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Autoimmune disease

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Original poster

adalimubab - colitis, psoriasis

31 replies

Thislife55555 · 30/03/2023 22:11

Does anyone know about adalimubab biologic treatment for colitis and it possibly causing psoriasis rash on the back and torso? DP has nearly had all required injections and was doing very well but last few days nearing the final injection he's come out in what looks like a psoriasis rash. Not sure if this will subside or if it's looking like he might need to try another biologic, he was on azorhioprqne which was horrendous so we were really hoping this would work and looks to be until this rash appeared....

OP posts:

Battlecat98 · 03/04/2023 14:30

Hi my husband was on this and did indeed have rashes like this but worse on his legs, constantly scratching away. Interestingly, my DH couldn't tolerate azathioprine either. Sadly he now had to stop this injection as it has stopped working for him.

Original poster

Thislife55555 · 03/04/2023 14:32

@Battlecat98 I think my Husband may need to stop his soon too as his rashes have got worse, he's having a check wirk the nurse soon to discuss it. Has your husband started on another biologic? I think there are app quite a few they can try thankfully x x

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Orangesandlemons77 · 03/04/2023 17:33

Interesting as just came on to post about this, Dh has crohns colitis and is on this drug, has been on quite a while but just recently had this itchy scaly rash on his scalp.

I found something online from crohns and colitis foundation saying similar rashes had been found with patients on the drug

DH has got swollen lymph nodes / glands in his neck as well. Wondering if it is related.

he saw a nurse at the GPs about it who basically said see if it goes away.

Original poster

Thislife55555 · 03/04/2023 17:37

@Orangesandlemons77

It seems quite a common issue with this drug from what I've read also online, I think swollen lymph nodes mihht be an issue too, sure I saw that somewhere last night, I think long as they tell the nurse and they're monitoring it closely they will advise about changing meds I think if it's not working, just so annoying as we just need to find one that works as it's been ongoing for 3 yrs now and still trialling things xx

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Orangesandlemons77 · 03/04/2023 17:48

Yes my DH has been on it a while so it is odd it is starting now, don't want to change as otherwise it is really good

Battlecat98 · 03/04/2023 19:03

My DH has just started infusions. This is his 3rd different treatment. It gets quite wearing, we just want some stability now. DH was on this drug for 4 years and it was only this last year the rash started. It has already started to improve in the 2 weeks since he stopped. IBD is such an awful disease.
It is nice to talk to partners of people with IBD. I do look after him and support him but its hard not to worry.

Original poster

Thislife55555 · 03/04/2023 19:07

@Orangesandlemons77 That is odd and so annoying also 🙁 i think battlecat has also said the same thing below! Hubby has said there is a quite a lot of biologics left to go at tho so I'm hoping we find something soon that works for him as this has dragged on a while now xx

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Original poster

Thislife55555 · 03/04/2023 19:19

@Battlecat98 It is such a horrible disease! I always wondered about 8 yrs ago if something wasn't right just by his under eyes, my mum had noticed it also but it was only just 3 yrs ago that it came to light and it wasn't a slow onset it was rapid! We found out his nan had it so we now know where it has come from, I think the birth of our daughter may have triggered it as it was quite bad along with a terrible time after as she woke us up so much!! I think it was lingering but sadly triggered possibly due to stress. The steroids have been the most effective bit of course not the best!

Like you we just want some stability for him now, as it seems we start getting somewhre and then it turns out like we're back to the drawing board again.

The diet has been a lot also for us all to get our heads round as we abs love trying all sorts of foods so we're still getting to grips with that but atm he's just trying to avoid the worst foods and trying to eat as normal

It is good to talk to partners who undertand how it feels though as I've felt quite alone in this with other stuff also going on like my Dad whose elderly and only has me to help him etc xx

OP posts:

Battlecat98 · 03/04/2023 19:39

My DH was diagnosed 12 years ago and similarly very unwell, very quickly. I hear you re elderly parents. I feel like I am running on empty.
DH is also on steroids again and yes they are fab literally life savers that enable him to return to work etc quickly.

I have found myself worrying a lot about the future now and what might happen to him. It is so tough there are loads of treatments now but of course they don't always work. DH came out of hospital last week and was so relieved as he feared he was close to surgery but, the consultant reassured him he is not there and there are many other treatments.

MunsteadWood · 03/04/2023 21:10

I have Crohn's disease and was on adalimumab for quite a few years. I got drug induced psoriasis on it which started with ring shaped rash marks on my chest and back, then spread to scalp (triggering some hair loss). GP initially thought it was ringworm, it took a while to get to the bottom of it. It was before skin rashes were recognised as a side effect so connection wasn't made. I then had my funding cut for the drug so had to reduce dose from weekly to fortnightly, and the psoriasis went away. Weirdly I later upped the dose again, but the skin problems didn't return. Fingers crossed it clears up for your DH. I loved adalimumab (apart from this issue) as it really helped my Crohn's, but sadly doesn't seem to anymore.

