Protopic to treat eczema

[LifeIsAnArt]

My 3 year old DD had eczema as a baby, which went away more or less after she turned 5/6 months. She had short episodes of it last year but just the usual aveeno cream kept it at bay.

Around 3 months ago in May it came back with a vengeance - large areas of raw, broken skin, scratching until it bled, etc. No major changes to diet etc. so no idea what's caused it (she's had cow's milk and eggs since 1 yr old). GP says it doesn't sound like there's one single thing that's the cause so they don't offer allergy testing.

Hydrocortisone and eumovate help a lot and she's been on them the past few months, with short breaks, but we can't just keep using them - in any case as soon as we stop with the steroids, the eczema comes back. The GP has now prescribed protopic (0.03%) to use instead of steroids. My question is: DD's eczema was more or less controlled well with the Eumovate, and as soon as she stopped that and started on the protopic 2 days ago, the eczema has got conspicuously worse - her skin is itchier, and we're seeing larger, redder areas. I know protopic is meant to make the skin itchy/ uncomfortable for the first few days, but I wonder if it's normal for the eczema to get worse on protopic, post steroids, before it gets better? (Tbh it's probably more to do with stopping with the Eumovate rather than caused by protopic?) I have my hopes up for this medication, and would be grateful to hear your experiences...

By the way DD's just been referred to dermatologist, who will call in a month's time (which feels like forever right now!).

[Bringmewineandcake]

My DD's eczema definitely did not get worse when she was switched to protopic.

Is it possible that she has some infected eczema which needs treating at the same time? That's something that we encountered a couple of times.

Otherwise it might just be that the protopic isn't going to be a good match for your daughter. Which sucks, because it's an endless cycle of hope and disappointment trying to find something that works for your kids.

[LifeIsAnArt]

@Bringmewineandcake thanks for your reply! I wonder if your daughter switched straight from steroids to protopic? I'm wondering if the eczema getting worse is a result of the protopic not being as potent as the steroid previously used. Going to try for a few more days and see if there's any difference.

Also after researching online I have just found out that you're not meant to apply emollients within 2 hrs of protopic! We did protopic then emollient after around 20 mins morning and night, so will change that from tomorrow. We also used to do steroids then emollient, when it's meant to be the other way round... GP never corrected me when I mentioned these! you learn something new everyday about eczema treatment

[Bringmewineandcake]

The emollients then steroids does feel the wrong way round, doesn't it!
She would have gone from steroid cream to protopic, yes. She's been pretty clear of eczema for about 9 months now luckily (she's 4) so I'm relying on memory. She'd had hydrocortisone, eumovate, fucidin (when it was infected) and probably others that I've forgotten. It was a dermatologist who prescribed the protopic but other than that they were useless. Didn't look at her skin either at the initial or the follow up appointments, seemed very very disinterested. I think we were lucky that the protopic worked for her, combined with her growing out of it.

A lot of the emollients other people swear by didn't work for her - child's farm, la Roche Posay and others - made her skin sting. I don't think any 2 people with eczema are the same!

[mum2jakie]

I tried a protopic cream on prescription and it made so skin so painfully itchy. Apparently it improves with repeated use but I really found it so unbearable. It made my skin burn and itch worse than the eczema it was supposed to be treating!

[LifeIsAnArt]

@mum2jakie oh dear, sorry to hear that! I heard it can be one of the side effects for the first few days. Our GP advised putting the cream in the fridge, which can help prevent itching caused by protopic. May I ask how long you tried protopic for? Aside from itchiness, did it somehow exacerbate the eczema (enlarge the site of eczema, etc.)? When we switched from eumovate to protopic, my daughter's eczema seems to have worsened, becoming more red and itchy, but not to be point of being unbearable I think, just itch like the usual eczema flare. We're going to keep going for a few days and see... fingers crossed!

[LifeIsAnArt]

@Bringmewineandcake glad to hear your daughter's eczema is gone now! Such a relief. sounds like she pretty much had the same "package" as my DD, different steroids, fucidin, then protopic. How long did she use protopic for, if you can remember? And did you find out what were the main contributing factors to the eczema?

