I didn't realise how much having psoriasis actually affected me till it started clearing...
This is the problem with psoriasis. What seems to work for one person is not necessarily going to work for others. When they hear of natural remedies, they're always skeptical and want to see for themselves.
In my case, I've been asked to help with DNA mapping as traditional dermatology paths - try-fail-try-fail, etc - are being dropped in favour of mapping treatments that target the correct DNA group. This is apparently more cost effective and better for everyone involved, especially the patient.
Don't look at this as looking back on the negatives - if anything, you are providing useful information on what worked for you so far. If there is a chance this might work for someone else, then it's something worth looking into. It just happens to be a bit horrible for you to have to recall everything but you'll be fine...hopefully he won't have you unpicking any of the stuff you've done to make things worse!
It's always the way...sometimes we'll go through Hell to avoid having to do the easiest route because we're aware of the side effects that taking medicine could have. Even with my wonder injection, I'm having to put up with the side effect of feeling like I have a cold all the time. I don't, but take additional Vit-C and take the occasional cold tablet if I feel like it's trying to come on. My skin, however, is virtually back to being smooth. No new outbreaks, just the leopard spots on the legs but I can live with that!
tbh. I've tried a lot of different approaches and whilst I didn't think it affected me that much mentally, it must have done as my confidence has increased so much since I started on my course. It took me a very long time to come round to even agreeing to take drugs of any sort in order to try to combat this condition because I'm very aware of the damage that could be done in addition to the positive element.
@Rosey, I'm very glad to hear that you are making big improvements with your condition...it's onwards and upwards from here!
@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...
Right now, I’ve had the first 3 dosages funded so my specialist will need to apply for further funding which shouldn’t be a problem given the positive results I’ve shown so far.
It is administered as follows:
Dose 1: week 0
Dose 2: week 4
Dose 3 will be week 12 (8 weeks after the second dose). Now I’ve been told two different things. The official site says all subsequent doses are 8 weeks apart where the administering nurse said 12 weeks, so there will be a quick call to make sure today!
@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...!
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.
@Michelle - most systemic treatment for psoriasis (tablet or injection) work by reducing the immune system as it is known that the condition is caused by an overactive immune system. The lower tier stuff, especially the one beginning with M, are cross-platform drugs which mean they are also used for treating cancer or can potentially cause damage to organs like the liver. This is why they take so many regular bloods from you - to monitor and confirm that there are no long term effects from taking these drugs. These lower tier drugs are not for everyone and their effectiveness will depend on the severity of the condition and what state the immune system is in.
When you move into bio-land, these drugs are known to clear psoriasis to a higher extent, in some cases completely clearing it. There are a couple of drugs used for this - an established one has a longer period to run in whereas the newer one requires fewer doses and 'guarantees' a higher percentage of clear skin.
As far as I know, it doesn't shut off the immune system, but reduces the effectiveness of your immune system. You do have to take more care when dealing with people who have colds, coughs and flu so you are legible, in the UK at least, to receive free flu and chest infection jabs as a consequence of this.
It's perhaps something that could be discussed in a thread where we can name the various drugs....is that going to be allowed? Rather than highjacking psomom's deserved joy at something that is working for her son...
@Peter, due to the cost of these injections, if you're doing it on the NHS (in the UK), you need to have 'failed' 2 or 3 treatments prior to your specialist being able to apply for funding. If you're on private health insurance, then I'd guess you'd need to speak to a consultant to determine the best way forward for you.
For me, I had been through UVB light treatment, on/off usage of creams with steroids in them and finally two different types of tablets (one dosage being an injectable).
At this point, my specialist put forward his application for funding - initially only for 3 doses! - and I am now on a new (to UK) drug for which I'm also having to participate in trial-like information gathering as I've been told that the way for matching patients to the correct type of treatment is now changing.
It is an absolute godsend. Admittedly there is a downside with a suppressed immune system, but I'm willing to go through a period of this if I'm able to achieve clear skin.
Unfortunately, I believe the forum rules prevent us from naming the drug directly, but I guess I can answer your question in a private message. This drug, however, is openly advertised on TV in the States which is where I became aware of it.
Second dose administered today under supervision by the nurse. When I showed her how much it had improved after just the one dose, she furiously scribbled (well, tappety tapped onto her iPad) some deets...she was pretty impressed with the improvement...It's still a long way off, but Psoriasis - I am getting to the point where I will be able to laugh in your face...for a while at least! :D