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Subject: Any thoughts/advice on my current situation.
Sorry in advance if i'm incoherent or i ramble, i'm bloody tired - this weather... honestly... I have been taking stelara (ustekinumab), a biologic for the last 2 and a half years. I saw my dermatologist about a month ago, and she has referred me to the severe psoriasis team up in guy's hospital in london. My appointment is in july.
We also spoke alot about me coming off Stelara, but i'm pretty sure we ended up saying to change nothing, pending the referral. I was supposed to inject my Stelara (i inject every 12 weeks) about 10 days ago. But it hasn't arrived.
I must admit i havn't chased it up (i'm betting that the dermy forgot to write the prescription) because i'm not sure being on the drug is better than being off it. Although it's kept my skin and joints under some control i've always had 'aches and pains' which get worse towards the end of the 12 week cycle, my fingers have slowly twisted. The stelara is also losing it's effectiveness. It's felt as if the drug has had it's hand on a dial that effects my pain levels, energy, amount of sleep needed, mood and even my metabolism. It did take a long time for me to understand this loop, which wasn't helped by the sudden loss of a dear friend just as i originally started the medication. I did manage to go back to work for 6 months but, i've been unable to break out of this cycle for the last 2 years. I've had alot more energy in the last couple of weeks, and been alot more active too (go me!). Not sure what it's due to, possibly: coming off the drug;
recent change in diet;
upping the dose of my pain meds/taking them properly;
the sun; Probably all of them. Unfortunately my skin is breaking out. I havn't resorted to using ointments etc much, but will start tomorrow. Got alot of it on my scalp, which i havn't had since childhood.
My joints have also started 'cracking' more sharply, and just in the last few days i've been getting the tell tail sharp pains. I'm reluctant to call either my dermatologist or the drug delivery company to sort it out. I can't remember the delivery companies name, might be careology or something like that, i've mislaid their details... Not sure what to do.
I'm really really tempted to have a 'medication holiday' until i see the team at guy's.
I could make the calls to have another stelara injection.
Or could see a random GP (My GP is helpfully on holiday till the week after next) and get some methotrexate in me. Thanks for reading this far! Typing all this has helped me sort it in my mind a bit, if only for when i speak to the team in london. Anyway, if anyone has any thoughts/advice on anything at all in here. I'd welcome any experience. Does anyone have similar stelara experiences?
Good lotion for scalp psoriasis or anything to put in the bath?
Experiences of the 'Severe psoriasis clinic' at guy's?
Specialists forgetting to write the script?
The damn humidity!? Chris
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