We've also tried various creams, nothing seemed to do their magic. But we're sticking with Diprobase for now.

[shipperssss]

I was signed off work around 4 years ago due to infected eczema on my face and upper body. The only thing that worked in the end, after countless other emollients, steroid creams, oral steroids, light therapy, allergy testing etc. Was protopic. I was on a higher dose than your little one but for at least the first week I cried upon application. Infact the first day I put it on I had to sit in the shower at my in-laws house for nearly an hour to get the pain to go away. It was awful and I felt like my face was on fire.

I had an amazing dermatologist, who I have only recently stopped seeing, and spoke to him asap, he reassured me it was normal and to keep going with the treatment course. He was right, within another 10 days I could apply with no problem whatsoever and I continued treatment until I fell pregnant with DD1 then used it in between falling pregnant again.

Honestly I believe it is the only reason I could go back to work again, I had had so many infections and at some points couldn't open my eyes! So I would say yes the soreness to begin with is normal BUT you no your daughter and if it continues then speak to your GP/dermatologist immediately.

Tbh, I'm surprised the gp has prescribed it as they aren't allowed in my local trust, it has to be monitored by a dermatologist.

[shipperssss]

*know 🙈

[shipperssss]

I'm also pretty sure I was advised to use nothing else on the days I was using protopic, so when treatment started I was go use it everyday, and I applied nothing else to my skin. Then as treatment progressed and I eventually (after around 3 months) went to every other day I could use an emollient/moisturiser on the days where I was not applying protopic.

[Bringmewineandcake]

DD has a CMPA dairy allergy but there's also family history from both her dad and I for eczema so it was almost inevitable she was going to get it!
I think she did 10/14 days to start with and then we've probably repeated a 7 day course maybe 5/6 times over the course of a year before she became pretty clear of eczema.

[LifeIsAnArt]

@shipperssss thanks for sharing your experiences, I really feel for you! Soo glad to hear the protopic has really helped you bring the eczema under control.

DD's protopic was prescribed by the GP but she kindly forwarded a letter from the dermatologist, whom she consulted. The dermatologist is due to call in about a month's time, that's when the first official telephone appt is. Really hope the protopic can do its magic by then.

That's interesting about use of emollients - we were told to carry on using emollients but be aware of the time needed in between applications. Sometimes DD is really itchy (particularly at night) so we feel like emollients are pretty essential at the moment!

[shipperssss]

Sorry hope you didn't think I was criticising the GP at all, just funny how different trusts have different rules!

It's so hard getting to balance right when you introduce yet another treatment but it doesn't work straight away. Fingers crossed your DD gets some relief soon!

[LifeIsAnArt]

@shipperssss don't worry, not at all. I'm considering phoning the GP tomorrow to ask for their advice since DD's eczema is visibly worse than when she was on steroids, and she is constantly itchy now (strangely she doesn't seem to get any uncomfortable sensation straight after protopic application) think the itchiness is caused by the eczema being less controlled than when she was on steroids. How long do you think it took for it to have an effect in your case? DD's been on protopic for around 6 days now.

[shipperssss]

I think it was around 10 days before I noticed any difference, I wish I had some pictures to show you but unfortunately I can't seem to find any.

[Aneta12345]

Can I please ask what about your children vaccines while on protopic ? Did you have to stop using it for a while before and after ? My son is due his MMR and also we think about chickenpox vacvine as well before he start pre school but there is a problem now as he is using protopic and they don't know what to do .Thank you .

[Darkrainbow]

My daughters on protopic for severe eczema. She's had the flu nasal spray for the first time this year, we'd previously avoided due to being told we'd have to stop protopic before and after which would of landed her in hospital. I had to speak to the lead immunisation nurse, she was then happy to give us the go ahead to have the flu vaccine without stopping. Is it GP who isn't sure about it? We have open access to our dermatology nurse specialists who are very knowledgeable, they'd be able to confirm either way.

