immunosuppressants and chicken pox

[bobbycock79]

Hi all, looking for some advice before we tackle our GP as they are not knowledgeable in this condition. My DH has ankylosing spondylitis and is taking the adalimumab biologic. In the info chicken pox is mentioned as being particularly risky . DH had chicken pox as a child but not sure whether that makes any difference? We have a nursery aged child and the pox is doing the rounds. Wondering if anyone has any experience of being exposed to CP whilst on these drugs. Should I consider vaccinating our child and would we be able to get the vaccine on nhs due to living with immunocompromised person? many thanks

My consultant told me the same thing. I am on immune supression pills.

No idea why though.

I'm on adalimumab for ibd. I decided to vaccinate my child, had to do it privately as not eligible on nhs due to having previously had chickenpox myself and testing positive for antibodies in the standard pre biologic bloods.

They may have checked him for chickenpox antibodies before they started him on the drugs. They did with my husband, which we didn't realise until he contacted the consultant to ask about the same thing and they said not to worry as he had the antibodies already.

Ah ok thank you that makes sense. I will tell him to ask when he next has an appointment if he’ already had the antibodies.

I just got told to keep away from anyone with chickenpox (on Anti TNFs), but a bit hard when you have a kid whose exposed at school! I can’t remember if I’ve had it or not. I think I read that you have to stop the anti TNF and start on different drugs (?antivirals) but my memory is hazy.
Your question is an interesting one, and I will be interested to find out what the answer is!

Hopefully he was tested first, because my husband was told that they test before you start on his meds so that they can give you the chicken pox jab before you start if necessary.

The risk may be to do with shingles? Not sure but I had shingles earlier in the year and had chicken pox as a child. I'm immunosuppressed.

I also gave Humiria I couldn’t get my children vaccinated on the nhs , but they did give the child who I wasn’t sure if they had ever had chicken pox a blood test to check for antibodies.
I then got my youngest vaccinated at Boots.

*take not gave

Hi,

Chicken pox can be very serious for anyone on adaliimumab and may need to have an antiviral injection ASAP if they come into contact with anyone who has chickenpox.
My daughter is on treatment for crohns disease and it was the one thing that the consultant pointed out to us on my daughter starting this drug.
Something you may want to Check with your gp or consultant.

Hi, hope someone can help. DH has had IBD for 18 years and for the last 3 it’s been one flare up after another. He has been on adilmumab once a fortnight since November and is still on mercaptopurine and Octasa. At the 12 week mark there was very little improvement and blood test showed very little meds in his system at the 12 day mark so his consultant increased adilmumab to weekly. That was almost 2 months ago and there’s still very little improvement, certainly no quality of life as he can’t get through a meal, make any sudden movements or get through the night without needing to go to the loo. Does anyone know how long it should take to see an improvement after increasing the dosage? I’m at my wits end as he is becoming more and more withdrawn and depressed. He has a phone consultation at the beginning of next month and I’m wondering do we wait to speak to them or call and let them know it’s still not working?

sorry for the length of my post. Thanks for reading x

Bugger sorry. I thought I had started a new thread…

Hi,

What an awful time your poor husband is going through and not nice for you having to sit by and having to see your husband like this.

My 16 year old daughter has crohns and she too is on adaliimumab and has been since diagnosis in Dec 2017. Each person will react differently to any medication but I would have thought your husband should have had some reaction from the drug by now. Was your husband in a flare at the time of starting adaliimumab? If so did he have treatment for the flare before starting adaliimumab? Sorry I am more clued up on the treatment for children with IBD with my daughter having crohns and I know adult treatment can be different.
I don't think your husband should wait for his call, he shouldn't have to put up with being so poorly. I would give them a call and voice your concerns.
Really hope you can get it sorted.

@SunniG thank you, I’m so sorry your daughter has crohns so young. It is so he’s watching someone you love suffer so much and being able to do literally nothing to help. DH finished an 8 week course of pred just before he started adilmumab but even then the flare wasn’t fully under control. Since then he’s just deteriorated. They upped his dosage to one a week almost 2 months ago and we can’t find any info on how long on average it takes for an increased dose to take effect. He is due his next jab on Thursday and has said that if there’s no improvement over the weekend then he’ll call the nurse on Monday. Mainly because he was up 3 times between midnight and 7am 😞

Thank you but IBD has become very big amongst young children. 1 in 200 people will be diagnosed with IBD, over 10,000 children in the UK have already been diagnosed. I didn't want my daughter to be diagnosed with any illness at all but she was so ill at the time it was definitely good to get answers. My daughter is actually one of the lucky ones because she was diagnosed and treatment started straight away. There are a lot of people walking round with what they have been told is IBS but a lot of the time it turns out to be IBD and a lot of gut damage has already been done.

With regards to your poor husband it sounds like he is still going through a flare. The problem is the adaliimumab is a maintenance drug to keep the symptoms at bay, if your husband is does have any gut/bowel damage that drug will not heal it, it takes steroids or a liquid diet to do that. Well that is the case in children not 100% sure on adult treatment. When did your husband last have scopes done and also calprotectin/stool test measurement done? I don't think he should wait to see how his next dose goes before ringing his nurse he really shouldn't be left to struggle like he is. It really sounds like he needs to be checked out. The thing to remember is everyone reacts to the drugs differently and some drugs don't always work for everyone. It could be that your husband needs to try a different drug.

I really hope he can get it sorted to free him from suffering.

I agree @SunniG I used to suffer in silence and it was the worst thing. Now I contact my team immediately and I am not afraid to go to hospital. Your DH should go to hospital if symptoms because unmanageable as he will then been given IV steroids which are must stronger and work much quicker.

My DD had chicken pox last month and I'm on Infliximab and Azathioprine. I called hospital helpline and was advised to contact GP and request anti-viral medication if I showed any symptoms. Luckily I didn't, I did have chicken pox as a child.

User72557 Good on you, you obviously know your own body and when things are not right. Always best to get things seen to in case any damage is being caused.

Hope you are well at the moment.

@SunniG thank you I am really well at the moment - I have had Crohn's since about 16 and now 33. I have completed a degree, masters, PhD and now work for a pharmaceutical company. I have got married and own my own home. I have also previously travelled the world. I was diagnosed on the operating table but now managed with azathioprine and the best weight I have ever been after low BMI all my life. I had severe Crohn's pre diagnosis and suffered for so long as a teen until I was finally diagnosed on the operating table. Getting diagnosed was the best thing and since then I have not been held back with my ambitions and dreams. Please know this for your daughter!

Oh wow what a great positive story, you sound like a very inspiring young woman.
It sounds like you went through an awful time as a teen and was probably not being listened to with your symptoms. So glad you was eventually diagnosed and treated.

Thank you for sharing your story.