Stelara round two

[Kat]

Fred it sounds like you know where you're going and what you want to do. Sorry to hear your score is higher and that you may end up having to change your treatment, but at least you have an option in reserve.

[Fred]

Fred it sounds like you know where you're going and what you want to do.  Sorry to hear your score is higher and that you may end up having to change your treatment, but at least you have an option in reserve.  

Thank you Kat.

No I don't actually know where I am going to be honest. Part of me says stick with Stelara because it has been good to me, and part of me says try Cosentyx as it may be better.

But like you say I do now have a reserve which is nice to know.

[Fred]

Update Time:

Been for my dermatology appointment today. Not much to report as all is well and I'm staying on Stelara.

The French are still dragging their heals and Cosentyx isn't available yet. But I had already decided to stay on Stelara if I could and keep Cosentyx in reserve.

I've got through the winter now and my scores have gone back down, so it's better the devil I know and carry on as we were. She did say I could try week 10 with 90mg if I wanted, but I decided to stay on week 12 with 90mg.

Psoriasis Score: 3

Psoriatic Arthritis Score: 4

[jiml]

Update Time:

Been for my dermatology appointment today. Not much to report as all is well and I'm staying on Stelara.

The French are still dragging their heals and Cosentyx isn't available yet. But I had already decided to stay on Stelara if I could and keep Cosentyx in reserve.

I've got through the winter now and my scores have gone back down, so it's better the devil I know and carry on as we were. She did say I could try week 10 with 90mg if I wanted, but I decided to stay on week 12 with 90mg.

Psoriasis Score: 3

Psoriatic Arthritis Score: 4

Great news ....I agree to stay on what you know is giving relief ...even if it struggles at times,
Good to see your scores coming down again.
And no doubt Cosentyx will get approval at some time for you and as you say it's good to know there's something in reserve

[Fred]

Great news ....I agree to stay on what you know is giving relief ...even if it struggles at times,
Good to see your scores coming down again.
And no doubt Cosentyx will get approval at some time for you and as you say it's good to know there's something in reserve

Yep I'm a happy bunny.

Uni Time, I'm late again.

[Fred]

Stelara 6 year review

It's been 6 years now I have been using Stelara so I thought I would do a review. I've just looked back through some of my posts in this thread and the old one Stelara 16 Months On. and it's been a good journey overall.

Clearance started within a week and by week 4 all the scales had gone and I was left with flat pink skin. I noticed in my very first post I mentioned that Stelara isn't as good as the other Bio's I had tried for the psoriatic arthritis. And I have had my moments especially when it's damp thinking I was not going to be able to stay on it as psoriatic arthritis is the only reason I went onto Bio's in the first place.

When I first started I did notice some mild headaches and flu like feelings (nothing serious and they passed quickly) I found over time I no longer have a problem and apart from a slight tired feeling for a couple of days after the shot I have had no problems. My blood eosinophils did go high for a while, but never caused any problems and today they are normal.

We had to play around with the dose to try and get it working better for psoriatic arthritis. We gradually reduced from 12 weeks down to 10 and then 8, the 8 seemed the best but I was still finding it tailing off so we tried a double shot 90mg instead of 45mg. 90mg is recommended for those over 100Kg I'm around 95Kg and although at first I didn't think it was working and it made me feel like a zombie we kept playing with the dosage and it ended up 90mg was the one for me.

I have been very pleased overall with Stelara as it has given me my life back. I do think the other Bio's got me sorted with the psoriatic arthritis to start with and Stelara has managed to keep it at bay, it also cleared my skin which in turn made me feel good so that too could contribute to having less of a problem with psoriatic arthritis.

Next: I'm finding that I'm experiencing the Tail Off effect again around week 8 - 10, but this is week 6 and the psoriatic arthritis is playing up because it's raining. So it's looking like 6 years could be enough and it's no longer helping me as much as I would like, maybe it's time to think about moving onto Cosentyx sometime this year.

So to sum up after 6 years use of Stelara:

For:
12 weeks between shots*.
Simple to use.
Fast to work.
Excellent clearance.

Against:
12weeks between shots*.
Can give a mild flu like feeling when first starting.
Can make you feel tired for a couple of days after the shot.
Not so good for psoriatic arthritis as the other Bio's.

*I put both for and against for 12 weeks between shots because whilst it's great to have such a long time between shots, there is nothing you can do if you pick up a virus or infection at say week 4. With the other Bio's you can stop for a while if needed to let your body fight, having said that I have never had any worse flu or coughs than Mrs Fred and no infections.

Score out of 10:
Psoriasis: 9/10
Psoriatic arthritis: 7/10

Obviously we are all different and this is based on my use. But If you are thinking of trying Stelara I can highly recommend it.

[jiml]

Thanks for that Fred it gives a great résumé of your 6 year experience in an easy to understand way

I'm sure it will help others starting out on Stelara and give me something to consider should my current treatment fail  

[Fred]

Thanks for that Fred it gives a great résumé of your 6 year experience in an easy to understand way

I'm sure it will help others starting out on Stelara and give me something to consider should my current treatment fail  

Yes I thought it may help others to give an overall opinion.

[D Foster]

"Next: I'm finding that I'm experiencing the Tail Off effect again around week 8 - 10, "

Hi Fred , I am on week 9 and I am also finding that it's tailing off as I had a very small patch on my right elbow but for the first time it has got quite a bit bigger plus a very small patch started on my left knee. I am using Doverbet on it but I wonder if it may be a time to suggest coming down from 12 weeks ?

[Fred]

"Next: I'm finding that I'm experiencing the Tail Off effect again around week 8 - 10, "

Hi Fred , I am on week 9 and I am also finding that it's tailing off as I had a very small patch on my right elbow but for the first time it has got quite a bit bigger plus a very small patch started on my left knee. I am using Doverbet on it but I wonder if it may be a time to suggest coming down from 12 weeks ?

Hello Dave, I have played around with the dose over the years 45mg - 90 mg / 12 weeks down to 8 weeks but whatever I try, I still notice an up and down scale over the period.

My thinking is that although it's the best treatment I have ever had, my body has got immune to it. I read once that we can get immune to some drugs a bit like a rat gets immune to poison, unfortunately for me I think I have reached the end of the line and can no longer trick my body.

In your case I would say give it a try at week 10 and see how it goes, you can always switch back. I would also recommend anyone to stay on one treatment as long as they can as switching to soon could make things worse.