Ilumetri for psoriatic arthritis Fred's journey

[Caroline]

Very annoying Fred.
Can get into it easily that you are getting pissed off by the pain when waking up. I know myself how limiting the Psoriatic Arthritis can be. And I consider it as more important than only common psoriasis (except for inverse and GPP).
Anyway I hope your derm can design a way out of it.

I know you won’t go into DMF, but hey, that is completely your own decision. But I am in Jim’s camp at this point.

It is available on prescription overall in Europe under the name Skilarence. So your point #1 is not correct.
For me, as fas as I understand it’s workings as explained by my doctor, it is the only medication that influences the psoriasis right at the point where it starts.
I would be great if they invented a way to deliver the DMF right at the point in the body where it is needed skipping the current sometimes problematic side-effects.

[Fred]

I know you won’t go into DMF, but hey, that is completely your own decision. But I am in Jim’s camp at this point.

It is available on prescription overall in Europe under the name Skilarence. So your point #1 is not correct.

Just to clarify: Skilarence is not available on prescription from my dermatologist in France. I have asked about if before and was pointed to the relevant information on why.

Quote:

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Insufficient clinical benefit to justify its reimbursement in plaque psoriasis due to its low efficacy and an unfavourable safety profile.

The actual benefit of SKILARENCE 30 mg and 120 mg, gastro-resistant tablets, is insufficient in the Marketing Authorization indication, with regard to the therapies available, to justify reimbursement by national solidarity.

You may not like that, but it's fact.

*If you or anyone else would like to continue the conversation about it please start another thread as I won't be using it and this thread is about my journey on Ilumetri.

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Note for reference: Bones feeling a bit better today.

[Turnedlight]

Note for reference: Bones feeling a bit better today.

Well that’s good.
I keep ibuprofen gel by the bed and if my ankle/shoulder is threatening to hurt or wakes me up I use it to get extra sleep.

[Fred]

Note for reference: Bones feeling a bit better today.

Well that’s good.
I keep ibuprofen gel by the bed and if my ankle/shoulder is threatening to hurt or wakes me up I use it to get extra sleep.

I tried it a couple of times but never found it worked for psoriatic arthritis. I think the problem with psoriatic arthritis is it's a bit like psoriasis and we all have it in different ways, I can't really explain how it effects me as I can put up with a lot of it but it's when the pain and the locking up comes in to play that it gets to me.

If you have ever seen the series "Singing Detective" from the 80s there is an episode where the character is in a wheelchair and he plays the part well, I've been lucky enough not to need the wheelchair but there have been times where I feel one would be handy.

But I need to keep my positive attitude and get on with it, yesterday I was all for giving up and changing Bio's at my next appointment next monday but now I'm thinking I need to give it another try for another 6 months and fight it off.

[D Foster]

I think that I have done your trick Fred, I spent all afternoon in a garage replacing a set of batteries in a friend's mobility scooter and I can't hardly move today. I hope that you are a bit better today Fred. As you know I am still on Stelara, what was the drop off you had with the Stelara as I feel like it's not working anywhere near it used to for me.

[mataribot]

Most biologics last around 2 - 3 years. I think your problem may be the fact that your body is use to the IL-23 blocker. I hate how most of the new drugs are SSDD. There hasn't been anything new for PSA in a while. There are a few new ones for psoriasis, but I don't think any of them have been approved for PSA.

On another note, I wouldn't count out the IL-17 blockers just because of Cosentyx. Consentyx is a weight based drug without a weight based dose. Taltz out performed in longevity, but still fails around the 3 year mark.

I agree with staying away from NSAIDs. There evidence to support (from small trials) that long term use of NSAIDs leads to faster joint replacements in people with OA.  While these studies have nothing to do with PSA, but it does suggest masking the pain isn't always a good thing. I hope I don't violate the forum rules with copying a piece of that study here...

"...Our study demonstrated that compared to the non-users, NSAID users have a higher risk of knee arthoplasty. This may be because NSAIDs users had a lower perception in joint pain and disease activity, resulting in poor joint protection from hazardous positions, activities and weight bearings. In addition, patients who are willing to use NSAIDs may be more inclined to receive joint replacement therapy [37]..."

[Fred]

@Dave It got to the point of not being constant with the psoriatic arthritis. We played with double doses and shorter time between shots, but it ended up only giving me a few days relief between shots.

@Mata I think you are right and your body gets used to them, it's a bit like pain killers the more you take the more you need. Unfortunately I have nothing left in the pipeline apart from Bimzelx which is IL 17F & 17A

It's still the same old story "what works for some may not work for others"

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Not much better than yesterday, but a lot better than tuesday and it's raining (which usually makes it feel worse) maybe keeping positive is helping.

[D Foster]

@Dave It got to the point of not being constant with the psoriatic arthritis. We played with double doses and shorter time between shots, but it ended up only giving me a few days relief between shots.

@Mata I think you are right and your body gets used to them, it's a bit like pain killers the more you take the more you need. Unfortunately I have nothing left in the pipeline apart from Bimzelx which is IL 17F & 17A

It's still the same old story "what works for some may not work for others"

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Not much better than yesterday, but a lot better than tuesday and it's raining (which usually makes it feel worse) maybe keeping positive is helping.

It must be ten years on Stelara now Fred, I am down to ten weeks between shot at 90ml and it still works most of the time for the PsA and the P is still well under control but I can tell that it's not as good as it used to be.

[Fred]

It must be ten years on Stelara now Fred, I am down to ten weeks between shot at 90ml and it still works most of the time for the PsA and the P is still well under control but I can tell that it's not as good as it used to be.

I keep telling you it's time to change.

[Forest Walker]

@Dave It got to the point of not being constant with the psoriatic arthritis. We played with double doses and shorter time between shots, but it ended up only giving me a few days relief between shots.

@Mata I think you are right and your body gets used to them, it's a bit like pain killers the more you take the more you need. Unfortunately I have nothing left in the pipeline apart from Bimzelx which is IL 17F & 17A

It's still the same old story "what works for some may not work for others"

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Not much better than yesterday, but a lot better than tuesday and it's raining (which usually makes it feel worse) maybe keeping positive is helping.

Your keeping positive is always good, Fred.  You have figured out a good philosophy for living in general and for living with psoriasis and psoriatic arthritis in particular.