Tremfya for psoriatic arthritis Fred's journey

[Fred]

That is frustrating. Is it an allergic reaction? The stuff works then it doesn't? "Better the devil you know." they say, but I would be looking for another devil.

Hello Bill, I don't think it's an allergic reaction. I did have them with the TNF bio's but this is different, it works and then doesn't. Will see in a week where we go from here, but I still have 4 weeks of Tremfya in me.

[Caroline]

It's very strange Fred how with tremfya it has been a very bumpy journey with several of flares and while you try to see a pattern there is no obvious reason for it .
Life has got less stressful with the Brexit thing behind you and the pension is all sorted out and covid jabs out of the way. You are having good weather . So rather than it being you it seems as if it's the tremfya messing around .
Hopefully it will be sorted out at the upcoming derm appointment have you any ideas about the way forward ?
Have you looked at Bimzekex (bimekizumab) as a possibility as it's an IL-17a  and F inhibitor and might be worth a look if it's approved in France

Yep things are good life wise, so it doesn't make sense.

As for "bimekizumab" it has been given a positive recommendation Bimzelx gets positive opinion from (CHMP) for psoriasis But not yet available in France.

My only option at the moment would be Taltz or Skyrizi but as they are IL17 and IL23 I may as well stay on Tremfya, but I'll see what she says.

*Skyrizi is not easy to get at the moment.

bimekizumab is now registered by EMA, isn't it? So it should gradually become available all over Europe

[Fred]

bimekizumab is now registered by EMA, isn't it? So it should gradually become available all over Europe

Yes it is now, but it will still be a long time before it's available for general use in France. I would say another year at least as France are usually one of the last to start using new treatments.

For example Skyrizi is approved but not in general use in France and it's been over 1 year.

[Forest Walker]

Some years ago, I had a friend with a form of arthritis and an ankle that hurt terribly.  He called those times of worst pain, "saw" days, as he would like to saw off his ankle.  He had a high-energy bird dog (German short-haired pointer) that needed daily running, and we met at the dog park where the dog fetched, single-mindedly, and cared only for the ball and the run.  The friend really suffered a great deal.  

I am sorry to read that you have a very painful ankle, too.  I hope the flare stops as quickly as it began.

[Fred]

Some years ago, I had a friend with a form of arthritis and an ankle that hurt terribly.  He called those times of worst pain, "saw" days, as he would like to saw off his ankle.  He had a high-energy bird dog (German short-haired pointer) that needed daily running, and we met at the dog park where the dog fetched, single-mindedly, and cared only for the ball and the run.  The friend really suffered a great deal.  

I am sorry to read that you have a very painful ankle, too.  I hope the flare stops as quickly as it began.

Thank you FW yes it can be very painful sometimes, but at least I have two.

[KatT]

Did you have your appointment today?

[Fred]

Did you have your appointment today?

No it's next Monday 20th

[Fred]

Had my dermatology appointment yesterday and she wasn't happy with the psoriatic arthritis, so she looked at shortening the time between jabs or doubling up but it's not authorised.

After a very long chat (just over 1 hour) we went through the option of trying Taltz but she wasn't keen as it targets IL 17 the same as Cosentyx and she reminded me that although Cosentyx was good for the psoriatic arthritis it did fail and ended up giving me induced Eczema. Her suggestion in the end was to move over to Ilumetri which targets IL 23 like Tremfya and is currently going through and observational study in France. 

So I have signed up for the trial and will be changing to Ilumetri in a few weeks time. *I will start a new thread when I take my first shot and it will be interesting as Ilumetri isn't prescribed for psoriatic arthritis here yet.

We also spoke about a couple of other things whilst I was there.

1. She agreed that the covid jab could have been the reason the Tremfya didn't work as good as it was and she will pass on my notes as they are looking further into it.
   
2. She said although they are offering a booster covid jab I won't need one as I had already had 3.
   
3. She also agreed with the other doctors about the ankle problem and it was indeed psoriatic arthritis. We may go to rheumatology for an injection, but for the moment let's see if Ilumetri helps.
   
4. She checked a mole on my back I have had for many years because Mrs Fred noticed it was bleeding a little one day, but all was good and it was just that I caught it somehow (probably in the garden)
   
5. Had a lot of other checks whilst there and all was good.
   

Oh interesting point. We got talking about my alcohol intake as she noticed it was showing in the blood tests. She asked if I was drinking more than usual and I said yes because of the psoriatic arthritis and she said 1 or 2 per day or more, I replied more, she said how much, I replied "Too Much" and she laughed. I did say I don't drink till past 18:00 and it was always red wine and she said it was fine. 

So what do I think of Tremfya ?

If you have psoriasis: I would highly recommend it, here is a before and after shot of the worse psoriasis on one of my shins.

Before Tremfya


How it looks today. It got to this point very quickly and has maintained the clearance for 18 months.


If you have psoriatic arthritis: I would say try another bio, Tremfya just couldn't keep it away. But we are all different and I do have very bad psoriatic arthritis.

So time to move again, watch this space as I will add a link to the new thread when I start Ilumetri.

[Forest Walker]

The before and after photos show an impressive improvement.  In the trial, will you be certain to get the Ilumetri medicine?  There is no chance of getting only a placebo, is there?

It sounds as though you had a good, meaningful doctor appointment and plenty of time for discussion.  That's wonderful.

[D Foster]

That's very interesting Fred, if it targets IL23 in many ways it's like half of Stelara. It sounds like you have a very good dermatologist there .
When she said one or two drinks I don't supposed she was talking about buckets Fred. I will look forward to your reports as you start your journey on the new trial.