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Anyone used Protopic?

(15 Posts)
rickman Sun 30-Jan-05 10:45:12

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misdee Sun 30-Jan-05 10:50:14

Are you under a consultant dermo for her eczema, if not onto GP for referral.
Protopic is relatively new, it was only liscenced in this country for use around 3yrs ago, and i have never been able to get it as its very very expensive. I have no idea about if its stops working as have never used it. It would be wise to speak to GP about it.
I have been dealing with dd1 eczema for 5years and dd2 has only had it about a year now. DD1 is atopic (eczema/asthma/hayfever etc) and i find it a constant battle with her allergic reactions all the time.

What is your routine with deasling with your dd eczema? and what else do you use on her?

And you know i'm gonna say this, but claim DLA!!

rickman Sun 30-Jan-05 10:57:34

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misdee Sun 30-Jan-05 11:02:44

I get high rate care for both my girls, but they also have other allergies as well, but ecema is the main thing we claim for.

Our routine is fairly simple now, bath each night with balneum hermal plus, wash hair maybe once a week and put on loads of emoillants during the day. Emuysifying ointment can work, but dd1 reacts to it sometimes and it leaves her skin scaley. works well on dd2 tho. The bedtime routine used to take 60mins+ including the bath.

Is your dd getting infections at all? if she is then it may be wise to ask for Dermol 500 lotion, which is anti-micro somnething or other (i'm useless with spelling lol). it helped cut down dd1 infections.

rickman Sun 30-Jan-05 11:05:39

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misdee Sun 30-Jan-05 11:07:50

the amount of time/care etc that it takes really. al lthe appointments, the creams etc etc. the sleepless nights that it causes, how long it takes to resettle her, get her comfortable at night, how you tell to stop scratching, if her hands are cracked how she cant hold a pencil, the infections etc etc. its a long list.

bunny2 Sun 30-Jan-05 15:08:13

rickman, where ru? There is a fantastic paed dermatologist at Great Ormond St who helped us when ds had the most awful eczema possible. His name is Dr David Atherton and your gp could refer you if your dd's eczema is so bad. He prescribed protopic and we still swear by it BUT he said ds's eczmea was so bad that applying cream of any sort wasnt enough to cure it so ds was given oral steroids (prednisolone) to initially clear the skin (this was almost miraculous, within days ds's skin was clear) and then to control and patches that appeared after that with protopic. We saw him 3 years ago and our ds's eczema has been controlled ever since.

rickman Mon 31-Jan-05 22:25:57

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marz Tue 01-Feb-05 19:02:46

Rickman,
Hate to be a party pooper....but apparently you can only get referred to GOSH by a hosp consult NOT through GP. However, saying that, we saw Dr Atherton and he also got our two under control. This was over a year ago now.He prescribed a mixture of steroid and Protopic....Protopic for general keeping under control and then the steroid as soon as it starts to flare up. This worked, to the point where...touch a lot of wood...infact, a whole forest...( I am so scared of a recurrence!) we are only on Aveeno for both of them, very rarely using steroid. I honestly never thought I would be able to say this....there is hope...it is just finding the right treatment. And Dr Atherton is also VERY good at reassuring you!
I also had a lot of support from board members here, they pulled me through the worst of it and for that I am really grateful!
Oh...have you ever used Diprobase ointment/creams as emolients? We still use the cream as soap, and I was using tubes of ointment as emollient for dd2, it was the only thing that stopped it getting worse, not that it made it better though!

princesspeahead Tue 01-Feb-05 19:18:10

I agree with everything Marz says - except I saw Dr John Harper at GOSH, rather than Atherton. He is the other ezcema guru. We used a combo of oral antibs, antibiotic/antifungal/steroid combined cream, protopic, baths and emollients and within a week or two the worst ezcema ever was completely under control. I now use ONLY aveeno (and diprobath in the bath) and protopic literally about 2 days every 3 months.
I strongly believe that most gps and other specialists (including allergists and paeds) are hopeless at dealing with ezcema, you need to go to a paed dermatologist, and the best two are atherton and harper. Go private if you need to - it may cost you £200 but you will probably only need one appointment and it will save you MONTHS of heartache and unnecessary steroid use on your child, I promise!

