Stelara round two

[D Foster]

I am definitely effected by the weather if its cold and damp ,I am not bad this morning which is not what I expected as Clare my daughter has had three days of hospital appointments so I have driven around 300 miles and this usually means that I am stiff as a board with aches and pains. My fingers are normally stiff and swollen with gripping the wheel and even they are not to bad just a bit swollen on a couple of joints, it's really difficult knowing what sets it off.

[Fred]

Good to see you on the improve, Fred. I can bring on a serve of arthritis within a day or so with a couple of pieces of low cost bread (so I tend to avoid it). It seems to be the preservatives as I am okay with sourdough and stuff I make myself.

Cheers,

Bill

Thank you Bill, I must admit I've looked at it many times and can never pin point what it is.

Re the bread we don't buy the mass produced stuff, ours come from the local baker. The mass produced crap lasts for 100 years without going mouldy or stale that's because like you say it's full of so many additives, it's wrong to even call it bread.  

[Fred]

Oh Bugger it's all gone a bit wonky this last few days, psoriatic arthritis is flaring up again and this time the psoriasis is joining in.

The psoriasis increase is mostly down to red patches under my arm pits and in my groin, but this is very disappointing I now have a patch of classic flaky pastry going on at the front of my lower right leg. This has come up like this in the last three days.

*Not a great picture as I couldn't be arsed to piss about with the camera.


Psoriasis score has gone up from 5 to 10.

Psoriatic arthritis score has gone up from 6 to 18

Now I'm putting this down to being wound up over my scans going on again (that's another story, results tomorrow) or it could be that Stelara is failing. I've said this before, but it seems to start working again after a while (I'm on month two at the moment) but the psoriasis patch is not looking good.

Anyway whilst at the hospital today for my MRI scan I decided to go past the dermatology department, luckily my dermatologist was there and after explaining what was going on I've come away with a new prescription for next months Stelara and another appointment with rheumatology next month. The reason for getting the Stelara shot was because I wanted it before our little holiday but rheumatology couldn't fit me in till afterwards.

So I'm hoping this is going to subside once tomorrow is finished and I know the results of the scan, I also asked my dermatologist to give me some Dovonex to give a try as I would like to get it clear if possible before our break.

Oh well psoriasis never fails to surprise does it.  

Update done, it's Merlot time.  

[jiml]

That's shite Fred it could be the worry of the scan results . As you say when you get a good report tomorrow hopefully it will subside.
My thoughts will be with you tomorrow ...
Is the sun not helping at all ... At the first sign of sun my shirt is off
You say you have some dovonex isn't that the one you have to be careful in the sun ?

Are you going to take your Stelara early?

Let's hope tomorrow the worry will melt away and normal service an resume

[Fred]

That's shite Fred it could be the worry of the scan results . As you say when you get a good report tomorrow hopefully it will subside.
My thoughts will be with you tomorrow ...
Is the sun not helping at all ... At the first sign of sun my shirt is off
You say you have some dovonex isn't that the one you have to be careful in the sun ?

Are you going to take your Stelara early?

Let's hope tomorrow the worry will melt away and normal service an resume

Thank you Jim.

Nope the sun has made no difference, I've been making a point of trying to get some especially on my legs since noticing it getting worse. But all it's done has dried it up and it's as tight as hell, so I'm going to slap loads of Dovonex on and see what happens. And yes I won't be exposing my legs whilst trying the Dovonex experiment.

I may consider taking the Stelara shot early, but if I do it will only be two weeks early as I'm 95mg now and not 45. My dermatologist suggested sticking with what I know for the moment and continue with the joint rheumatologist/dermatologist meeting next month, and in 4 moths time go back to her and see how things are going. She also dropped me the nod that there maybe something else coming up at the end of the year, but I won't post that here yet as this is still my Stelara thread.

[jiml]

I hope the Stelara will do the trick
But it's nice to know you have something up your sleeve if it should fail

You are lucky you could see your dermatologist as easily, they wouldn't give you the time of day over here

[Fred]

I hope the Stelara will do the trick
But it's nice to know you have something up your sleeve if it should fail

You are lucky you could see your dermatologist as easily, they wouldn't give you the time of day over here  

I can't usually just walk in and see her and she didn't have a lot of time, but she knows I live over an hour away and I don't normally pop in unannounced. But yes I am very lucky as I can always phone her, and if she is busy she will always call me back.

Knock backs like this Jim are a good reminder that there is never a 100% fix and we should never become complacent.

