Trouble with GPs

[Julia]

Hi everyone,

I'm 33 and have had eczema all my life. Struggling to cope at the moment as I can't seem to get my skin to calm down. I use E45 wash cream, oilatum cream, and then steriod cream to manage the eczema (my usual one is Betnovate RD (1 in 4)). I saw a dermatologist a few months ago who prescribed Elocon (a potent steriod) the dermo said to use it for 2 weeks, then to go to Betnovate for 2 weeks and then stop. This gave me about 3 weeks of clear skin, but then the flares just started again. I only have a tiny bit of Elocon left so trying to use it only on the worst bits. I am seeing the dermo again in a month and a half so that's good.

Generally struggling to cope and feeling low though. Cried myself to sleep last night. I have the eczema all over my body and it impacts my quality of life so much. The maintenance of my skin is so laborious and it is gutting when it still doesn't work. I feel so jealous of people with normal skin who can just jump in the shower and throw their clothes on without having to put loads of cream on. And can't imagine how amazing it must be to not itch constantly and worry about how your skin looks and feels.

Also, my GP is really awful and this does not help. She apparently has an interest in skin conditions. I saw her recently to ask for an increase in Oilatum emollient cream. She then told me I was using too much cream! All the dermatologists I have ever seen have told me to moisturise as much as possible. I'd also asked for some smaller tubes of cream (to carry in my handbag for when I wash my hands etc) and she said "but you're only supposed to use the cream twice a day". Argh! Maybe she was just getting confused with steroid cream but it is so frustrating when the person who is supposed to help you is actually just a hindrance.

I am considering trying an exclusion diet and having allergy tests.

Sorry this is just a bit of a rant, but normal life is seeming very hard at the moment.

[sueandthecity]

You poor thing.

I have to say I am not a fan of GPs. They do not really have any idea about what to do and NEVER just say so. They talk down to you if suggest something and just keep giving you the same old routine of Steroids and Moisturisers, which we all know do not work.

There are 2 articles in the Daily mail, one about how the emolients do more harm than good and the other about GPs not doing the right job.

I think common sence is the best way, you need to find out what is your trigger and act accordingly. I also read about corneotherapy which strengthens the top layer of skin making you able to deal better with flareups.

Make sure you are on non bio washing powder.
Take omega oil supplements.
Try to get Omega 6 in you cream
Avoid as much emulsifiers as possible, they are the real danger and are everywhere.

[Marcie Mom]

Do see a dermatologist or a specialist, as experience with eczema patients help physicians prescribe a treatment suited for you. Consider allergy testing too, take care!
Mei

[sueandthecity]

Marcie Mum

Julia has posted to say her Dermatologist and her GP are failing her, and you advice is go to see a Dermatologist!!!!

If they had been any good she you not be here.

Julia

Unfortunately you have to do most of this yourself, there is lots of info on the web about Eczema and its causes, you have to start researching and gain as much info as you can. Try different things because from what I have read it is different for everyone, and often changes anyway.

Be patient there is a solution for you out there, you just need to find it.

Do not be afraid to question your health professionals they are not gods who know all the answers.

Use common sence and keep records of what you did to try to track down your triggers.

[Julia]

Thanks everyone, I know everyone is trying to help and what works for some don't work for others.

It seems to be one thing after the other with me....I got very badly bitty by mosquitos on holiday a couple of weeks ago (you can imagine how my skin reacted to that), then I got a severe urticaria outbreak all over my body and was prescribed some oral steroids for a few days. I had two amaxingly wonderful days where my skin was clear and I could do all the things that people with good skin can do. But since then it has been a bit downhill...I came off the steroids a week ago and I have (self-diagnosed myself with) folliculitis. I'm pretty sure that's what it is cos of images on the web and the fact that it can be a side effect of steroids (since your immune system is compromised). Hopefully this should just go away of its own accord.

I do have faith in my dermotologist and I am due to see her in a month, so fingers crossed. My skin was actually 'under control' until about December last year. We, very unluckily, got bedbugs and the bites had a devastating impact on my skin. We got rid of the beasties pretty quickly but it took a long time for my skin to recover - in fact it never properly has. I suspect if I had tapered off the stronger topical steroids that the dermo prescribed rather than stopping abrubptly then I would've been ok.

So basically, I have had a run of terrible luck...I just hope that I can get my skin to recover and then my normal maintenance of emollients will be able to give me some semblance of normality.

[Marcie Mom]

Hi Julia,

Hope eczema will improve - there are more insect bites during summer that may trigger eczema flare-up for some. The small amount of saliva of the bite got to the skin, and an immune reaction in the skin directed against the foreign proteins in the saliva resulted in rash.

Hang in there..all the best!
Mei

[Julia]

Thanks Mei - yep, trying v hard to stay positive.

I am going to see my GP on friday as my skin just looks SO angry at the moment I think it is a bit infected. I got some Oilatum Plus for the bath which has helped a little bit (it has anti microbial ingredients so helps to fight the staph bacteria we eczema sufferers tend to have lots of on our skin). And I have splashed out and ordered some Dream Skin garments - I heard about them via another eczema sufferer's blog. So hopefully this will keep me going till I see the dermatologist.

And yes, like you say - insects & the summer = BAD news for skin if you get bitten. I'm sad to say that I am super excited that summer is almost over. The heat does not help my skin either. My poor skin just needs a long recover time from all the stresses it has been through this year - fingers crossed autumn will be kind to it.

Thanks very much for the support. It is good to have others who understand.

[Jimbob]

When you see the Dermatologist next it might be worth getting him/her to write a letter to the GP requesting a certain amount of emollient per month to be prescribed. That way you should not have any issues getting the amount you need.

The GP my son is under openly admits that I know more about eczema than he does. My son is also under a Paediatric Immunologist who my son receives great care from.

[Marcie Mom]

Yes agree and something I've learned from an interview I did with a dermatologist at Harvard residency is not to be afraid to set expectations of the skin after the prescribed treatment, and don't be shy to call up the doc if you don't see it working. Another doc told me that if one prescription didn't work, tell the doc and work with one you can trust who will monitor and adjust.

All the best and weekend's near
Mei

[Julia]

thanks jimbob and Mei - good advice! I shall get the dermatologist to do that...and your totally right about being persistent. Not sure if either of you have eczema as well as your kids but as an adult living with it, we've often been told it's not curable, you have to learn to live with it, and from one GP (I kid you not) "it's just a rash", and so I tend to often just suffer for quite a while before I accept that the treatment isn't working. Plus of course getting time of work for appointments is difficult - people tend not to view eczema as serious so getting employers to understand can be hard. I do wish there was more understanding of just what having eczema means and how much it can affect the way you live your life.

Jimbob - are you in the UK? I only ask cos I would really like to see if an immunologist could help me and I am wondering how hard it is to get referred? Any advice? Should I ask my GP or my dermatologist?