bunny2 Tue 01-Feb-05 20:56:08

just catching up - I second PPH, if you can afford it, go privately. It was the best £200 we ever spent. MArz, we did get a referral from the gp to Dr Atherton but this was after months of complaining that the Dermatologists at Barnet Hospital werent able to help ds. rickman, insist on a referral, your dd should not be suffering like this. I found that apart from Dr Atherton, no doctor we saw was that interested - they happily prescribed stronger and stronger steroids and wet wraps despite my insistence that it wasnt working. I was under the very strong impression that as eczema isnt life threatening, it is not serious but Dr Atherton was different, he was the only one who seemed to understand how it was affecting our entire lives.

marz Wed 02-Feb-05 09:45:12

I am just wondering if anyone had a similar experience to me, when dd2 was about 6months old I got my worst ever eczema on my hands, which has only cleared up about after about a year. Dr Atherton actually (jokingly) said, well, the question is whether the parents cause the childs eczema or the children cause the parents eczema??!! Apparently he said it is common for parents (who have a history of eczema/atopy) to have worsened eczema after pregnancy/children (I imagine particularly when their children are suffering with it?)
Did anyone else experience this? What could it be? Is it the stress of dealing with childrens allergies or is it a biological change in the body? If so, why did it not happen for me with dd1? How come it has cleared up?
Any thoughts anyone? I know there will never be clear answers, but I am very curious about other peoples experiences.....
Bunny2....doesn't it just show how the NHS works....I was told by GOSH and GP that they could not refer me, it had to be tertiary referral. and yet you managed it.
Also...ppp....I saw pead dermatologists at RFree and they were not particularly helpful...you really ahve to get a GOOD one...and as you say, I now have joined the DR ATHERTON ROCKS! group!
(Infact it was you who gave me lots of advice and support and gave me that kick to go and get the referral a year ago!!! THANKYOU!!!)

princesspeahead Thu 03-Feb-05 10:59:37

marz

Chandra Thu 03-Feb-05 11:14:48

Rickman, I have been using protopic on and off for a year. The only thing I can think of is that your DD's eczema is infected and I supose that using protopic in infected areas can only make it worse (as protopic suppresses the inmune reaction). DS was not responsive to hidrocortisone and Fucidin... well, if the thing is really infected I find it useless. Our dermatologist prescribed an oral antibiotic with a diferent corticoid (mometasone?) and Eucerin 10% Urea and eventhough he had been covered head to toe for 3 months the problem cleared in just 4 days. Once the infection was cleared maintaining his skin was a breeze, however we were religious about the routine: Oilatum plus in the bath every single night, a good covering of Eucerin afterwards repeated three times a day and protopic for the flares provided the skin is not infected. HTH

Another thing... go private if you can afford it, it will save you months of missery. You only need one appointment, or at least that we needed. When our GP realised that DS had got those medicines and creams prescribed by a dermatologist in Spain (and how much we were spending in the treatment) didn't hesitated in refering us to a NHS dermatologist. Since then I get everything on prescription for free, so it's really worth a try.

PS. If your DD is like my DS, who can manage to make the problem disapear as soon as he enters the doctor's office, take pictures of how bad it could get, otherwise they won't believe you, I had to show a pillowcase covered in blood for they to believe me that the thing was vicious at nights.

donnie Thu 03-Feb-05 18:56:50

I can only echo what other posters have said here rickman, we saw David Atherton at GOSH when our dd was about 8 months old . we had tried every cream known to mankind. Scratching, bleeding, weeping skin, the usual ghastly story. We went privately and yes we paid about £180 BUT the wet wrapping and creams he prescribed ( and wrote to our GP to request they carry on prescribing) worked a treat and she was clear after 2 weeks. Now she gets patches here and there but it's entirely manageable. As other people have said, it is the best £200 we ever spent- if you can, do it! good luck, I know how awful and grinding it is to have a child with bad eczema.

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