Just a quick update for future reference.

Stomach seems to be settling down.

Psoriatic arthritis score gone down from 4 to 2

Still not sure if it was related to the Cosentyx, but it looks like I'm coming out of the woods.

Good it's settling down Fred , and your score is going down again

Hopefully it wasn't related to the Cosentyx ....Time will tell I guess

(Wed-30-11-2016, 21:02 PM)jiml Wrote: Good it's settling down Fred , and your score is going down again

Hopefully it wasn't related to the Cosentyx ....Time will tell I guess

Yes I'm hoping it wasn't Cosentyx related and I still think if it was going to cause problems it would have done so by now, but always best to keep a note.

But on a positive note, the psoriatic arthritis is getting better again. I'm currently up to 3km walking three times a week at minimum and sometimes more which is nice to be able to do again, and although not shedding weight I'm down to 91 Kg the lowest I have been for a few years. I had gone up to 105 at times, and my best was 85, so still a way to go but Cosentyx is helping me get it down.

(*I should point out I gave up with the BMI as it's a rubbish way of scoring peoples weight, and I would say 85 would be where I would like to be again as it was when I felt at my best)

(Wed-30-11-2016, 21:14 PM)Fred Wrote:

(Wed-30-11-2016, 21:02 PM)jiml Wrote: Good it's settling down Fred , and your score is going down again

Hopefully it wasn't related to the Cosentyx ....Time will tell I guess

Yes I'm hoping it wasn't Cosentyx related and I still think if it was going to cause problems it would have done so by now, but always best to keep a note.

But on a positive note, the psoriatic arthritis is getting better again. I'm currently up to 3km walking three times a week at minimum and sometimes more which is nice to be able to do again, and although not shedding weight I'm down to 91 Kg the lowest I have been for a few years. I had gone up to 105 at times, and my best was 85, so still a way to go but Cosentyx is helping me get it down.

(*I should point out I gave up with the BMI as it's a rubbish way of scoring peoples weight, and I would say 85 would be where I would like to be again as it was when I felt at my best)

Oh... you're doing sports again three times a week!! That is admirable

You BMI is no problem of course, if at least you are tall enough. My brother also weighs 91, but has an excellent BMI, cause he is 1m92 tall.
You are in trouble if you are a midget.

(Wed-30-11-2016, 21:47 PM)Caroline Wrote: Oh... you're doing sports again three times a week!! That is admirable  

You BMI is no problem of course, if at least you are tall enough. My brother also weighs 91, but has an excellent BMI, cause he is 1m92 tall.
You are in trouble if you are a midget.  

I wouldn't say sports, it's more like a brisk walk.

No BMI is a stupid idea, I'm only 1.7 but I have a very stocky build. The BMI says I should be around 53 -72 for my age, that is utter rubbish. I haven't been anywhere near that since I was about 20 years of age, and I have no plans on going that low.

The BMI can't take into account of a persons build. My neck is just over 43cm and has been for years. I also have very broad shoulders, so to be 72Kg or less I would fall over.

(Wed-30-11-2016, 22:04 PM)Fred Wrote:

(Wed-30-11-2016, 21:47 PM)Caroline Wrote: Oh... you're doing sports again three times a week!! That is admirable  

You BMI is no problem of course, if at least you are tall enough. My brother also weighs 91, but has an excellent BMI, cause he is 1m92 tall.
You are in trouble if you are a midget.  

I wouldn't say sports, it's more like a brisk walk.

No BMI is a stupid idea, I'm only 1.7 but I have a very stocky build. The BMI says I should be around 53 -72 for my age, that is utter rubbish. I haven't been anywhere near that since I was about 20 years of age, and I have no plans on going that low.

The BMI can't take into account of a persons build. My neck is just over 43cm and has been for years. I also have very broad shoulders, so to be 72Kg or less I would fall over.

Hihi, Yes you would I think. But I agree that the type of body you have cannot be included in that calculation.
Though, my brother also, he is slim and tall, should not become lighter or he would also fall over. His girlfriend must have about the same BMI, but she is even more tiny than you are, but she is very light. Quite a contrast those two.

(Wed-30-11-2016, 22:14 PM)Caroline Wrote: Hihi, Yes you would I think. But I agree that the type of body you have cannot be included in that calculation.
Though, my brother also, he is slim and tall, should not become lighter or he would also fall over. His girlfriend must have about the same BMI, but she is even more tiny than you are, but she is very light. Quite a contrast those two.

Another way of looking at it would be. I would make a rubbish Marathon Runner, but a good Rugby player.

So the BMI is a pointless exercise.

