I have a problem that has me scratching my head big time. Ever heard of psoriasis? It’s an unpleasant skin condition that people tend not to talk about. Why? Because there’s nothing sexy about it and yet it has the potential to have a serious impact on people’s lives. I’ve no problem talking about psoriasis, I’ve no reason to be ashamed of it and I’m dying to find someone else who’s been down the same road.
Last January, I started to develop what looked like dandruff on my scalp. I consulted my hairdresser who recommended a dandruff treatment shampoo which she promised would be highly effective. It was useless and the scaling on my scalp continued to gradually worsen. After I’d exhausted every avenue with over-the-counter treatment shampoos, I consulted my GP for advice. He prescribed several lotions and potions but none of them had any lasting effect. Soon afterwards, I noticed that I’d developed a rash in both armpits so I went back to the doctor and came away with yet more prescriptions. When these failed to halt the rapidly deteriorating condition of my skin, I was referred on to a dermatologist. She confirmed that the skin problem is an unusual form of psoriasis, called inverse psoriasis. My sore and flaking scalp is also a form of psoriasis. Apparently, I’m in the target age bracket and with a strong family history of psoriasis, I was a sitting duck waiting for this to happen. Psoriasis is thought to be an auto-immune condition and there is also a definite genetic link to it. Frankly, my medical history is already so long, I could have done without this bolt-on extra but having said that, I’m all too aware that things could be much, much worse.
I now follow a twice daily regime of baths, treatment ointments and moisturising creams. It’s terribly tedious and time-consuming but it’s effective and as long as I follow the regime, I can keep my skin under control. The scalp condition has been another story however. It has failed to respond to the multiple treatments prescribed and at this stage, I’m getting desperate to find a remedy. So far, the dermatologist has recommended the following shampoos: Nizoral, Capasal, Elave, T-Gel sensitive and Oilatum scalp. I’ve also been prescribed Cocoid (coal tar ointment), Bettamousse (steroid mousse), and Dovenex (calcium solution) treatments. My scalp initially responds positively to every new treatment and my hopes sore only to be dashed again when it relapses shortly afterwards, no matter how long I persist with the treatment. I’m nearly driven mad at this stage with the persistent itching, dryness, flaking and soreness of my scalp. I’ve tried rubbing pure coconut oil into my scalp but again, the relief is very short-lived. I recently found an over-the-counter scalp moisturiser called Exorex. It’s an expensive product but it has calmed my scalp more than anything else so far.
At this stage, the psoriasis is having a significant impact on my life and I need to get some control over it. You could say, I’m itching to find a solution! Do you know of anyone who has suffered from psoriasis of the scalp and can you recommend a treatment that has really worked? I’ve done everything within my power to reverse the process but at the moment I’m not winning the battle. I know that a holiday in the sunshine would probably work wonders but I think what I’d really appreciate more than anything, is a long holiday from doctors.
I am unable to offer any helpful advice for psoriasis but I have noticed that the pharmacy I go to always has a display of Exorex.
You are very observant, Grannymar
My dermatologist hasn’t mentioned this product. I just spotted the Exorex scalp lotion when doing a survey of products in a new chemist shop the other day. As I hadn’t seen it before, I made some enquiries and was told that it had worked well for another customer who’d also been at her wit’s end. I’ll try the shampoo if the moisturiser continues to be effective. Psoriasis is an expensive business!
My father has been through all of the things that you mention. I have no idea if he has the same type of Psoriasis as you (probably not), but he has been through the same cream and bath routines as yourself, with no long lasting effects.
One thing that he has found that works is either sun beds or holidays in the sun!
Consider it prescribed! Where are you going to go?
Eep, that sounds very difficult to cope with. I’m sure you’ve thought of this already, but is there a link to or complicating factor with your EDS? It’s just with the skin problems we are prone to, and it being so much more fragile, I know if I were to attempt to put my skin through such shampoos etc it would end up breaking down.
BTW, some specialists consider EDS itself as auto immune and certainly that there seem to be links with other auto immune conditions
I use diprobase for my skin, which works quite well, but I’m fairly sure it wouldn’t be practical anywhere hair grows, but might be worth a try elsewhere.
I hope you find something that works very soon, BG x
Help! I can’t keep up with these comments 😀
Angry Tech – thanks, I like the sound of your prescription!. I have a holiday in the sun planned (first one in years) but it’s not until September. I was hoping for a bit of sunshine at home in the meantime but there only seems to be mildew on offer this summer! I sympathise with your father.
BG – You could well be right about the EDS. I’ve always had very sensitive skin and this may be the reason why a lot of the products seem to make the situation worse, not better. I’m more inclined to think that if psoriasis is linked to the immune system, then this break down in my immunity is more likely to be due to all the antibiotic therapy I’ve had over the years. I’ve had eight weeks of oral antibiotics already this year due to Staph A infections. It’s a vicious circle 😦
Ah Steph. My father had it on his elbows of all places and my best friend in the world has Psoriatic Rheumatoid Arthritis . . the only clue to her diagnosis was a small itchy patch in her hair. Bendy Girl is absolutely right, it’s actually an auto immune disease so building your immunity might help although I don’t know quite how you do it. My friend goes through periods of acute itchiness and joint pain cured only by cortizone steroids. My sister, who also has it (again all part of her Krohns disease and low immunity) Perhaps the steriod mousse would do the trick. Moisturise after showering as your skin is more absorbant then. Bad news too . . alcohol aggravates psoriasis as do Coke-a-Cola, red wine, red meat, MSG, chilli, hot spices, junk foods, oily foods, berries (such as strawberries) tomato, most acidic foods and vitamin-c. . . .hope you like pasta!
