Had an appointment with my dermatologist today and we have decided it's time to come off of Stelara see this post: Coming off Stelara

So here is what is going to happen. I'm going onto a trial of an JAK (Janus Kinase) Inhibitor, but I can't do this until I have a worse PASI/Psoriasis score for psoriasis and psoriatic arthritis Yes I need to get more psoriasis!

After using Stelara for two years my skin was around 99% clear and I was coping with the psoriatic arthritis well, but now it's failing. so I have been given the option to continue with Stelara or go for the Trial. So I have gone for the Trial to see what happens. So if anyone has any experience of the JAK (Janus Kinase) Inhibitors I would be grateful.

At the moment I have a Psoriasis Score of 17 with plaques on the front of my lower legs, and the Psoriatic Arthritis is getting worse. So it's No Medication, No Creams, No Nothing. then an appointment with a Rheumatologist in two weeks time. Two weeks after that an appointment with the top dermatologist. If my score is high enough to commence the trial I will have more tests and start.

If my score has not gone up enough I will have to wait another month. then another and so on, till my score is high enough to start the trial. no one knows how long this will take to get my score higher, but at least I don't have to worry about what is causing my flare ups any more, and can eat, drink, and do what I like  

Ever the optimist I did ask what if my score gets better and actually goes down instead of going up! she said we will see. So I'm coming off any medication and lets see what happens.

I will keep this thread updated as I go on. but for now it's time for some Pizza and Wine.

Hi Fred,

Sorry I have taken a while to get back to you with information about JAKs and JAK inhibitors but I've been completely off my face on Tramadol for a while and been unable to concentrate on the TV never mind read any papers etc. to get you the info that you need.

The Janus Kinase family of enzymes are tyrosine kinase receptors that are involved in cellular signalling in both cytokine signalling (which recruits cells of your immune system to sites of infection/damage) and apoptosis (the normal, programmed cell death process). They possess a catalytic property and set up a chain of cleavage reactions that send signals to the cellular machinery (DNA, RNA etc) and drive processes within the cells when there is infection and or damage.

In some cases of cancer this cellular signalling pathway has been found to be altered, thus preventing the cells from undergoing apoptosis and and leading them to replicate with their compromised/damaged DNA leading to cancerous tumours. This pathway, when overactive is what leads to the cellular signals that promotes the increased replication of these damaged cells and supression of this pathway in cells where it is "faulty". I would assume that this is where it plays a role in psoriasis too. As we know the cells in psoriasis do not receive the correct signals to stop them from replicating leading to an increased production of skin cells. The immune system also plays a role in psoriasis with the recruitment of faulty T-helper cells to areas of the body which are affected. These faulty T-helper cells do not recognise "self".. which means they see our own cells as foreign and attack the cells in an attempt to rid the body of them. This is thought to be the reason behind the redness and inflammation observed in psoriasis plaques and also one of the main reasons behind the development of psoriatic arthritis.

By inhibiting the JAK-STAT pathway in your cells you can reduce the production of cytokines by immune cells thus lowering the number of cells that are recruited to areas of psoriasis. Cytokines act as signal molecules which can be either locally or systemically (whole body) acting and they recruit a number of different immune function cells in infection but can also act as communication molecules between cells in the same tissue type. By lowering the production of these you lower the communication. Also, by inhibiting the JAK-STAT pathway you also allow cells to undergo the normal process of cell death which, in the case of psoriasis where cells are replicating uncontrolled, this can bring in a level of cell replication control and bring about a reduction in plaques.

Because it's a clinical trial there is not a lot of data out there regarding efficacy. I'll keep an eye on pub med over the next few months to see what I can find.

If you need clarification of anything I have written here (I'm aware it's quite scientific) them please let me know.

Krissie

(Fri-01-06-2012, 10:51 AM)Krissie_Wright Wrote: If you need clarification of anything I have written here (I'm aware it's quite scientific) them please let me know.

Krissie

I may need to read it a few more times, but that was an explanation I could understand. Thank you very much for taking the time.

Regards.

Fred.

I can't imagine being in a situation where I would ever want to increase my score - the things you do for science! Good luck Fred, I hope you reach your target sooner rather than later especially now that the summer is here.

(Wed-06-06-2012, 11:33 AM)Lady Bugley-Ah Wrote: I can't imagine being in a situation where I would ever want to increase my score - the things you do for science! Good luck Fred, I hope you reach your target sooner rather than later especially now that the summer is here.

Hello Lady B good to see you again, Yes it is a bit odd wanting more but guess what! My score has gone down from 17 to 11 in the last week

(Wed-06-06-2012, 12:24 PM)Fred Wrote:

(Wed-06-06-2012, 11:33 AM)Lady Bugley-Ah Wrote: I can't imagine being in a situation where I would ever want to increase my score - the things you do for science! Good luck Fred, I hope you reach your target sooner rather than later especially now that the summer is here.

Hello Lady B good to see you again, Yes it is a bit odd wanting more but guess what! My score has gone down from 17 to 11 in the last week

Don't tell me you have been up to a spot of covert sunbathing! Definitely increase the dose of naughty food and red wine or hang out in Wiltshire where weather is miserable today

Had my appointment with the Rheumatologist today, bit of a waste of time really. Recommended Methotrexate the same as the Dermatologist Wakey Wakey Read my notes I will not take Methotrexate Well what about Methotrexate injections then? Please refer to my last answer.

That was about it. apart from telling me I do have Psoriatic Arthritis So it's go back in two weeks to the dermatologist to see if my score is high enough for the Anti JAK trial. my score has gone back to 17 which is about where it was.

Fred thinks what a waste of a day.

Will report back in a couple of weeks.

Update: My appointment got cancelled as the professor couldn't make it. they have said they will be in touch, but at the moment I'm not to bothered as my score is down to 13 so probably wouldn't be given the trial anyway.

Just goes to show with psoriasis and psoriatic arthritis you never know what works and what don't, I'm taking nothing and so far so good. Oh don't worry folks I'm not that daft, I know that will change.

Bloody typical psoriasis when you don't want it you get loads but when you want it the stuff clears up lol

Still no news about a new appointment but my score has gone up to 20.