Just had my week 12 shot and thought I would give an update on how things are going.

First off I have to say WOW I thought Stelara was good but cosentyx beats it hands down, I hadn't realised how bad things had got with the psoriatic arthritis and it feels like I'm getting another new life again.  

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Ok let's start with the psoriasis: (excuse the photo's they're not great)

After what I had read about Cosentyx I have to say I'm not as impressed as I thought I would be about the psoriasis. I thought going by what I had read that it would now all be gone, but it's no big deal for me as I'm more interested in what it does for psoriatic arthritis.

Don't get me wrong I'm pleased with it as there are no flakes, but you can still see where it is and I'm sure I've had better with Stelara in the past. But it's still early days and looking at it it is going in the right direction, but it's just that I have heard people say they were clear in a few weeks.

Anyway you can see the difference:

Week 1 Shin


Week 12 Shin


Week 1 Torso under arm


Week 12 Torso under arm

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Now to the most important part for me about this treatment as I went onto it to try and help the psoriatic arthritis.  

   


I was first diagnosed with psoriatic arthritis about 30 years ago and I honestly can't remember the last time I felt this good with it. Some of you may know that about ten years ago it struck me down with a vengeance and I was unable to dress myself or even lift a cup of coffee with two hands and my life had become hell. It was then that I first went onto the bio's (Remicade) and I started getting my life back, after a few fails I moved onto Stelara which I had been on this past 6 years and although it was never great for psoriatic arthritis it did help me carry on a reasonable life.

However the winters and damp days were getting worse as the years went on and I hadn't realised how bad it was as it crept up on me slowly. I started getting problems with movement and walking again and it looked like it was going to get worse as time went on, so that is why I went onto Cosentyx as soon as it was available.

Hang on I need another WOW! sorry if I'm boring you but I feel so good about this.

Now I have found like Stelara the benefit does seem to go up and down over the times scale between shots. But unlike Stelara, Cosentyx is over a 4 week period as opposed to 12 weeks. So what's my 4 weeks like on Cosentyx?

Well at the worst I'm around a score of three, and at the best I have reached a score of ZERO (Yes zero). The best time is around week 2 and 3 and I hardly have any pain even if it's damp, then week 1 and 4 is when I notice it more with 4 probably being the worse. So I'm week 4 today and it's damp and I have a score of 2, this has been my worse this month and I have been at 1 - 0 for most of the time.

*I use the PsAscore to keep track of things.

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Side effects:

Now this is where things could get interesting. I had a bought of diarrhoea the day after my last shot and it lasted a couple of days. I hadn't had it with the other starting shots and don't know if it is the Cosentyx or not, but it is one of the side effects. So I'm just going to have to see how things go tomorrow.

Should it be an ongoing thing I will have to weigh up the benefits against the inconvenience. At the moment I would put up a with a couple of days of diarrhoea per month to have two weeks pain free and only very mild psoriatic arthritis for the other days.

Apart from that no other side effects to report.

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So to sum up:

After 12 weeks of Cosentyx I'm amazed and even if it just gets me through this winter feeling the way I do I will be very grateful.

If you have bad psoriatic arthritis and your treatment isn't working as good as it once was, go and push your dermatologist for Cosentyx.


*Sorry for the long post, but I'm so happy.

Don't apologise for the long post, as everything you have told us is relevant and exciting to read....I agree some have cleared their psoriasis very quickly on it, perhaps they don't have the arthritis that you have, so the drug has less to do with them

I'm impressed with the pictures Fred and I could live with that....but to me it shows it's shifting and hopefully will get you clear .....looking at the shots of your shin there is a vast improvement  

I look forward to your updates as they do give others hope. .....I'm pleased it has made such a difference to your life, let's hope it continues to improve for you

(Sat-24-12-2016, 13:30 PM)jiml Wrote: Don't apologise for the long post, as everything you have told us is relevant and exciting to read....I agree some have cleared their psoriasis very quickly on it, perhaps they don't have the arthritis that you have, so the drug has less to do with them

I'm impressed with the pictures Fred and I could live with that....but to me it shows it's shifting and hopefully will get you clear .....looking at the shots of your shin there is a vast improvement  

I look forward to your updates as they do give others hope. .....I'm pleased it has made such a difference to your life, let's hope it continues to improve for you

Thank you Jim.

Yes I did wonder if those without psoriatic arthritis would clear quicker. Also other things would come into play like how long you had it, how severe it was and maybe those that had never used a bio would clear quicker.

But it's doing exactly what I wanted it to do for psoriatic arthritis. Actually it's doing better than I thought it would and quickly.