[Aneta12345]

Darkrainbow thank you very much for your answer! My son has had a flu jab this year as well with no problems , his allergy nurse also give as to go ahead without stopping protopic . The main problem is with chickenpox vaccine wich we decided to do in Boots as it's not available on NHS . We have been told that they have to ask for permission because of protopic . His allergy nurse has to also check this out and will get back to me , but it's over a week now and still no info from anyone.Have your doughters had a MMR vaccine? My son is 3 so he is due this one as well and I'm just wondering if they will be happy for him to get it or not

[SinkGirl]

If you haven’t already I would definitely try excluding dairy. My twins both have CMPA and it wasn’t too bad when they were under 6 months but then worsened aggressively - One was moderate but one was covered in eczema head to toe, and it disappeared in a few days once we cut out dairy. Now DT2 never gets eczema and DT1 only gets it after a reaction - they must have had something with milk in at school on Friday by mistake as both bad awful nappies, painful tummies and DT1’s arms and legs are covered in eczema again.

We tried every cream we could get and nothing helped really - slight improvements but nothing significant. If they were still eating dairy it would not have gotten better.
Of course there can be reactions to other things but CMPA is the most common so I would start there. Assuming she’s not having any breast milk now, you’d need to do it for 3-4 weeks to see if things change, but in my experience we saw a change quite quickly.

Obviously keep going with the creams too but I would definitely start with this, see if it helps and take it from there. DT2 has a more serious egg allergy which showed up on skin prick tests but the dairy allergy doesn’t as it’s a delayed reaction rather than instant, and affects their guts and causes eczema mostly.

I hope you can get to the bottom of it - it’s so awful for them and upsetting for you too.

[SinkGirl]

Sorry, meant to add that allergies can suddenly worsen or newly developed out of nowhere so having previously had no issues unfortunately doesn’t mean it’s not an allergy - I developed a serious sesame and nut allergy at 10, with anaphylaxis within two reactions so you just never know!

[Darkrainbow]

My daughter had all her other routine vacancies prior to starting on protopic. We'd avoided the flu vaccine as to us the risk of her stopping protopic was greater, obviously this year things are a bit different. That said, our dermatologist and dermatology specialist nurses are truly excellent and I suddenly realised that they'd never made a big deal about avoiding live vaccines and if it was absolutely critical I know they would of done so double checked and they were happy. I then had to speak to the lead immunisation nurse as the vaccine was given in school by a private company and she needed to sign off for them to give permission for it.

[Aneta12345]

Thank you very much for your messages ! SinkGirl my son is alredy on dairy , egg and nuts free diet due to serious allergy to milk ,egg and nuts which shows on prick tests when he was a baby. He also had a anaphylaxis after eat a litlle bit of my doughters chocolate bar . Now he has prescribed epipen just in case. He is safering severe eczema from birth , taking iron suplements due to very low iron level (blood test) , blue inhaler , protopic ,antyhistamines and now a steroid nosal spray for polips and hayfever during the spring and summer time so it's pretty much ,poor litlle boy . He also has had a bacterial skin infection before which was very painful ,awful ilness ! So I really want him to get a chickenpox vaccine before he starts pre school but had no idea it will be such a big deal! Hope his allergy nurse will get back to me soon with good news !

[SinkGirl]

Oh I hope so too. One of my biggest regrets as a parent is not getting the chicken pox vaccine as it was awful for my twins - I had no idea it could be that bad. It’s so difficult when there’s a lot going on medically - one of my twins has a lot of different issues too.

Of course eczema isn’t always caused by an allergy but if it is then it makes so much difference when you find exclude it - I’m sorry things are still so tough for your little one.

[Aneta12345]

SkinGirl I'm so sorry to hear about your twins , chickenpox could be really bad . My doughter got it when she started pre school and she had only 6 spots ! After 5 days she could go back to pre school , but she has no skin problems . My sons allergy nurse told me chickenpox could be very nasty for children with eczema or /and other skin conditions that's why I want my son to get the vaccine.

[brieben]

Hi just wondering did you have the chicken pox vaccine after starting protopic. I also want my son to have it but I'm in the same boat xxx