be long term medication with possible side effects to do with increased infections etc. But her psoriasis is so awful, she's always itchy and hates people staring which they always do.

Any experience?

rosie39forever Tue 14-Feb-17 17:58:27

Hi my DH started taking humira 4 years ago for psoriatic arthritis and psoriasis after trying lots of other medication with no effect or horrendous side effects. It has been a total life changer and has been in complete remission from the PA and psoriasis with no side effects to speak of apart from a slight headache a couple of days after injecting.
The injections are just one ever fortnight and come in pen form which are super easy to administer.
It is long term and DH will be on it for the rest of his life and is happy to do so as the alternative is a bit grim, you dd will be monitored closely and have to have regular probably monthly blood tests initially to check liver and kidney function.
Give it a go its getting harder and harder to get biologicals as they cost upward of £10,000 a year so are being rationed but once she is on them they can be tweaked or changed. hope this was helpful

Madhairday Tue 14-Feb-17 21:59:46

Thanks Rosie, that is really helpful and encouraging to hear. So glad that he's done so well on it and especially that he's in remission from the psoriatic arthritis - must have changed your lives smile

Did he start seeing results straight away or did it take a while?

I didn't realise it was so expensive shock dds dermatologist said DD would definitely be eligible. If we say yes she'll probably start in April though I'm not sure if we should wait til the summer when her GCSEs are over. Probably sensible to.

Thanks again.

rosie39forever Wed 15-Feb-17 08:46:14

It probably took about a month to work so literally after two injections and has been great ever since! If your dd doesn't suit humira there are other biologicals to try so hopefully you will see results quite quickly. X

brucebogtrotter Wed 15-Feb-17 16:01:14

Not for psoriasis, but I use humira and it's great. The jabs are hardly anything, I promise.

Madhairday Wed 15-Feb-17 17:27:36

Thanks Bruce, that's encouraging to hear. Do you find any other side effects?

Thanks Rosie. Good to know it takes a few weeks to start working.

ohbollox22 Wed 15-Feb-17 18:47:36

Have you tried Enstilar? It's a new foam treatment, has completely got rid of the plaque psoriasis on my elbows. Incredibly effective when creams and gels weren't. Maybe give this a try first?

Anatidae Wed 15-Feb-17 18:52:35

It's wonderful stuff. If she's offered a chance to try it take it!! The objections are delivered to the house and are taken every two weeks. They need to be kept in the fridge until used. They are on a pen injector system which is easy to use. It's seconds of discomfort and she will get used to it.
It's a life changer - I'd encourage her to try it. There are also oral versions in the pipeline so in the future she'd be able to use hem perhaps - however, these are a few years off so dont wait for them .

Anatidae Wed 15-Feb-17 18:54:07

As for side effects - varies person to person. There's a slight suppression of some bits of the immune system so you can be more susceptible to colds - she will be well advised to take precautions like a yearly flu jab for example.
Her doc will talk through the potential risks/benefits with her.

Madhairday Wed 15-Feb-17 22:56:48

Ohbollox - no, never heard of that, is it a prescription treatment? I will look into it. Thanks.

Anatidae - I bet they do feel like objections grin thanks for the info - it does sound fairly easy to get used to and the side effects don't sound terrible. Do you take it for psoriasis? Good to know about the fridge, would have to think of a solution for camping but I'm sure we could.

Much appreciated all.

Kathrino Wed 15-Feb-17 23:15:39

I've been on humira for nearly 5 years. It's been a life changer for me. I was 90% covered with a mix of guttate and severe plaque psoriasis before I started on it and within about 8 weeks, I was almost clear and have stayed that way ever since. I have a couple of small patches in my hair but that's it. No side effects at all, in fact I'm healthier than ever (had two colds in 5 years). They've also recently changed the ingredients and removed something that used to cause the injection to sting so now it's pretty much painless. The only annoying thing is having to work from home one day a month when they deliver it but it's a small price to pay for having my life back. Good luck to your DD, it's such a terrible condition.

Kathrino Wed 15-Feb-17 23:18:46

Also, I didn't like the pens so use the syringes instead but she should be able to choose which she prefers to use.

ohbollox22 Thu 16-Feb-17 08:40:09

yes it's prescription and fairly new. My doctor had only prescribed it once before I asked for it. I'd done a fair bit of Googling and came across it and it had great reviews so I thought I'd give it a go. Worked a treat and within 2 week my elbows which had been encrusted with thick scales were soft as a baby's bum! and it's not come back yet.
The ingredients are the same as Dovebet etc.. but it's the foam delivery method that is different. I can't praise it highly enough and I tell everyone who will listen! It's £40 a tin so also much cheaper than adalimumab.

