Treatments & Prescriptions

I thought I’d write a blog about prescriptions so that others can find out how we, as Ichthyosis sufferers go on as far as getting prescriptions are concerned, regarding our creams, emollients etc. Also in the hope that other sufferers might contribute their experiences via comments here, so we can see how different places/countries policies’ are regarding prescriptions etc. I can obviously only speak from my own experiences so here goes.

The amount of treatment/creams, emollients etc that I need is huge. Every day I need to apply creams to every inch of my body at least twice a day. That was the case when I was using Diprobase cream, which I had been using for several years up until a couple of weeks ago. I found that because I’d been using the same cream for so long, it became less and less effective in treating my Ichthyosis. In other words, I get little difference in the way of dryness of my skin once I applied the cream.

A couple of weeks ago, my routine changed and for the better I’m very pleased to say. I was prescribed two creams to try Dermol 500 (which contains an antibacterial agent/ingredient)

and Doublebase gel cream.

Through trying different methods of applying the creams over the last fortnight or so, I have found a method that works best for me. This method involves, showering/bathing using the Dermol 500 (Dermol 600 emollient in the bath) as a soap substitute, I then pat my skin dry once my skin has been rinsed. As soon as I get out of the bath/shower I then apply the Doublebase gel cream whilst my skin is still soggy. I then wait for about 10 minutes or so to allow the cream to soak in, before re-applying another coat of Double base (sounds like I’m redecorating lol). I then wait another 10 mins or so to allow the cream to soak in again, before I get dressed.

Using these creams, especially the Doublebase, my skin feels great straight after using it, and I also feel much better within myself too. I feel like I can move for a start!! When I’ve applied this cream, my skin feels really well moisturised, really clean and refreshed. I know that using these creams in the summer will help temperature wise too, because with Ichthyosis we can’t control our body temperature. The creams will help in that they will be cooling and refreshing once applied - however this coolness will not last very long at all.

Now unfortunately, due to the nature of my skin and the way it functions (or lack of functioning properly I suppose I should say), no sooner have I applied the creams I find that the second the air gets to my skin the drying process starts again immediately - even more so if there’s so much as a breeze outside. Therefore, I need to reapply more Doublebase again.

Throughout the day, every day, I need to apply the creams anything up to four or five times a day (depending on how often I need it, and how my skin is at the time). Yes, this can be a tedious and time consuming task, but the benefits of how good the creams make my skin feel makes it worthwhile to me. I don’t mind my new routine. Now I’ll be honest, it’s not easy having to keep applying the cream throughout the day especially fitting it in around everyday life and looking after my young son too, but I’ve accepted that this is my way of life. Personally, I think that once you ‘accept’ things the way they are, it’s then much easier to adapt and work with it rather than against it - if that makes sense?

As I need to apply my creams so often, I’ve found I am using one 500g tub of Doublebase in just 4 days. Therefore, regular repeat prescriptions are necessary. Thinking about it, the need for these creams is just as essential to me (or any other Ichthyosis sufferer for that matter) as any other medication is essential for anyone with a serious illness. Basically, cream is my oxygen it is my lifeline I need it to survive. I know that sounds a bit dramatic and some may think that’s taking it a bit far.... But think about it...... It’s true! Without the creams to keep any kind of moisture on my skin, well it just doesn’t bare thinking about. I have gone without cream on just a couple of occasions throughout my life, and let me tell you I paid for it!!! The agony is unbearable, skin splitting in every crease, hardly able to move especially the joints. The only way I can really describe the dryness is the feeling of chalk dust - you know the feeling of chalk dust on your fingers when you get it on your hands? Well imagine that but 10 x worse and on every inch of your body and you’ve pretty much got the jist of it.

Back to prescriptions though, when I need more creams, I need to go into my Gp’s surgery which is in town (only about a mile away so not far). I drop off the prescription slip there with the items I need ticked off the list, then I have to wait 48 hours for the prescription to be processed and signed by a doctor. I then go back to the surgery 2 days later to collect the prescription and take it to the pharmacy which is downstairs in the same building, and wait however long it takes for them to process the prescription (I’ve had to wait around 1 hr 45 mins in all for one lot before now). Then sometimes when I go to collect my items they don’t always stock it, or enough of it and I have to go back once it’s in stock - which is a bit frustrating when you really need the stuff and you’ve already been hanging around for God knows how long, make your feet sore by having a little walk into town to pass the time while you’re waiting, only to go back and find they don’t have everything and have to go back again etc. But hey-ho this is the norm for me, this is the procedure I have to follow as it’s the same as everyone else and I respect that. I’m writing about this just to inform people this is what I have to do every time I need more creams. And this whole proceedure I have to go through every two weeks, which is how often I need to order a repeat. I don’t know why though, but I feel so uncomfortable having to order so much stuff so often, like I’m a nusciance. I shouldn’t feel like that I know, but I do. It’s really difficult to explain. I’m sure there is more I could talk about regarding this subject, but I feel I’ve said enough this blog is too long as it is lol sorry folks. I just feel it’s important to let people know exactly what it is we have to do every day of our lives... Just to live pretty much, putting it bluntly. Speaking of which I need to re-apply some cream now, skin’s getting a bit tight and ‘chalky’.

So.... What is the proceedure where you live? Do you have problems? Is stock supplies a problem? Let us know, share your experiences. Don’t forget you are more than welcome to share your experiences on my website too at www.Friends-of-ichthyosis.webs.com

TTFN!!!