Adalimumab Injections

WeeDee, I am new to this illness, but there seems to be so much embarassement associated with p that we don't make a public fuss because we are almost ashamed.

Part2 sorry it is rubbish trying to type on a phone when you have p.arthritis. What I meant to say was make a noise, see your MP. Tell them about the depression and allthe other crap you have dealt with. People need to know how bad this illness can be and how much you need this treatment. I hope you are sucessful. Please let us know how you are getting on

Interesting. Not too sure how the PCT can base a funding decision on something which occurred while you were out the country. Also not sure how they can refuse to prescribe any medication at all. On the basis you are entitled to NHS care then you should receive at least basic treatments which are medically indicated. I am aware there are problems with PCTs agreeing to fund biologics generally eg some areas will only agree to fund a new patient on a biologic when someone already on one comes off it. Other PCTs are only agreeing to fund one biologic and if that doesn't work refusing to fund the alternatives. I appreciate you are probably feeling far from strong enough to deal with it but I stongly suggest you kick up a fuss about this. Ask your consultant to confirm precisely why the PCT is refusing to fund the biologic, ask for the exact wording. Consultants can support patients in asking for a review of a decision so press him/her about this and ask if they are prepared to do so for you. If not, why not? If needs be you may have to get paperwork from your partner to prove you did not pay for the treatment (although as you were abroad again I cannot see how that impacts decisions made in this country). It seems some PCTs will do all they can to avoid paying for biologics for psoriasis even though they are a drug of last resort for people. They are not cheap but there are relatively few people, in absolute numbers, using them in this country. Sadly, as michaelswims wrote, this condition is simply not taken seriously, at least by those people in charge of the purse strings. He's also right about contacting your MP. PCTs are not keen on any adverse publicity. Do you have a local paper which might be interested? Journalists like it when people go to them with stories. Do they have a health reporter or ask for the news editor. Can only suggest enlisting the help of your gp and consultant in your fight. Don't be fobbed off by what anyone says. FInd out as much as you can about the basis of PCT funding decisions either from the medics or the internet. Do any other websites have helpful information eg some of the big cancer charities may do so (it probably isn't something that comes up for the Psoriasis Association too often). And most of all - keep posting here. Hopefully between us we can come up with some ideas. All the best in your fight.

try try and try again..... I'm on the Humira injections and although I'm not totally clear, they started me in the right direction..... sadly the injections cost approx. £7,000 per year, so the PCTs will naturally try to get out of it... you need to have gone through the topical creams, tablets (e.g. Methotrexate) and light treatment before you'll be considered and have to be in a high risk category..... so if you are affected badly and nothing else is working, keep pushing. As for the pregnany scare..... yes they told me about the risks too and I had to make the decision whether to look after ME, or have children...... VERY difficult decision to make, but I chose me. As my mum said, unless you're healthy, you're unlikely to have a successful pregnancy anyway, so best get healthy first. There - to my knowledge - is no conclusive evidence either way, as to whether the faetus is actually harmed, but they have to cover themselves !!! Where I have my treatment, they actually had a lady have a baby whilst on it and the baby was fine..... so although it's a very scary prospect and there aren't any guarantees, it doesn't necessarily mean the baby will be affected. My advice would be look after yourself first..... push push push for a treatment that works..... and then, when you feel better and are more relaxed.... then you can re-consider children. Good luck

WeeDee30, thank you for sharing you story, it left me in tears. I hope that by now, a year after you posted this, that you have had success and managed to secure funding for Humira. I live in the States but I'm from Scotland. I would love to return to live in Scotland one day but the limited availability of Humira scares me! After reading several of these posts I'm shocked to see that only a handful of people are even aware of biologics/Humira! IT CHANGES LIVES!! I wish I could scream it from a roof top, especially when I think of how much suffering could be stopped! I've had psoriasis since I was 14, I'm 34 now. I've gone through up's and down's with the disease. Most recently (while pregnant), my psoriasis returned in my last trimester (I came off of Humira as soon as I discovered I was pregnant). I was miserable for those 3 months (crying, depressed, itching out of control) but it was well worth it. My baby is perfectly healthy! Note: many patients in the USA stay on Humira during pregnancy with zero defects reported. Unfortunately these stories are only anecdotal and actual medical studies have only been conducted on mice. Regarding your difficulty with funding; try contacting Humira directly. In the States they offer a Humira Protection Plan. It's a financial assistance program to help patients pay for the rediculously overpriced medication. They may be able to help you. Don't stop making a fuss...you're right, you CAN'T go back to that way of life! If you are still suffering and unable to get Humira in the UK, move to the States! :) Pathetic that you and so many others are made to go to such lengths for clear skin....something that I never take for granted anymore. Good luck!