anyone using protopics for eczema?

[Bodicea]

Have been prescribed it for my 6 month old who has severe eczema. It is by one of "THE" specialists in the dermatology world but it still scares me a bit.

Just would like to hear from anyone who as experience of it really

I use it myself around my eyes as they don't want me to use steroid cream in that area. I have also used it all over my arms and legs during major flare ups and it's the only thing that has really noticeably calmed it down for a decent period of time. Good luck :)

You used it during a flare up corpoarate? My understanding is that you use it once you get the flare up under control with a steroid. Is that not what you do?

Ah protopic. Wish I could still use this but it's not approved with bf. I encountered it when I was an adult but it was a wonder drug for me. Cleared severe eczema from my hands after bad reaction to steroids closed that route.

If in doubt contact the secretary for the dermatologist. It's a pricey option so they don't prescribe it without good cause.

I think it is the fact he is so young and keep finding stuff online about it's correlation with cancer.

If it was me I wouldn't be so synthesis but I am responsible for him and I would never forgive myself in the future if anything bad came of it.

I've been using this over the past few weeks for peri-oral dermatitis, I haven't tried it on my eczema.
BUT, what I would say is that it's made my skin VERY, very sensitive to alcohol (hopefully not a problem with a young child), but also to hot and cold, and even very small amounts of sunlight or wind. Please keep your child protected and be aware of even small changes in temperature or light.

Have you had no luck with steroids?

We have been seeing Prof Harper with my now 9 month old, and at our last appointment he mentioned it as a next step. I said no, and I will not go near it. And I'm managing fine with daktacort on his face a couple of times a week. But, your child may have much more severe eczema. It's so distressing, isn't it?

Have you tried allergy testing btw?

Am using dactacourt on his face at the mo ( in the past we have used teravrtrill, eumovate and betnovate ) elocon on his body which has cleared it up a treat. Always comes back. God I am really going off the idea. Even my specialist eczema nurse seemed a bit surprised he would be on protopics.
Allergy tests came back negative except for mild reaction to wheat but not strong enough to cut out just wean slowly.

Sorry teracortril - which was good when his face was a real mess actually.

Prior to seeing this guy we were on fusidin h for like forever and it never cleared. He has so far been on 4 courses of antibiotics for infection. Part of me thinks the infection (whether that was fungal or bacterial) never cleared and. That was why it never got better.

We seem to have got on top of it without the protopics and I started using them for a few days once he was clear but then i started reading stuff and have stopped. He has flared up again but he has a cold so that could be why.

Who are you seeing? Is it same guy as me?

I have found making judgments about how hard to treat his skin really really difficult. I've read parents saying how much trial and error is involved in treatment but it has taken me months to realise that this also incudes whether or not to treat, what degree of eczema we can live with and how to judge each day.

I have given up trying to get normal skin/completely get rid of the eczema, although that is what I was aiming at originally with PH. But it is much better and i do finally know what i'm doing.

Oh tell me about it. Everyday I look at the plethera of stuff and think which one today then. I think you are right maybe I shouldn't be aiming for eczema free completely. I need to give him a break from the steroids which is where I thought the protopics would come in but am rethinking it. It's his face which is causing me the most problems. He hasnt been free on his face for more than a day it two since he was 8 weeks old.
It's not your guy we are seeing.
You can only glean so much info in a short appointment and now not seeing him for weeks, We had intensive training with his eczema nurse but even then we ended up with contradictory ideas at the end of it. She had never heard of the teracortril for instance.
Nice to speak to someone who is in same predicament. I think it is hard for people to understand just how difficult looking after a child with eczema is. Would it be ok to pm you?

Yeah, defs. I have no idea how to pm myself but I'm sure I can pick it up!

I became totally sick of hearing different views with every gp, and even from the same gp. It's beyond infuriating when you're desperate to do the right thing for your child.

Yeah, the best I have got recently is 3 days without facial steroids. But that is what the consultant is happy with and it has to be better than waking up every day with yellow encrusted sheets and clothes.

The big consolation is that everyone saysbaby eczema resolves fairly quickly in most cases and the worst is over by the time they are one. I'm hanging on to that.

Bodicea Yes, I used it to clear the initial flare up (well, 8 week long nightmare) then used it every other day, twice a week, then once a week for a while when I felt the itch starting. Haven't had to use it for about a month now.

I've had eczema since birth and had every cream under the sun. I can remember my mum trying to hide her tears at times where it was particularly painful and she couldn't cure it for me. So I do feel your pain.

I was prescribed the 2 protopic creams recently for my out of control hand eczema. I came out in a sore red rash round my mouth and the skin around my mouth and chin seemed somehow damaged, it has taken a few weeks to return to normal and is still very sensitive. The eczema on my hands was unchanged and I'm awaiting a dermatology appointment. Sorry if my experience worries you, I've had eczema since childhood and have tried every steroid, but I was shocked at the effect of the protopics. In fairness they must be effective in many cases or they wouldn't be prescribed, but I note a poster up thread had sensitivity like me.

Thanks for replies. Still not sure if I want to get involved with the stuff.

Whiteshoes have messaged you.