(not sure where the last few months of posts have gone… there wasn’t much of importance anyway)
I was at the dermatologists yesterday. I’ve had what turned out to be pretty bad eczema on my face now for the past 12 months, which has been annoying, sore and unpleasant to look at. So the dermatologists gave me some Pro-Topic (aka tacrolimus), an immunomodulator which should help my skin calm down and heal up and generally stop being so red and itchy. I’m very happy with them giving me this – I’d heard good stuff about Elidel (pimecrolimus) and was kinda hoping to get that; well Pro-Topic is Elidel on steroids 😉
That last sentence was a joke, because they are both non-steroidal topical… You normally get steroids to treat eczema… Uh… Never mind. About 3 biologists laughed.
Anyway, this stuff is the equivalent of a nuke (consultant’s words, not mine), so I’m glad to have it. They warn me a bit about a stinging / burning sensation, which I dismissed as something I could handle. I mean, my skin was getting so inflamed that even putting water on it was hurting. Also, E45 (a moisturiser) would sting for *ages*. I had it covered.
How wrong I was.
I put the ointment on before going to bed, somewhat very apprehensively, but it all seemed fine. I go to bed and am drifitng off to sleep when my left eye starts itching. So of course I scratch it it a bit, but that only makes the itching worse. Oh and scratching also spreads it a bit. I don’t need to spell out the whole sequence – suffice to say after a few minutes my whole face was itchy like never before. Oh, and this isn’t just an itch, it’s a hot itch, like someone has smeared chile around my face. This happened a couple more times through the night, except on the subsequent occasions I had the compounding factor that I was actually asleep and had been scratching for a while before I woke up.
So today, how is my skin? Well, worse. There’s no two ways about it, the scratching took its toll. However, my skin does look less inflamed, and it definitely doesn’t feel as sore as it normally would. Essentially I think if I’d been able to avoid scratching in the night, it would have been a whole ton better. So today and tonight I just have to exercise some self-contrl (easier said than done) and hopefully it shou;d start healing nicely!
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I use that product for a similar condition and although the first few days had me worried, it saved my job and possibly my social life. Don’t give up on it.
Hi Eric
Damn straight, it’s miracle stuff. It improved me overnight – literally. I’m going to do a wee follow-up so that people are aware that it is worth using.
Cheers
I get the active ingredient, Tacrolimus, compounded into white soft parrafin (WSP) in a little jar as Protopic is not available in my country. This Tacro ointment has never stung or burnt, and can be made in .03% or .1% strength depending on severity of eczema. See if you can get Tacrolimus compounded for you in WSP rather than name-brand Protopic.
JuJu:
The Protopic is essentially just tacro in WSP. I have both the .1 and .03% formulations… I guess I just have sensitive skin! 😀 Thanks for the advice though.
Hi again Robert,
What I meant to say was that Protopic, as a product that comes in a box, with a brand name, etc etc, probably has a number of preservatives or may be treated to add shelf life. As an eczema sufferer I constantly find that getting something made from first principles at a pharmacy (if possible) proves to cause less side effects than getting it with a brand label.
Another example is emollient. I get 10%WSP/10%LiqParr/10%Glyc in Aqueous Cream base (specialists call it ’10-10-10′) compounded for me by a local chemist. It is the same formula used at one of the world’s leading children’s hospitals, in my country. Causes zero irritation compared to every tub of whatever with a label that I’ve ever tried.
Anyhoo, best of luck to you. Eczema can’t kill you, so it will make you stronger!
JuJu, sorry again for the delay in replying, but I wanted to wait until I could get my hands on a formulary (in my case the BNF, the list of information on “the prescribing, dispensing, and administration of medicines” available in the UK). It would appear that Protopic is the only formulation available in the UK at the moment – no generics, no other mixtures, etc.
I could be wrong though, so if I can find an up-to-date medicines compendium (mine is from 2004) I will double-check this.
FWIW, the ingredients in Protopic are listed as:
The propylene carbonate actually *is* an irritant, but my guess is they use it as a solvent for the tacrolimus in all the non-polar stuff (paraffin, etc). It should be the second-least common ingredient, but it may have an irritant effect.
I know someone on (oral, I think) tacrolimus for other immunosuppresion, and they find it an irritant too. I haven’t had a chance to quiz them on it too much though.
—
The 10-10-10 mix sounds very good! I use plain-old aqueous cream myself, or occasionally doublebase. The doublebase does irritate more. I was using 50-50 WSP and… liquid paraffin? Damn, I’ll have to check that. Anyway, the 50-50 made my face rather greasy feeling and shiny looking, and didn’t help much. I’ve pretty much stopped using it now.
Interestingly, I think formulations like the 10-10-10 you mentioned used to be more common here. I’m not sure why they have fallen from favour. Perhaps chemists here have become more commercialised and less personalised recently. There is certainly a trend to change this back to more personalised services, but that is external, rather than from the pharmacies themselves.
Anyway, there was a story at one of the practices I worked at where the former GP, now retired, ‘invented’ (I’m sure other GPs had done their own mixes as well) a certain formulation of emollient. Something like 30-30, or 30-30-30, or something. It’s been a while since I’ve heard the story! 😉
Hi hi Robert,
Lol i didn’t expect such a back-and-forth, you have been very informative so thank you!
FYI I am not from UK but I will decline to mention my country if you don’t mind. Protopic is not available here which is probably why the hospital compounds tacro for me. But from what you listed as being in Protopic, i know that beeswax is a severe irritant for many people, pollen/honey/propolis as well. If taking it orally causes a problem as well, then who knows – maybe it’s the luck of the draw for different people. I now recall that using Elidel (Pimecrolimus) made my skin burn for a little while, then it would settle down.
Yes it is a shame that compounding isn’t available everywhere. My pharmacist says that making my emollients for me makes him feel like a real pharmacist again!
Anyhoo, best of luck to you.
J
Hi Juju
You’re very welcome! I appreciate the discussion as well; I’m curious as to how available tacrolimus is elsewhere, and people’s experience with it. For example, I am informed that in Poland Elidel is available over the counter, which implies wider use… but I haven’t heard how many people report side-effects, unfortunately.
I didn’t know beeswax is an irritant as well, so I guess there are two potential irritants in there. Well, besides the tacro itself – from your commend about Elidel I think it may be an unfortunate side-effect of the class of drug (topical immunosuppresant). I will have to corner a dermatologist and quiz them as to the whether this is the case, and if so why, what’s the mechanism, warn people more thoroughly (!), etc.
Heh, I’m not surprised your pharmacist enjoys making up formulations as I’m sure it would be the same here. Pharmacy here has become very commercial, and is perhaps becoming still moreso. (I have a friend who has just finished his degree in pharmacy, and I’m told one needs a rather large loan to start up these days – to the tune of a million quid or so.) Still, in a way it might be better that pharmacies dispense tried-and-tested therapies based on evidence, rather than something that they see works in their limited experience. I mean that in the general sense, low-risk cases like compounding emollients should be fine!
Thanks again for your comments.
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