New to the forum, not new to psoriasis!

[Grumpy]

Thanks BabyD! I'm so glad I found this forum. I really needed it. And yes, I am surprised at how many of us there are!

So, I had my telephone appointment with the doc. Turns out there was nothing to worry about! Acitretin had been raising my tryglyceride and cholesterol levels, but I've stopped taking it now anyway. But still don't know results of TB test yet, so don't know if I'll be able to start on biologics or not.

Have my appointment to see the specialist dermatology nurse at 12, probably for a pre-biologics assessment. Still haven't had my x-ray though. Wonder if they'll send me to get that done today.

Sorry if I'm boring everyone, by the way! It seems I'm using this as a kind of personal diary now and really just as a place to vent.

[Grumpy]

Back from my appointment with the specialist dermatologist nurse. Spent about an hour with her, lovely woman, very understanding and patient, and explained everything thoroughly to me. Made me feel very comfortable. Very professional indeed.

She confirmed how serious my condition was, and is recommending to the consultant when he's back next week that I be fast tracked onto Stelara, and is starting all the paperwork now for it, as well as for a TB test and x-ray if the consultant deems them necessary. She said the consultant may also consider putting me onto Infliximab, which is not something I knew about - I'd only read up on Humira and Stelara which were the ones the dermatologist said to consider. Apparently, that would be a day case, where you go in for the day and it is administered by a drip.

She carried out a PASI assessment and said that she didn't even need to add up the scores, it was so obviously severe that she was immediately recommending I be fast-tracked.

Apparently, I've been dehydrated and suffering from increased heat loss, which is why I'd been feeling cold and shivering at work the last couple of weeks. I just thought I wasn't wearing enough and the heating hadn't been put on at work yet. She said if I start getting a fever or chills, to take myself straight into A&E. So if you're in a similar situation to me and your condition is getting severe, don't ignore it, get yourself seen! I've also been told I need to be drinking LITRES of fluid a day!

I could be starting the new treatment in as early as a couple of weeks or so apparently. They will actually send someone round to my home to teach me how to administer the treatment, and they will also deliver the medicine to your door as well. You have to be at home, cos it needs to go straight in the fridge, but they'll deliver in the evenings too.

In the meantime, I'm supposed to rest and relax and not do too much, just watch tv, read, etc. Well, who am I to argue with that! 

[Pieman]

hi and welcome grumpy

the name sounds familiar - oh yeah..it's what i call the father-outlaw
indeed good advice given it seems and a potential choice of bio's
as well...we have members here that have plenty experience of each
good luck on coming to an informed decision and that your first choice
provides the remission from p you seek.

am sure the time will fly by - stay positive...hope the screening goes well
and best wishes!
pie

[Grumpy]

Thanks pie! Am trying to stay positive!

Protopic (a non-steroid ointment prescribed by my GP) has been very effective at clearing the psoriasis that appeared on my face in the last few weeks. After only 2 applications, it was substantially cleared, redness gone (still pink though), flattened and no more flaking. It made my face warm and seemed to sting a bit while it was on there, but that's gone now.

Another thing that has helped greatly is Dermol 500. Been using this for the last few days as a soap substitute and all over moisturiser, and it has had a great effect in subduing dryness and itchiness - not completely, but comfort is much improved. I think the combination of emollient and antimicrobial has been very effective. As I have extensive coverage of psoriasis, and had cracked skin and bleeding in places, my skin was probably harbouring a great deal of bacteria that were probably aggravating it more.

So a definite thumbs up for Dermol 500 and thanks to Aginoth for recommending it!    Dermol Cream will be more effective as a moisturiser, but I'm choosing to use Dermol 500 lotion at the moment for practical reasons (ease of application and relative lack of stickiness).

See here for description of use as shower cream replacement and as moisturiser:
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[Grumpy]

Well, it seems a couple of weeks was a bit optimistic - I never believed the nurse anyway when she said it could be as soon as a couple of weeks before I was started on Stelara. It's always longer than they say. And I'm supposed to be being fast-tracked!

Anyway, the derm has approved me for Stelara and I went in last Friday to sign the forms and to get a chest x-ray (to exclude TB). So the forms are being processed and the request being sent to the pharmaceutical company. As long as the x-ray comes back all clear, then I'm good to go.

I was told again by the nurse that I would probably be contacted in 2-3 weeks by the pharmaceutical company to arrange delivery of the Stelara, and then they will arrange an appointment for a nurse to come and administer the injection. So am just hanging on now for the Stelara.

My GP's extended my sick leave till end of the month, but am getting worse in the meantime and even after I start the Stelara, it would be a few weeks before I'd begin to see any effect - that's if it works. I may have to have my sick leave extended yet again. This is really getting ridiculous. Fortunately, my workplace has been really understanding and supportive so far, but there's a limit to patience and I've no idea what my colleagues think about me suddenly going off on leave indefinitely.

I've been trying to stay positive and I know it shouldn't be long now before I start on Stelara, but I've found it harder and harder to keep myself from feeling depressed. My life is on hold now until I can get this damn psoriasis under control. I've also been thinking about how much my psoriasis has held me back in the last 10 years or so, and wondering about all the things I could have done and how my life might have been different if I didn't have psoriasis. I've put up with it for long enough and I don't know how much more I can bear.

Anyway, moan over. When I get started on Stelara, I shall start a treatment diary in another thread to track my progress.

Take care all!