Posted Tue 28 May 2019 11.41am by HIGGYSTEWART
I am 39 years of age, had severe psoriasis since I was 20. Tried every ointment, cream and now have annual light treatment. Tried Methotrexate had to come off it as messed up my liver. Tried Otezla and it never worked, started to loose my hair so came off that too. I have just put it up with the psoriasis. Trying to keep it under control using Enstilar but as soon as I stop Enstilar it has flared up to the extent I am red raw from my chest to my bottom front and back. My legs and arms are covered in spots all over too. I tried to get appointment at my Dermatologist but the waiting list is 6 months and I can wait as I'm in agony. I have ended up paying private to see the same Dermatologist that I normally see at an NHS hospital. So she is going to refer me to the severe psoriasis clinic but there is an 8 week waiting list!!! In the meantime I have been looking up and reading about the injections. As it looks like that is my next option. Just wanting to hear people's thoughts and experiences.
Posted Fri 31 May 2019 7.51pm by Loops
Hi, I started biologics (Stelara) last September and I cannot describe how it has changed my life - for the better. My Psoriasis has nearly cleared, I have some areas on my shins which are being a bit persistent. They are nothing like they used to be, to the point that I am actually considering wearing shorts on holiday! They are only slightly pink with minor flaking.
Biologics has worked for me, but we are all different.
I also had to come off Methotrexate because it was messing up my liver. As an aside, my LFTs aren't far off normal now (which they have never been) since I started the injections, but that could be anecdotal?
Posted Tue 11 Jun 2019 6.58pm by DodgeWC51
Hi, haven't been around for a while, but same as you Loops. The Methotraxate has worked, but, my dermitologist has started the tests for Adalimumab. Frankly reading the patient info is bloody scary! So what is it like on Bios? As my psorasis decide to throw Erythroderma into the mix, I'm now going to be on something for the rest of my days.
Posted Tue 11 Jun 2019 7.55pm by EQ
So, I was diagnosed with psoriasis at age 13 and have suffered for years severely. I’m now 23 and have spent years pushing for a treatment that works. Much like you, Methotrexate was a god send but it was messing around with my liver and starting to cause damage so was taken off.
I have since started Humira injections that have really changed my life - for the better. As a 23 year old girl the patient info was really on my mind and scared me however for me, being able to live my life again ruled that out. I’ve now been injecting for the last year and honestly, I would never look back. My quality of life is amazing, completely normal and not suffering or having people constantly look at me like I’m an alien or making comments.
If you are suffering enough that it’s effecting your life, ignore the patient info and take the plunge because you won’t regret it if you have the same outcome.
Posted Wed 12 Jun 2019 4.12am by DodgeWC51
Thanks EQ. Nice to talk to people who know the real problems. I've had it all my life, my Mother had it so it never worried me , I knew what it was then after 59 years , suddleny went off the chart. So far it's been a year on Cyclosporin, followed by a year on Methotraxate, now Biologicals. The reallly annoying thing! Now I could drink alcahol, which I've never done, but avoid blue chesse! Which I love! Always some drawback. :-)
Posted Sat 15 Jun 2019 6.10pm by Loops
I have just got back from holiday and did feel confident enough to wear shorts!! Biologics have changed my life. Quality of Life is so important and for me outweighed the potential downsides (of which I have found none).
As for the Patient Information, I haven't suffered any of the listed side affects and bear in mind that when you read the information leaflet for most drugs, the final one is nearly always death!! They are generally covering back statements, no doubt during the trials some people did suffer some of the affects, but you don't know if it will be you unless you try them. I was prepared to take the gamble and it has paid off.
I feel so much better than I did when I was on MTX, the nausea feelings have gone and I feel as if the fog has lifted.
The Stelara injections are every 12 weeks and I self inject. It doesn't hurt and was much easier than I had anticipated! No more weekly tablets.
This is my experience, but the decision has to be your own and you have to go with what feels right for you.
Posted Sat 15 Jun 2019 7.24pm by DodgeWC51
I had a number of unpleasant side effects on Ciclosporin, none on Mathotraxate. My major concern is that I work directly in a very saftey crtical position. I can't afford any side effects.
Biologicals are so new that so far there is not the basic data known,. As far as control , the Methotraxate works for me.
Posted Sat 22 Jun 2019 7.12am by poodytat
Ive had psoriasis for over 30 years.
Hi. Had Ps for over 30 yrs. Tried everything and now on Humira but switched to the newer cheaper Amgevita. This has changed my life. I barely feel like I have Ps any more. You have to weigh up side effects v quality of life and see what is right for you. I always get regular bloods and stuff to keep an eye on things. Good luck with whatever you decide.