Back Into Hell

[Caroline]

That's difficult to support on Brigheyes. You're indeed in a hellish situation.
Well at least I read your posts and try to feel a bit along with you.
Keep on going.

Caroline

[Fred]

Well at least I read your posts and try to feel a bit along with you.

@Caroline this thread is gaining quite a following with over 400 hits now, so a lot of people are with you on that.


@Brighteyes When you do go back (Tomorrow is it?) have a go at them, and insist you get your next appointment at least a week before your medication runs out. Better still show them this thread. It's ridiculous the way they are treating you, what the hell is the point in finding something that works for someone, and then letting them get back into this state just for the sake of a few days earlier appointment.

BIG LET DOWN NHS

[Brighteyes]

Well today's the day (around 3.15pm to be precise).

I am going to raise holy hell for my next appointment to be within normal parameters (i.e. before my meds run out).

The last couple of days have been mentally draining. Those bad, old thoughts came creeping back into my head about me being 'useless' and a 'burden on my little family'. It was hard but I gave them a good

Lack of mobility has made me creaky and stiff so am going to book a few sessions with a really good Yoga instructor I know as soon as I'm back on my feet.

I'll be taking the full 320mg of meds for a few days and then, when my skin is stable, I'll slowly reduce the dose as I did before. It's only 6 weeks until our holiday so that's going to be a big plus.

I have pictures to post (yuk) plus I'll post some more 'new and improved ones' at the weekend just to show you how fast the ciclosporin works on me.

[plonky]

Give them hell!

[Brighteyes]

Well would you Adam & Eve it?

I saw a different Dermatologist who seemed shocked as to why I wasn't getting my meds on repeat prescription from my GP.
I told him that my usual Dermatologist requires me to come into hospital for blood test and BP and had led me to believe a repeat prescription from my GP (who is literally at the end of my street) wasn't possible.
He's sending the paperwork to my GP as we speak. I can also have my bloods and BP checked there.
So I've been forking out £16 a time for taxis to hospital all this time when I could have been spared the inconvenience?
We'll see what happens in 3 weeks time when I have to contact my GP for an appointment.
I'm baffled.

[Fred]

Well would you Adam & Eve it?

I saw a different Dermatologist who seemed shocked as to why I wasn't getting my meds on repeat prescription from my GP.
I told him that my usual Dermatologist requires me to come into hospital for blood test and BP and had led me to believe a repeat prescription from my GP (who is literally at the end of my street) wasn't possible.
He's sending the paperwork to my GP as we speak. I can also have my bloods and BP checked there.
So I've been forking out £16 a time for taxis to hospital all this time when I could have been spared the inconvenience?
We'll see what happens in 3 weeks time when I have to contact my GP for an appointment.
I'm baffled.

I hear this so many time with the NHS, and that's why I always tell people it's your body and you should demand a different GP/Dermatologist if you're not happy.

You sound a bit more positive than I thought you was going to be, and that is down to seeing someone different. Your old dermatologist has let you down so again Demand that the one you have seen today is your new dermatologist.

Re your bloods, have you asked about home visits? I'm not sure how it works in the UK, but here Psoriasis and PsA are classed as a long term disabling illness and all I do is phone up the nurse and she comes around to take my blood. The results are sent to my dermatologist and I also get a copy usually within a day in my post box.

Lets hope with a new derm and coming back to Psoriasis Club we can all work together to get you back on track.

[Caroline]

Well would you Adam & Eve it?

I saw a different Dermatologist who seemed shocked as to why I wasn't getting my meds on repeat prescription from my GP.
I told him that my usual Dermatologist requires me to come into hospital for blood test and BP and had led me to believe a repeat prescription from my GP (who is literally at the end of my street) wasn't possible.
He's sending the paperwork to my GP as we speak. I can also have my bloods and BP checked there.
So I've been forking out £16 a time for taxis to hospital all this time when I could have been spared the inconvenience?
We'll see what happens in 3 weeks time when I have to contact my GP for an appointment.
I'm baffled.

This is the exact way it works for me also.
The only thing is that you must keep yourself an eye on changes in your blood values.

[Fred]

@Brighteyes I forgot to mention this the other day, but have you thought of trying Stelara? there was a good report a couple of months ago that may be of interest to you here: https://psoriasisclub.org/showthread.php?tid=1214

I love it, it's given me my life back. I don't have PPP myself but that report looks very encouraging. It could be worth asking, and you would only need one shot every three months.

Fred.

[Brighteyes]

Thanks for the posts and suggestions.
Will give a more comprehensive update in a while but, for now, I'm catching up on sleep.
I just didn't realise how exhausted my mind and body have become this last week. Being on a sofa bed hasn't helped and the amount of physical effort it has taken just to get to the toilet/kettle is phenomenal.
Hard to explain but I feel like all my muscles have contracted due to immobility and being curled up in pain.
Back to Yoga as soon as possible for me.
But for now.................

[plonky]

Yes. Mobility is key to your health and well being more than anything else.