Stelara diary

[Fred]

It is very early days... so need to man up and get through it.

Yes you are going to have to be more patient Spotless. It's a great treatment but you will have to calm down a bit as it's not going to happen overnight. I fully understand you wanting it to work quick but saying "not sure if I can get through it if it doesn't continue to improve" is not worth thinking about at the moment.

The recommendation for trying Stelara is 12 weeks, if there is no improvement then they tend to pull the plug on it but not before then unless you have problems.

Yes it can feel like it's getting worse and th itching is usually a sign of the skin healing. So use plenty of Coconut Oil, get your head down and get on with it. You're only on week two and week twelve is a long way away, so wait another ten weeks and then see how it is.



Lecture over.

[Spotless]

Week 3 Dermatology Nurse Appointment went as expected. They are concerned about my joints so they are having lots of talks with the Rheumatologist to see if there's anything else I need to help my joints.

PASI 17 and just waiting for my next injection next week...

[Fred]

Week 3 Dermatology Nurse Appointment went as expected. They are concerned about my joints so they are having lots of talks with the Rheumatologist to see if there's anything else I need to help my joints.

PASI 17 and just waiting for my next injection next week...

That will probably mean Methotrexate.

[Spotless]

Methotrexate won't be on the cards I've been on it before for a long time and it did nothing for me.
They just want to flag it up to see if there's anything else besides the Stelara to help me a bit more...
For now it's just a waiting game...

[Fred]

Methotrexate won't be on the cards I've been on it before for a long time and it did nothing for me.
They just want to flag it up to see if there's anything else besides the Stelara to help me a bit more...
For now it's just a waiting game...

That's good.

Unfortunately Stelara isn't great for psoriatic arthritis if that is the problem with the joints. I don't know of anything else they give along side Stelara so it will be interesting to see what they come up with.

Maybe a switch to Coesntyx would be the way to go, but I don't know if Rheumatologist prescribe it (they don't here as it's prescribed by dermatologist)

Good luck Spotty, let's hope they can find something to get you sorted.

[jiml]

Week 3 Dermatology Nurse Appointment went as expected. They are concerned about my joints so they are having lots of talks with the Rheumatologist to see if there's anything else I need to help my joints.

PASI 17 and just waiting for my next injection next week...

Good luck spotless I hope they find something extra to help your joints ....hopefully the Stelara will help the Psoriatic arthritis ....you are only at week 3 and early to think about changing I would think ...

Hope the next injection has a good effect

[mataribot]

You should know how well your PsA is handle by the time of your first maintenance dose. You take a shot at 0 months, again at 1 month and at month 4 months. So you should see progress by the 4 month. If not I'd have a chat with dermatologist about switching to Consentyx.

[Davieb]

Week 2:
Lots of improvement in the first week but a bump in the road with new p coming up.
Was starting to clear on arms, torso, neck and chest. Scalp is clearing but I don't get much on my scalp. Half of me looks ok. The other half my dear legs isn't. Legs are always stubborn for me. They were looking like they were improving but coming towards week2 they have some what seem to be more itchy raised again and more irritable. Can't sleep because of them. They feel hot and warm. Not making me feel so great. Slapping on loads of moisturising cream to smooth it. Although not great the legs do not look as red as they were before my first injection. 

Skin feels like sandpaper at the moment how lovely... NOT

Still new spots creeping up on my cleared arms though and I'm keeping an eye on it.

Half way point till booster injection not sure if I can get through it if it doesn't continue to improve...

Hi Spotless,
I'm a new member. I'm fortunate inasmuch I don't have skin psoriasis nowadays, but after reading your opening post on this thread and not knowing your full history, have you ever had PUVA treatment? In my early days I had skin (P), my wife by coincidence was training  to be a nurse was doing her dermatology part, she bought me a ultraviolet/infrared lamp so I followed the instructions on use of the lamp to a "t" sat in a room (around 37 yrs ago). I had patchy dry (p) all over my body, it took around 3 months to clear but worked. I'd recommend anyone with skin(P) to invest in one of these lamps and use it cautiously as well as your treatment prescribed by your dermatologist specially when you have a flare up. Please be aware there is a risk of skin cancer using these lamps. There is always the alternative of using sun beds as you'll be aware of with associated risks, i mentioned the lamp as it 's less costs overall. 
Here's hoping your new treatment works and you don't need to buy what I've suggested.

[Spotless]

Thanks for the advice Davieb. But I've had light treatment before, UVA UVB PUVA you name it I've tried it. My skins thinned out from years of topicals so my skins very sensitive to light so I won't be in any hurry to have light treatment again.

Had my first Rheumatologist appointment, feels like I'm going around in circles. Treatment for P and PsA need to work together. They still want to see whether the Stelara will help with the arthritis and was told it can take up to 4-6months to see whether it's effective or not... Was told that methotrexate was an option but I didn't like being on it so they are yet to discuss with the dermo team what options there are. Prescribed with stronger anti inflammatory drugs now...

Had to repeat bloods my haemoglobin count was down... I'm slightly anemic..

4 week injection coming on Thursday and p is slowly improving at a turtle snail pace.

[jiml]

That's a shame spotty I had hoped by now you would be on your way to being spotless  
Hopefully it will work on your arthritis as well. It works well for some on here and hopefully will for you as well   I look forward to hearing what happens after your next injection