Sid
...feeling hopeful Sid @sid

Coping, treatment, healthcare system

So, I wanted to put down my experiences with various medications, creams and tablets etc over the past few years. This will be below in the comments as I can't post loads in the initial post! haha

15

Please don't include specific medical product brand names or external links.

15 responses

Michelle
Michelle @michelle1021

Tell us more Sid. What else have you tried and what worked for you? :)


Sid
Sid @sid

So over the past 10 years or so that I've had psoriasis, I have tried UVB light treatment, a topical steroid ointment, the same in a cream format, a combination of UVB and steroid cream. Then I had a period where I discovered some stuff from the States which was also available here in the UK but was not effective other than a 5 minute relief, goat's milk soap cleanser, almond milk soap cleanser, stuff from Holland and Barrett...Then more recently as I discovered the light treatment wasn't enough, having got up to 15 minutes in the 'microwave' as I called it and it was no longer helping, I also discovered John's 'magical cream' which was the first thing to truly combat the condition but, like most people, I didn't know it had a bucketload of steroids in it!
After a change of consultant, we decided to go the tablet route which also included a course of epi-pen injectables. Once this proved to be partially effective, it was also deemed to be too slow, so I was switched to another tablet which also did the same thing.
During this time I was also using a cream made by Garnier which contained 5% Urea in it and this was helpful in providing a longer lasting moisturisation without feeling tacky.
So, having 'failed' at light treatment, two courses of tablets and changed my diet a bit - I've managed to lose around 7kg in weight since the beginning of November to now without a massive reduction in anything other than sugar and salt - my consultant decided it would be time to move to biologics. As he appears to be a champion of this particular drug in the UK, he felt this would do the job properly and set off after funding due to the cost. He managed to secure funding for the first 3 doses and here we are...week 4 with virtually 90% clearance and the first time I've been happy showing off my arms to anyone outside the immediate family in over 2 years.

So the steroid creams/ointments - sparingly used, these can help a little. The biggest downside is that it can absolutely get EVERYWHERE...it never truly absorbs into the skin, so you have this greasy feel for a few hours at least. They help with the skin production for a short term, so small patches of skin can be treated but you can only use them for short periods of time. The 'magic cream' also falls into this, but this cream - if it's the same one I think it is, apparently contains more than 4 times the acceptable level of steroids, so extreme care should be employed with this.

UVB light treatment was the first treatment I had...it should have been the last but there were two occasions where I didn't finish the course and by the time I was allowed back on, my skin was back to where it was before I started. The positive side was that I had a perma-tan which was way better than a certain US president's but 3 times a week in a box full of light tubes which makes a noise like a microwave, you can't help thinking you are cooking yourself...!

The first kind of tablets you get given also double as cancer treatments, so they begin to monitor your bloods for any signs of issues with your kidneys, liver and white cell count as they have to pull you off if it starts going south. During the first set of tablets, that we'll call M (and is a cancer treatment drug), I was also given them in liquid form in a n epi-pen...it's strange having to stab yourself in the leg on a weekly basis but it worked for a little while. I was then moved off to a softer drug which worked for a while - long enough for them to finally assess me for biologics.
Now, as I've stated in several posts now, biologics is the absolute holy land. I'm currently one of the first group of people using this particular drug as it has been well received in America and has just been made available over here in the UK. It comes in another stabby pen form but a bit bigger as it contains 100mg of the stuff...If the blurb on the website is to be believed, they administer just 8 doses - the first 2 a month apart, the third dose is 8 weeks later then it's 5 doses 12 weeks apart.
Biologics will do the job but you have to be aware of the following: it will reduce your immune system, so be aware of catching colds, flu and coughs. In the UK, you will be legible for free flu and chest infection jabs. You should also avoid taking the drug if you're ill or on antibiotics and schedule any dentistry after you've had the injection too. This will be when your immune system will, presumably, be at its lowest and more open to infection. Depending on the state of the psoriasis at the time, you can begin to see an effect within 10 days of the first injection. It is not guaranteed, but it can happen. For me it happened within the first week, but I can only guess my condition is not as severe as many of you.
Whilst I cannot say it will work for everyone, the website does state it will work for most people and that after 16 weeks, there is a 90% clear skin rate and people will stay clearer for longer.
I also changed my diet a bit and reduced sugar intake as much as possible, reduced portion sizes and generally tried to become a little more healthier. This has allowed me to, with little extra effort, lose around 7kgs in the past 3 months despite a heavy chest infection between Nov-Dec!
If anyone wants to know what bio drug I'm on, please send me a PM and I'll be happy to share.


 john,Flakes to beam up
john,Flakes to beam up @chewbacca

Geeeeze Sid, Thats a long post, Thank you , :)


Sid
Sid @sid

I did say there wasn't enough in the first post to type a lot...! haha!


 john,Flakes to beam up
john,Flakes to beam up @chewbacca

Hhaha,Well, I am glad things are going well for you Sid, We all try anything to get rid of this and i get it, We know there are risks with most of the medications out there, :)


psomom
psomom @psomom

Great to hear Sid. I hope you continue to have excellent results!


Michelle
Michelle @michelle1021

Very interesting Sid. You really went through a lot of treatments. I'm glad this one is working for you. I'm a big fan of my immune system so I won't try this bio but thank you for mentioning it to us. I wish you all the luck and I do hope you stay clear for a very long time. Please keep us updated okay? :)


Deb
Deb @deb79

M has been working for me as well but the Blood work is Exhausting and apparently affecting my Liver. I've been off since Oct but P is returning so will try again which means I'll probably lose my Hair again.


Sid
Sid @sid

@Deb, this is when they needed to shift you to a different type of drug as M is obviously hurting you despite doing good. I hope they realise this as regaining your skin isn't worth also losing your hair!


James
James @ferns

Interesting you talk about tan, I'm up to 4.5 minutes twice a week and I still look like a pint of sterilised milk. They told me the cabinets only use a narrow part of the UVb spectrum so I wouldn't get tanned. So far this has been the case. My P is fading though, more so higher up my body, but it is all fading. I asked about this and they said it was normal for your top half to fade quicker. The only problem I've had so far was cracked and bleeding lips. I moisturise all over but never thought about my lips. Some Burts Bees sorted that though.


Sid
Sid @sid

@James, they did say a tan might occur depending on your skin type. Being of a Far East type, I have the ability to tan in almost any half decent sun, so being at the max settings for the ‘microwave’ and for the max time (around 15 minutes) meant I potentially spent up to 45 minutes a week under the light and it is possible to tan out from that...from that I consider myself extremely lucky...!


James
James @ferns

Yes, my ex is Italian so my daughters just need to flick through a holiday brochure to start going brown. I on the other hand, am Scottish through and through. We start melting if it gets more than 10 degrees above freezing.


Michelle
Michelle @michelle1021

lol James. That is so funny. You start melting when it gets more than 10 degrees. We start freezing when it gets to 18 degrees. Yes, us South Africans can be pissy's when it comes to the cold.


RIAZ
RIAZ @mrashruf

M is good, but cannot be sustained and once you get off it, it gets 100 times worse. SID, can I ask which biologic you on? I am on my 3rd type and don't know if its going to work.


Sid
Sid @sid

@Riaz - I'm not sure we're meant to be naming medical products here, so ping me a DM and I'll let you know offline. I've just had my second injection and am already close to all-clear. My third injection will be in about 8 weeks time. I do know it's a fairly new drug to the UK market and believe I'm one of the first to try it, having been placed in a trial...



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Sid
Sid @sid

I didn't realise how much having psoriasis actually affected me till it started clearing...





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