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!!!

Mind's gone blank & New treatments

Been wanting to write a blog for ages, well I say ages, just since my last blog entry. But for some reason, despite the fact I have plenty I could blog about my mind has gone totally blank and I have no idea where to start. Who'd have thought... me with nothing to say lol oh well...

It's been a bit of an up and down couple of weeks, but mainly ups I'm pleased to say. Starting with last week, I had a couple of blisters on my right leg on the inner calf and just behind my ankle (not that you needed to know that but....). Here's a couple of photos of the blisters.... I know I've said this before but I'll say it again. Some people may find the photos a bit... er... 'graphic' and I've got to admit I've always been wary of letting anyone see my skin when it's bad - one of my weaknesses, I care too much about what other people think really - but the whole point of me doing these blogs is so that it's an opportunity for me to show people exactly what it's like to have Ichthyosis (Bullous) and it's so difficult to explain when you can't 'see' me. So photos is the best way, and really I wouldn't be 'telling it like it is' if I didn't show such photos. So apologies in advance if the pics offend anyone, but hey ho this is the norm for me as regards my condition, it's the way it is and there's nothing I or anyone else can do about it so....





These blisters are now almost healed now, which is good. I've recently had an appointment at a local dermatology clinic too which went really well I'm pleased to say. I haven't seen my own dermatologist for 4 years, so I've been discharged from there. I'd been a patient of my own dermatologist since the age of 3 too! I was doing ok though as regards my skin and I really felt nothing much more could be done and I was happy with the treamtents I was on at the time. I therefore didn't want to take up appointments that could be needed by others more than myself, another reason I stopped going.

The treatment I was using was Diprobase cream which I used for several years. But more recently I've just felt it wasn't of any great benefit for me. Especially with the really bad winter we've had this year here in the UK. The cold weather has really affected my Ichthyosis drying it out much more rapidly than it usually does (which is bad anyway). I felt it was time for a change and to see if I could possibly try something new (or something new to me anyway). I couldn't see my own dermatologist as I'd been discharged, so had to be referred to another clinic first to be 'assessed' which I thought was a bit daft, but me being me went along with it as I know it's probably their usual general procedure etc.

Basically, I saw the dermatology nurse at this clinic and I can't begin to tell you how good I felt after this appointment. The nurse was great, couldn't fault her, she was so helpful and has given me lots of sample creams to try also some cream to try as my main creams. She gave me Double Base and Dermol 500 to use as a general cream all over, also to use these while in the shower or bath as a soap substitute. I then apply the Double Base straight away as soon as I get out of the bath or shower (using Dermol 600 emmollient in the bath too), then wait about 10 mins before applying the Double Base once again. The results of applying these creams has made such a big difference, and I love the feel of my skin afterwards. I feel like I can move for a start lol the joints being the most problematic, as the skin is so thick it makes mobility restricted. Using these creams also makes me feel really clean and refreshed after applying them too - with the other cream I just felt like I was applying and applying and just getting clogged up in a way (it's hard to explain really). I know these new creams I'm using will also benefit me in the summer too, as they are lotions so when applied it will feel really cool and soothing.

The only problem I do have is that the effects from these creams doesn't last very long. I'm finding that I'm having to re-apply the creams several times a day, but I tell you what, it's worth it because the benefits of how it makes my skin feel far outweigh the actual process of applying, even though it is time consuming. It's a whole new routine for me and will take time to get used to, but I'm getting there.

To help try and retain the moisture from the creams, the dermatology nurse I saw last week has suggest I try a body stocking, like a bandage stockinette but for my body. A bit embarrassing, but hey who's going to know other than me that I'm wearing it. I'm currently waiting for the stockinette to be delivered to the pharmacy so I can pick it up, as it has to be specially ordered apparently eeek! no idea how long I'll have to wait for it. The dermatology nurse also said something to me that I've never had said to me before by a medical professional... she said that if ever I needed anything or if ever I was feeling low and my skin was getting me down, that I could call her. I honestly can't begin to tell you what a relief that felt. I really felt that she was genuinely interested in my condition and fully understood where I was coming from. That's not to say I didn't feel the other dermatologists I've seen in the past didn't do the same because they've only ever done what they felt best for me, and have helped me greatly I can't thank them enough for how they've helped me over the years. But to have someone, a medical profession close to my own age that I can talk to means a lot and has boosted my confidence believe it or not. And has given me the kick I needed to get my motivation going again.

I know something else too... I'm going to go through a hell of a lot of the creams too but that's going to be another blog entry all of it's own. I feel it's important to bring up the subject of prescriptions and what we as Ichthyosis sufferers have to do, use and the amount we need etc and the fact that different places have such different rules/regulations as regards prescriptions etc. But like I say, another blog.....

Apologies for the long blog, didn't intend for it to be this long, but oh well. Thanks for reading, if you managed to get this far lol I really appreciate it :-)
Take care
Mel xx

Long Lost Friends

Well, what a couple of weeks it’s been. I’ve got behind with blogs etc again lately, mainly because I’ve been busy, but also by the time I’ve had the chance to write a blog I’m just too tired. Anyway, something happened over this fortnight and I’d like to share the story with you.

In 1982 my Mum was introduced to two families who had children with the same type of Ichthyosis as I have (Bullous Ichthyosis). One of the families had a young son with the condition and the other family had a young daughter with the condition. Even less was known about our condition then than is known now, and our parents thought they were alone in having children with this debilitating condition. That was until our consultant dermatologist introduced us in 1982.

As I was so young at the time of our meeting (I was around 4 years old), I can’t really remember much about it and therefore thought that I’d never met or seen anyone else with the same condition, until I attended the ISG (Ichthyosis Support Group) first National Day in 1998. Over the years my Mum often spoke of the families we met back in 1982 though, and she often thought of them and wondered how they were getting on. After this first meeting we sadly lost touch, and have since then been trying to find each other.

A couple of weeks ago, I received a message on face book from someone named Joanna, and it turns out it is the same Joanna that my family and I met all those years ago. We are thrilled to be back in touch with each other, and we also found out that after all these years we live not far from each other too. I replied to Joanna’s message straight away and since then we’ve kept in regular contact, catching up and have spoken on the phone a few times too. On Good Friday (2nd April) we finally met, and I can’t tell you how lovely it was to finally meet again after all this time. Now, this may sound daft to some people, but it felt like I had found a long lost sister. Even though we only met the once when we were really young, when we met on Friday it felt like we’d actually known each other all that time and hadn’t been out of touch (if that makes sense?). It was an emotional reunion for both of us as you can imagine, and we got on so well and found we have a lot of the same interests including the same taste in music (mentioning no names *cough* Darren Hayes & Pink lol)and we both love 80's music too.

We’re definitely going to keep in touch and I know we will become firm friends. We still have a lot of catching up to do, but we have plenty of time for that now. We now both have someone close to home who we can talk to, someone who understands what we go through with Ichthyosis. We are also planning to start our own kind of support group in the Manchester, Bolton and surrounding areas (as we know of a few more people affected by Ichthyosis in the area now too). In the hope that we can bring fellow sufferers together to share their experiences, offer support, information, organise events and meetings and generally just be an ear or shoulder for those affected by the condition. Just in case you haven’t seen it here’s a link to the website:

Ichthyosis Awareness Week is coming up here in the UK, and we will be doing our bit to contribute to that - but that’s another blog which will be coming soon.

I’d like to say a huge thank you to Joanna for getting in touch. I can’t tell you how happy I am that you did. You are a wonderful person and I am proud of you too. You may not realise or believe me when I say this but, you inspire me. Sorry to get all soppy but it’s true.




Thank you - Friends for life :-)