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Newbie with an oldie disease

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Newbie with an oldie disease
Spotless Offline
Member


Posts: 36
Threads: 2
Joined: Jul 2017
Gender: Female
Location: London
Treatment: Stelara
#1
Thu-20-07-2017, 09:35 AM
Hi,
I thought I'll join the club been lurking here for a few days. I start Stelara today and very nervous about yet another biologic that may not work for me. Been on Enbrel and Humira.
I've had psoriasis for as long as I can remember and I've been on everything that's possible to treat psoriasis. Unfortunately after Humira stopped working I have developed arthritis (god hates me) and this is another ball game. When you can't walk that's just a different story.
So here all flared up waiting for the nurse to come inject me. It's taken 3 weeks to process through the NHS here in London I don't know if that's normal but it has been terrible waiting to start.
So here I am and so happy to read really good success stories about Stelara.

Cheers!
A girl who really really wants to be Spotless!
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#2
Thu-20-07-2017, 09:50 AM
Hi Spotless and  Welcome to the club you will find us a very friendly group of fellow sufferers. And this site gives us a platform to share our experiences and support each other through the good and bad times with the disease, there is so much information here, about the disease and its treatment. If you need any help navigating around the site or a question just shout out and someone will reply

This  is a great place to meet and chat with fellow sufferers, knowing that the site is secure and you won't be bombarded with advertising, or encounter any spam, or ever be asked to donate.....we are proactive in ensuring that we all have a safe place to meet and exchange views

I'm sure you will find Stelara a good treatment and it will hopefully ease the psoriatic arthritis.... as you said there are numerous examples on here about how successful  Stelara is at managing the disease.
I'm sure god loves you, but is just making sure you are paying attention  Big Grin
Im looking forward to reading your experience of Stelara and hope you get your wish to be spotless  Thumb


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Spotless Offline Author
Member


Posts: 36
Threads: 2
Joined: Jul 2017
Gender: Female
Location: London
Treatment: Stelara
#3
Thu-20-07-2017, 10:13 AM
Thanks for the warm welcome.
Let's see how I go with Stelara, would love to hear more stories about others who is using this biological and how long they have been on it.
Enbrel lasted 2 years for me. Humira 3 years. So I'm a little sceptical of yet another biologic that will start to work and fail. This flare has been dreadful it's the worst I've been in a long time. So I'm a little scared of having to go through this every time a drug stops working... it's a vicious cycle.
You have your highs and then you have your worst lows...
jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#4
Thu-20-07-2017, 10:59 AM (This post was last modified: Thu-20-07-2017, 20:58 PM by jiml. Edited 1 time in total.)
(Thu-20-07-2017, 10:13 AM)Spotless Wrote: Thanks for the warm welcome.
Let's see how I go with Stelara, would love to hear more stories about others who is using this biological and how long they have been on it.
Enbrel lasted 2 years for me. Humira 3 years. So I'm a little sceptical of yet another biologic that will start to work and fail. This flare has been dreadful it's the worst I've been in a long time. So I'm a little scared of having to go through this every time a drug stops working... it's a vicious cycle.
You have your highs and then you have your worst lows...
I know fred was on it for 6 years before it started to fail and he moved to Cosentyx ....he has a rather long thread about it here Stelara round two
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,181
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#5
Thu-20-07-2017, 11:29 AM
Hi Spotless! Nice to meet you Wave

I started on Stelara early this year after trying Humira.

I cleared within about a week, and still clear at the mo. It's been amazing.

Sadly I've had a flare of psa symptoms which I attribute to going on Stelara but the derm and rheumy I've just seen say it's not the drug at fault.

I think most people don't experience this so don't worry about it, and I hope it clears your skin too Smile
Spotless Offline Author
Member


Posts: 36
Threads: 2
Joined: Jul 2017
Gender: Female
Location: London
Treatment: Stelara
#6
Thu-20-07-2017, 16:27 PM
(Thu-20-07-2017, 11:29 AM)Turnedlight Wrote: Hi Spotless! Nice to meet you  Wave

I started on Stelara early this year after trying Humira.

I cleared within about a week, and still clear at the mo. It's been amazing.

Sadly I've had a flare of psa symptoms which I attribute to going on Stelara but the derm and rheumy I've just seen say it's not the drug at fault.