[jiml]

How true we must not get complacent, I never have taken my clear skin for granted .
I'm aware every day that Fumaderm could stop working for me, as although I say I am almost clear, I am still reminded with little flares when I gave reduced my dose to far
But I take comfort knowing from this forum that should it fail there are plenty of choices available and more on the way

[Quest4Cure]

Oh Bugger it's all gone a bit wonky this last few days, psoriatic arthritis is flaring up again and this time the psoriasis is joining in.

The psoriasis increase is mostly down to red patches under my arm pits and in my groin, but this is very disappointing I now have a patch of classic flaky pastry going on at the front of my lower right leg. This has come up like this in the last three days.

*Not a great picture as I couldn't be arsed to piss about with the camera.


Psoriasis score has gone up from 5 to 10.

Psoriatic arthritis score has gone up from 6 to 18

Now I'm putting this down to being wound up over my scans going on again (that's another story, results tomorrow) or it could be that Stelara is failing. I've said this before, but it seems to start working again after a while (I'm on month two at the moment) but the psoriasis patch is not looking good.

Anyway whilst at the hospital today for my MRI scan I decided to go past the dermatology department, luckily my dermatologist was there and after explaining what was going on I've come away with a new prescription for next months Stelara and another appointment with rheumatology next month. The reason for getting the Stelara shot was because I wanted it before our little holiday but rheumatology couldn't fit me in till afterwards.

So I'm hoping this is going to subside once tomorrow is finished and I know the results of the scan, I also asked my dermatologist to give me some Dovonex to give a try as I would like to get it clear if possible before our break.

Oh well psoriasis never fails to surprise does it.  

Update done, it's Merlot time.  

Hi Fred,
It sound like you have a lot going on.
Just a suggestion if you are using dovonex have you ever tried occlusion. As I have mentioned many times before it's the only way that helps me keep P under control and after a few months remission. At least give it a try. What can it hurt ? The purpose of occlusion is to force the meds deep into the derm layers to shut down the small capillary veins that feed P. It's from the outside in. As Stelara (ustekinumab) shuts down the small path way the capillary veins from the inside out....compromising the immune system.

Oclussion used properly can and does help. Alternate with heavy skin conditioners while doing occlusion with steroids. Protect fingers while application with gloves....use olive oil coconut, crisco , zinc...my favorite is magnesium spray it's a great skin barrier or whatever... Your fav...As a alternative to always using steroids. 2 days steroids 2 days skin conditioner. This helps prevent the skin from thinning from steroid use. It is absorbed thru the skin faster than oral use and lasts in the system longer. It take a few minutes a night to do and it's worth the extra fuss....

Try to stay away from water, water pulls moisture out of the skin unless you moisturize 3 minutes after showering. I shower and use a wash cloth with skin-so-soft oil on it to dry. By the time I wipe all my body with the wash cloth with oil I am dry, and my skin is moisturized. Clean skin with glycerine soap no Lauryl sulfates in soaps and detergents for clothing.

Try adding a salt soft water system to your household water system. It's cheap and easy. You would be surprised at the difference it makes on your skin in just a few days. Using cetaphil or generic to wash with it puts moisture back in your skin. Or try glycerine soap (I use), which is a bio component in the skin layers. It is also a skin barrier. My derm who is a P.specialist and works on many clinical studies, always said taking a shower in water is like taking a chemical bath,( well or city water). Protect you skin against sunburn. Your greenhouse may be putting your skin at risk by sunburn and Stelara ( ustekinumab) together can cause a flare before it begins to work.
- STELARA - targets an underlying cause of psoriatic arthritis—an overactive immune system. It blocks two proteins called IL-12 and IL-23 that may play a role in active psoriatic arthritis. STELARA thru the interluken pathway may help reduce joint pain, swelling, and stiffness, as well as plaque thickness, scaling, and redness. It helps many in a few days depending on the severity on the P. coverage and others in a few months.

I take Apremilast for PSA. It helps a lot, hoping to stop the damage to my joints. EVEN my bionic joints hurt. But with Apremilast they don't.. Go figure it's like , oil can Harry.
I have saved a lot of vacuum bags using occlusion. Less skin shedding. No gritty sheets to cleanup... LOL

Just my 2 cents!
Hope your better soon.

[mataribot]

Sorry to see psoriasis flare up. The TNFs tend lose effectiveness over time, but I cant find any data on Stelara. It ultimately failed me. My opinion is the dosing of Stelera is wrong. Many Rheumotologist here subscribe it every month and half, if the insurance will approve the dosing.

Also it's important to understand that the loading dose is used to get enough drug in your system so you can space out the dosing. Since your on a different dose, you may simply need more time or perhaps another loading dose. I'm just giving ideas.