Orangesandlemons77 · 04/04/2023 11:01

DH was telling me it can stop to work after a while. Something about combining it with methotrexate. (maybe helps it or something) That med concerns me the side effects etc. I wish these meds seemed a bit less scary.

Got the GPs to email the named GP about DHs swelling on humira, I'm not happy about the nurse saying just to wait and see etc. It's really unusual without any signs of infection and I'm worried about the risk of Lymphoma mentioned in the leaflet.

Hopefully not but you have to push to be seen at our GPs at the moment.

Orangesandlemons77 · 04/04/2023 11:02

PS Yes it is good to speak to others dealing with the same thing, it's not easy is it.

Battlecat98 · 04/04/2023 13:25

Correct, it does stop working that is well known and, you can take it alongside oral meds to prevent development of antibodies. Unfortunately these drugs caused my DH to have liver problems.
Does your DH have an IBD team/nurse? I think he needs to have this looked into further, it does say to observe for swelling/etc.
It probably is nothing but it needs checking. My DH didn't have anything like this.

Orangesandlemons77 · 04/04/2023 15:43

Yes, I emailed the IBD nurse and had a reply, said yes to keep an eye on it, it is probably viral reaction but look out and see if it is getting worse (I think it is, it seems to be more lymph nodes anyway and more than he has had before.)

It's also with a rash on his head, itchy, bit wierd. I copied in the GPs so they can see the email also and they said they would pass it on to the named GP.

Feels like it needs quite a bit of work NHS atm emailing etc as they don't seem to have time to.

Orangesandlemons77 · 04/04/2023 15:45

If it continues we will push for them to investigate it, take a biopsy or whatever is the next step. Have had times of being messed around by them / fobbed off in the past so being quite assertive this time. Better to rule it out and it be nothing at least we would know.

Original poster

Thislife55555 · 10/04/2023 13:18

@Battlecat98 sorry for the late response battlecat, it's been such a busy week feel wiped out. He has got an ibd nurse team and had contacted them over 2 wks ago and not heard back but since seem the dr whose prescribers a cream for query exczma but he's going to keep chasing the nurses. It's jjsy so annoying, it's a huge worry anyway seeing him looking so worn out and he didn't manage on the last meds due to liver issues, just hope he can manage on this or find something soon that works!

Our 3.5 yr old isn't helping the situation she's so full on and our intro to parenting has been a very difficult one with no family support and it's been a lot for us both to come to terms with. We never wanted an only child but due to the awful birth and very long recovery and issues since wirh her behavoir etc were both worn out and another won't happen for us sadly but then we have worries of her being an only child now heaped on top as anther new worry, it's just been nothjng like how we expected and this illness that's triggered isn't helping us either

Just can't believe this is how our life is sometimes and how unsupportive and uncaring our so called siblings are who no longer contact us, just been a lot for us both to get our heads round but I'm just so grateful for fact atm I am still able to carry on best I can for them both x

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Orangesandlemons77 · 18/04/2023 13:18

DH saw the GP today who has said thinks it is an infection but to be on the safe side has referred him on the 2WW to head and neck cancer at the hospital.

He doesn't have any more symptoms apart from the itching and raised lymph nodes. I'm anxious about lymphoma and how treatment could be combned with humira. But trying not to let my thoughts race ahead until we know the results.

Original poster

Thislife55555 · 18/04/2023 15:27

@Orangesandlemons77

Try not to let your thoughts race, it may sound more worrying than it might actually be or the Gp is being overly cautious. I think with colitis the immune system is down generally due to the meds so the lymph's if I'm right can be swollen esp if due to an infection and also if stressed/a bit run down. For now try and sit tight and try not to worry, I'll check back here also soon as I can. My partners been on his cream and so far it's been working so he's carrying on atm but I think is die bloods again soon so we'll see how that goes. X x

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Original poster

Thislife55555 · 18/04/2023 15:28

Due* is due bloods x

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Orangesandlemons77 · 19/04/2023 16:39

Hope the cream helps. DH had a text from the GP to say his blood tests are fine so that is good.

Original poster

Thislife55555 · 24/04/2023 20:20

@Orangesandlemons77 That's great news!!! I hope all is well so far still? DP rash has so far gone and he's almost done his trial on this med so looking like he might be able to stay on it but bloods will need to be done to check soon xx

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Orangesandlemons77 · 24/04/2023 20:28

That's good! We're waiting on a letter about a referral to ENT. DH still has the raised lymph nodes so they have been like that since the start of the month so over 3 weeks. He seems OK he has this odd rash on his scalp so I'm hoping it might be a skin problem

Original poster

Thislife55555 · 24/04/2023 20:42

@Orangesandlemons77 yes it could be some form of reaction with the immune system, that could possibly affect the lymph nodes etc

I hope the ent referral comes in soon so you know what's happening sooner rather than later etc x xx

OP posts:

Orangesandlemons77 · 24/04/2023 20:44

It should do as it's on the 2WW

Orangesandlemons77 · 28/04/2023 09:45

OK so now they are saying the 2WW referral has been rejected and they need more information. Not sure what the next steps are. Hoping it is just some kinf of infection / viral.

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