I think most people don't experience this so don't worry about it, and I hope it clears your skin too  Smile

Hi Turnedlight,
Thanks for sharing your experience with me. Did you have any side effects using Stelara?
So your PSA started when you started using Stelara? Mine stated towards the end of using Humira. It was very painful when I was completely off Humira waiting for Stelara to start. I taking Naproxen which has helped with the pain and can walk now but my right foot is swollen and I have a sausage finger which doesn't bend. It's just awful having one disease and then having another one now too. Totally unfair!
Spotless Offline Author
Member


Posts: 36
Threads: 2
Joined: Jul 2017
Gender: Female
Location: London
Treatment: Stelara
#7
Thu-20-07-2017, 16:29 PM
(Thu-20-07-2017, 10:59 AM)jiml Wrote:
(Thu-20-07-2017, 10:13 AM)Spotless Wrote: Thanks for the warm welcome.
Let's see how I go with Stelara, would love to hear more stories about others who is using this biological and how long they have been on it.
Enbrel lasted 2 years for me. Humira 3 years. So I'm a little sceptical of yet another biologic that will start to work and fail. This flare has been dreadful it's the worst I've been in a long time. So I'm a little scared of having to go through this every time a drug stops working... it's a vicious cycle.
You have your highs and then you have your worst lows...
I know fred was on it for 6 years before it started to fail and he moved to Stelara ....he has a rather long thread about it here Stelara round two
Thanks Jim, I read all about Fred's experience I do hope I can stay on Stelara just as long without side effects and living a normal life again. I've been bed bound for the last month... ?
Grizzly Bear Offline
I’m a born again lesbian & proud of it !

100 + Member I Just Cant Stop !
Posts: 10,064
Threads: 108
Joined: Dec 2014
Gender: Male
Location: Exmoor
Psoriasis Score: E = mc²
Psoriatic Arthritis Score: A = mc²
PQOLS: 69
Treatment: Carbolic Acid & Neat Bleach
#8
Thu-20-07-2017, 16:33 PM
Welcome Spotless Wave

I was on enbrel, humira and now I'm on stelara.

Hope it works for you Thumb
Turnedlight Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 6,181
Threads: 62
Joined: Apr 2015
Gender: Female
Location: Uk
Treatment: Skyrizi
#9
Thu-20-07-2017, 17:12 PM
(Thu-20-07-2017, 16:27 PM)Spotless Wrote:
(Thu-20-07-2017, 11:29 AM)Turnedlight Wrote: Hi Spotless! Nice to meet you  Wave

I started on Stelara early this year after trying Humira.

I cleared within about a week, and still clear at the mo. It's been amazing.

Sadly I've had a flare of psa symptoms which I attribute to going on Stelara but the derm and rheumy I've just seen say it's not the drug at fault.

I think most people don't experience this so don't worry about it, and I hope it clears your skin too  Smile

Hi Turnedlight,
Thanks for sharing your experience with me. Did you have any side effects using Stelara?
So your PSA started when you started using Stelara? Mine stated towards the end of using Humira. It was very painful when I was completely off Humira waiting for Stelara to start. I taking Naproxen which has helped with the pain and can walk now but my right foot is swollen and I have a sausage finger which doesn't bend. It's just awful having one disease and then having another one now too. Totally unfair!

I haven't had any other side effects, though maybe I'm a bit more lethargic than I am when not on any treatment - but it's hard to say while you're in treatment!

I did have some aspects of psa before - I have had a carpal tunnel op., also had plantar fasciitis and Achilles tendinitis. But I had not had any lower back pain before, and this particularly affects my derrière so it's painful to sit very long, or at all on hard surfaces! I'm told this is tendon related also. But as I say, my docs refuse to ask the drug manufacturers if it's related, citing the fact they actually use Stelara against psa. I'm on meloxicam for it which helps but I'd rather know for sure if it's the Stelara. Could I suppose be a complete coincidence..
D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,290
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#10
Thu-20-07-2017, 17:48 PM
Hi Spotless. welcome to the forum and to the friendly site with people who know what it is to have the damn thing.
I am on Stelara and have been for around 5 years now , we are all different and each drug works differently for each individual as are the side effects . It works fantastic for me and has been a life saver , with me the clear up of the P started just after the second injection at 4 weeks then it cleared really quickly and apart from a few patches in my ears I have been clear up until recently and I have a few patches now but I am under a lot of stress at the moment . I must admit that the MTX was better for my PsA than the Stelara but I just manage with Tramadol now ,used Naproxen but it caused me stomach ulcers so I had to stop it. I also use Enstilar which is quite good .
I self inject my Stelara which is much better as you are not waiting for a third party to decide when they can get around to do it for you.
Best of luck and I hope that it works well for you.
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