Bloopbleep Thu 16-Feb-17 08:47:59

I had it for a different autoimmune problem and loved it. It was totally life changing. I only took it for 18months and have essentially been in remission for the past 18m off it. I preferred syringes to the pen as I could do it quicker myself but either way works well. I had no infections while on it but made sure to get a flu jab yearly asap

Kahlua4me Thu 16-Feb-17 08:58:12

My friend is on humira for psoriastic arthritis and rally happy with it. He now has no pain and feels he is back to living his life. His skin has cleared up too.

It does reduce immunity so just need to take care and perhaps have annual flu jab and maybe a one off pneumonia jab.

My dh was on it for a while for his rheumatoid arthritis but had no effect so he is now on another one which, so far, is working well. There are lots around, so if your dd tries that one and it doesn't help enough, there are others to try.

Dh is very sensitive to needles, he fainted when watching me have one once! However, he has no problems doing these himself.

Madhairday Thu 16-Feb-17 14:48:33

Thanks all!

Kathrino, wow that made a huge difference then, dd is about 80% covered, it seems to only get worse. She's had a lot of nastiness at school and called scabby and contagious, had people running away etc. The school had to really crack down on this disablist bullying but it left lasting effects on her. Such a horrible condition when doing exams too as she is so uncomfortable having to sit for hours concentrating. With dyspraxia too its doubly hard bless her. So glad it's helped you so much.

Thanks ohbollox - I'll ask about it. She uses Dovobet with an applicator which is probably the most effective cream she has though doesn't make a huge amount of difference so the foam sounds good.

Bloopbleep that's brilliant news, and that you've stayed well off it. It sounds like it works really well for many autoimmune conditions.

Kahlua - that's great for your friend, I know how disabling psoriatic arthritis is and its brilliant to hear how its worked so well for him smile definitely worth trying it and trying others if it doesn't work, as you say. Her dermatologist also mentioned an oral treatment which has literally just been released in the UK, don't know a lot about it though.

Really appreciate all your experiences. I just want dd to be better as it is such a blight on her life. She is such a lovely sunny girl who powers through and doesn't let it get to her and I just want her to be comfortable and pain free.

Madhairday Thu 16-Feb-17 14:52:31

Does anyone know much about how it effects pregnancy and feeding - just thinking about the future for her. Thanks.

Kathrino Thu 16-Feb-17 15:52:51

We're TTC at the moment and I've had many, many conversations about it. All the doctors agree that it's perfectly safe to take - humira is actually used sometimes to treat recurrent miscarriages and implantation failure because it dampens down the immune system which can lead to the body rejecting the fertilised egg.

There's no evidence to suggest that it isn't safe in pregnancy but because it hasn't been tested on pregnant women for the obvious ethical reasons, some doctors are very cautious and advise stopping it when you find out that you're pregnant, not least because the hormones during pregnancy normally mean that psoriasis goes into remission anyway. There doesn't seem to be any danger associated with it though (unlike methotrexate which is very dangerous). I've also been told that it's fine to breastfeed and take it if needed.

Kathrino Thu 16-Feb-17 15:53:51

Sorry, my message was totally unclear. An overactive immune system may lead to the body rejecting a fertilised egg and humira can in some cases prevent this by dampening down the reaction hence it being used by some fertility doctors.

MygirlKeith Thu 16-Feb-17 15:56:32

My 11 year old has been on Humira for 6 months for a different auto immune condition. She's had no side effects and aside from saying it's a bit stingy isn't bothered by injecting herself. She uses the pens and I think it just stings as it's cold.

MollyHuaCha Thu 16-Feb-17 16:23:03

MygirlKeith, I may be starting this medicine soon, as current biologic is not lasting well enough. I have been umming and aahing over how I wd feel injecting myself. But if yr 11 yr old can do it, it fills me with confidence that I can too. smile

MygirlKeith Thu 16-Feb-17 16:57:58

Molly you absolutely can. She injects methotrexate once a week and Humira every second week, she's fab!

MollyHuaCha Thu 16-Feb-17 17:30:51

What a great girl biscuit. Yes, I know I'll be able to do it if she can. Thanks for your post and give her an extra hug today, that's a lot for an 11 yr old to cope with.

Madhairday Thu 16-Feb-17 18:28:32

She sounds brilliant mygirlkeith, I will tell my dd about her. I'm so glad she hasn't had any side effects. Is it having a good affect on her condition?

Dd seems to be perfectly happy about the idea so I think she'll be fine.

Thanks for that info katherino, that's helpful. Good luck ttc!

Molly - I hope you get on well with it, I'm sure you'll do fine with the injections.

Madhairday Thu 16-Feb-17 18:30:21

Dd was on methotrexate but it had no effect on her psoriasis. Same with ciclosporin.

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