The comments are coming thick and fast tonight!
Baino – I’m fairly convinced my immune system is buggered at the moment and I feel fairly sure it’s the result of all the heavy duty antibiotics used to treat MRSA. My recent run-in with colitis was also accompanied by fairly severe joint pain but I still haven’t been able to find the enthusiasm to go to the doctor about it.
I’ve had loads of steroid creams prescribed and use steroid mousse also on my scalp. At first I was told to use them sparingly and then they threw masses of steroids at me but it only offers very temporary relief so it’s not the answer in the long term. I haven’t found that alcohol aggravates things so I’m obviously not drinking enough – I must try harder! 😉
Have you tried a live yohgurt (old Mc Donalds for example) after taking antibiotics
Also have a look at your diet. I am convinced it has a major impact on a persons health…plenty of organic fruit and veg.
If you can swim the sea its really good for you especillly for the skin and its healing properties
I have constant sinus proplems ((allergic rhynitis ) but swimming in the sea really helps and I also use a sinus rince andn now I am a lot better
Hope this helps
Steph, take a look here:
A combination of holiday and cure/relief?
Mike – Thanks! and I agree.
Our diet has a lot to do with our general health but there doesn’t seem to be a particular link between it and psoriasis. I eat live natural yoghurt routinely and I also eat Readybrek after every course of antibiotics as apparently, it’s a highly recommended way to re-establish gut flora. We also grow a lot of our own veg in a tiny veg patch and pick them minutes before cooking. No air miles there!
You are also right about sea water. It’s a great cure-all if you can bear the cold. I hope to make it to Connemara next weekend and will attempt a dip in the beautiful clear water there, but I’m not promising! My old ENT surgeon used to ‘prescribe’ trips to the West for the clarity of the air. Many of the ENT people these days recommend a salt water nasal douche (can be bought in chemist) as the best thing for nasal congestion and pain.
Geri – That is priceless! I’m sure many people will go Ewww! at the idea of that but if you suffer from a horrible skin condition, I reckon ‘Doctor fish’ are the least of your worries. I luckily have very little scaling on my body (just sore patches) but I reckon the fish would have a feast on my scalp (Ewww!). Do you think if I got some fish sent over by courier, I could keep them in a bucket for dunking my head into every time the itch gets bad? I wonder what the dermatologist would say 😆
LOL to the bucket – but it might be worth a try! Nothing ventured nothing gained. At the very least a holiday in that place would bring you in touch with other sufferers and you could compare remedies (?) Maybe your dermotologist would be interested in the website? If I come across anything else of interest, I’ll be sure to post it here to you. .!
P.S. After all, leeches are an accepted form of treatment in hospitals these days, for sucking ‘bad’ blood out of wounds. Compared to that, a Doctor Fish nibbling flakey flesh sounds positively pleasant! (Although the idea has put me off sushi – take another look at the URL)!
I noticed the URL 😆 and thanks for your detective work!
Everyone’s comments have made it well worth my while to bare all on my blog 😳
God your brave is all I can say. I hope this gets better for you and I will be ansking some questions on your behalf .
Look who’s talking! I’m not a bit brave compared to you. Psoriasis is not an illness as such but it is a real nuisance and I long to be free of it. The thought of being able to wash my hair and enjoy it again would be magic! I find myself looking at other people’s hair and thinking how much we all take our hair for granted until of course, you have a problem. You’d know all about that!
When I had the surgery on my skull, it felt like the end of the world not being able to wash my hair for weeks on end but that seems so silly now, it’s laughable. Ah, well!
[…] wrote about my own situation shortly after diagnosis when I was literally itching for a solution and I received a great response from readers. It’s now exactly a year since I first started […]
I just want you to know, I have a friend who suffered from psoriasis for several years and nothing really helped…lasers etc. then she tried an anti gluten diet because I had mentioned an anti inflammation diet for arthritis for me. She tried no gluten and it cleared up!
No one is surprised by “hives from strawberries” but what about a more subtle all pervasive substance.
Another friends daughter had alpicia at 17…perfect age! after 4 doctors 3 cities…found out she was allergic to not laurel sulfate…something else I’ll find… it is in everything! she was overloaded…stopped it…her hair grew back.
Try an anti inflammation diet, etc…and or gluten…and see
maryanne – Hello and welcome. Thanks for your response.
I’m a huge believer in eliminating certain food stuffs from the diet to see if it helps. I tried a wheat free diet many years ago in an effort to stop the infections in my head and felt much better for it initially but the effect didn’t last, sadly. I then tried a gluten free diet for about a year and that too helped initially but again didn’t last. The problem is that our tolerance levels are constantly changing so it really is trial and error to see what works best.
Strangely enough, despite not being terribly well at the moment, my psoriasis has almost completely disappeared (both scalp and skin). It just gradually faded away over a period of months in exactly the same way that it gradually appeared. I’ve been warned that it could just as easily re-appear again but right now I’m enjoying the freedom.
I look upon the immune system as something that can easily be overloaded/unbalanced. Doctors can only do so much to keep the balance right. We have an important part to play too.
There is a lot of research currently being done in the field of natural anti-inflammatory foods and whether or not they really affect a person’s overall quality of living. From the results being shown, it seems as though eating anti-inflammatory herbs and foods is a pretty decent way of increasing a person’s overall health and wellness over a long period of time.