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.
Posted Fri 28 Jun 2019 12.14pm by bransoj
After an appointment today at the hospital it looks like i'm being moved to Tremfya so interested to read peoples reviews of these Biologic treatments. I'm in my 40s and had Psoriasis since i was a young child. Over the years i've tried all the creams and ointments going and in the last few years tried various tablets as well. The only things i've had success with has been light treatment and enstilar foam. Both are great for getting it under control or clearing it up but neither keep it away on a regular basis without continual use. I've most recently been on MTX and worked my way up the doses and whilst i've had no issues using it its just made next to no difference to my Psoriasis hence the decision to change my treatment again. The lady i saw was hopeful i'll see good results and reading about it seems people have good results with these treatments so if thats the case then i'm fine with having to do an injection once every 8 weeks once its up and running!!
Posted Sat 29 Jun 2019 1.20am by scouternorm
My wife has been on Tremfya since Oct 2018, and gets an injection every 8 wks. Her scalp psoriasis has disappeared. She has heavy plaque on her feet, which is getting better, but she still is using Dovobet to thin it. Her fingernails were bad & are getting better. I don't knowif she considers it a cure-all, but it does help
Posted Mon 9 Mar 2020 11.47pm by HIGGYSTEWART
Eventually received my biologic. I have been prescribed illumetri tildrakizumab. Think this is a pretty new biologic.
Posted Tue 10 Mar 2020 7.30am by Jenora
Oh ... I’m so confused.
I’ve been through the various stages of treatment over 30yrs.
The only drug that actually worked wonders. Was methotrexate... but severe hair loss and chronic fatigue....so was taken off.
Otezla. Simply awful. 2 years of drug induced life altering at time migraines ...
The drug then failed. Thankfully. Sadly.
Humira. On it 3 months. Kinda worked in such a short time. But. Horrendous side affects for me. Liver problems. Upper abdomen infection acid. 6 months to feel better. Liver still playing up !!👎
It works differently for everybody ....
So. My question is.
Ciclosporin ??? That’s supposed to be next for me.
What do I need to know ... honestly. ???
Thankyou. In advance
Posted Tue 10 Mar 2020 9.13pm by DodgeWC51
Methtraxate, I was on it following Cyclosporin, but despite being teetotal since 15 (The first time I got drunk, 3/4 bottle of White Horse Whisky, never ever agin!) I devloped NAFLD, o the joy of all the intials! Non Alcaholic Fatty Liver Disease. So of fthe Max. Cyclosporin, the good news, one of the side effects hair growth! A while back there was a short burst of fuzzy news that it was 'A cure for baldness!' I still haven't stopped laughing at that. Dosage is twice daily , may or may not start with decease of Methtraxte and upping of Cyclosporin. Main side effects , tingling fingers and sore throat,. I used TCP gargle for the sore throat, a packet of Dexadine thraot lozenges is also useful to have near by. Intially I was on weekly blood tests, dropping back to three monthly. You do need to be relativly precise on when you take the tablets, 12 hours apart. Intially took about six weeks to start to work,good clearnce after twelve to fifteen weeks. Funnily enough I've gone on the Humira, and that's working fantastically. There are new biologics coming on line so hopefully one of those will take over.
Posted Wed 22 Apr 2020 11.31am by StevieT
Small input but I had P from roughly 20 years old till now ,I had it really bad with a 75% score on the old system ,I was put forward for a trial at Salford Hope hospital approx 10-12 years ago and the trial was for etanercept ,the difference was amazing and literally overnight it started going away ,it more masked the P as you were always aware where the P had been ,in particular in the sun the areas did not tan the same ,anyway from a personal point of view I would go on the Biologics ,everybody is different and in fairness if you read the patient notes for paracetamol you wouldn't take them
In regards quality of life the biologics have made a major difference ,from 1988 when my son was born I couldn't comfortably take him swimming and the like because of the looks I would get ,by the time my daughter was born and she got to swimming age then I was on biologics and my look totally changed and I was able to live life ,pity the time with my son in his younger years was spoilt with the P issue
Would recommend the biologics if you get the chance to go on them it did change my life ,whether it shortens my life will remain to be seen ,looks like other things may get me before the after affect of a biologic drug
All the best whichever way you go ,by the way I have now moved onto secukinumab
Posted Wed 22 Apr 2020 1.45pm by DodgeWC51
I'd agree with StevieT , to quote Paraselis, The dirrence bettween a drug and a poision is a dose. I've had Cyclosporin, stopped the Erythroderma, which could have killed me, but also had nasty side effects, then Methotraxate, did the job , and the liver in. Now on Adulimumab, Humira, for 8 months. Does everything it should do, life has never been as good, and I've had P since childhood. So if like me , you were intially worried about Biologics, don't be.
Even under lockdown conditions, life is as normal as it can be. The support you recive is first class from Hospital Consultants and Health care at Home. The joy of wearing t shirst in summer , being able to swim in public, and not having people flinch when you go to shake hands, your sleeve rolls up and the see the scabs. So for anyone checking this site and wondering. Definitly go for it.
Posted Mon 18 May 2020 6.37pm by Yiannis
Hi ,been in Methotrexate for 2 years ,worked for 1,5 year ,stopped working effectively at around month 19 ,got worse towards month 24 , then i continued almost two years on Otezla which again worked for less than 16 months , symptoms got back after month 17, tried to keep taking it as is easy without sideeffects , but gradually within 5-6 months stopped working ,now my doctor is putting me on Cosentyx ...anyone familiar with this series of treatments ??
Posted Tue 19 May 2020 8.22am by StevieT
I think I put above that I was on secukinumab but it seems to be known as cosentyx to others ,all I can say is stick with it ,I had been on another injection drug etanercept for years ,it had worked well but had started losing its effect although was keeping the P under control compared to many years ago
The cosentyx at first didn’t do a lot for me in fact it caused me to have a flare up mainly on calves and forearm areas ,little blister type spots which itches like mad ,if this happens to you then don’t do as I did and scratch them till red raw ,try to dull the itching without breaking the skin ,reason for this is that the cosentyx after the initial flare caused the P to go away except for leaving me with scarring where I had scratched away the skin,the marks are fading now but should and could have been avoided, as regards using I have 2 self injections per month in my tummy ,totally painless and my skin is generally clear
Hope it makes a difference ,I keep seeing methotrexate being mentioned and although it helped me the sheer thought of using it fills me with dread literally down to the nausea and fatigue it caused me
All the best Steve
Posted Wed 20 May 2020 10.06am by Yiannis
a miilion thx Stevie , this is really very helpfull ,