My treatment
Firstly my apoligies for not been on website to reply to yr questions but my PC packed up thankfully Santa was good to me and brought me a new one
My dermy has misplaced all my photots so i am unable to post them on here but he is trying to get copies of them so once i have them i will post them on here. SORRY :sad:
My treatment is still going VERY VERY WELL. i am down to 2 injections a month instead of once a week and my DLE is still very much under control. i am feeling fantastic.
About my treatment and where i get it
My miracle man as i call him is at LEEDS GENERAL HOSPITAL and Chapel ALLERTON HOSPITAL his name is Doctor GOODFIELD and he is brilliant. He has changed my life completely after suffering constant pain for 10 years.
The clinical trial injection is called RAPTIVA EFALIZUMAB.
A district nurse came out once a week for three weeks and trained my husband to inject me. You can opt to inject yourself if you feel confident to do that but i am a wimp and opted out of that one:lol:. The injection is used for people with psoriasis but doctor goodfield is trailing it for people with DLE. I was the second woman in the world to try this clinical trail and it has worked for me. Obvisiously i had to report of any side effects the injection has had, as they was only this other woman in Sweden trailing it. The only thing i will say is please persevere with the headaches for the first week once that week is over it is fine. I have had NO other side effects.
The injection gets delivered to your door and you always have a good few weeks supply, Serono ( name of the suppilier ) rings you up when you are due your next delivery. They too are very nice people.
I have now been on the trail for 2 years and doing very well and i think why should people suffer like i did ,when they is treatment out there. So i hope this post is of some use to you all suffering with severe DISCOID.
Take Care to you all and please dont suffer in silence like i did, dig your heels in and demand this treatment.
lots of love Denise x
Firstly my apoligies for not been on website to reply to yr questions but my PC packed up thankfully Santa was good to me and brought me a new one
My dermy has misplaced all my photots so i am unable to post them on here but he is trying to get copies of them so once i have them i will post them on here. SORRY :sad:
My treatment is still going VERY VERY WELL. i am down to 2 injections a month instead of once a week and my DLE is still very much under control. i am feeling fantastic.
About my treatment and where i get it
My miracle man as i call him is at LEEDS GENERAL HOSPITAL and Chapel ALLERTON HOSPITAL his name is Doctor GOODFIELD and he is brilliant. He has changed my life completely after suffering constant pain for 10 years.
The clinical trial injection is called RAPTIVA EFALIZUMAB.
A district nurse came out once a week for three weeks and trained my husband to inject me. You can opt to inject yourself if you feel confident to do that but i am a wimp and opted out of that one:lol:. The injection is used for people with psoriasis but doctor goodfield is trailing it for people with DLE. I was the second woman in the world to try this clinical trail and it has worked for me. Obvisiously i had to report of any side effects the injection has had, as they was only this other woman in Sweden trailing it. The only thing i will say is please persevere with the headaches for the first week once that week is over it is fine. I have had NO other side effects.
The injection gets delivered to your door and you always have a good few weeks supply, Serono ( name of the suppilier ) rings you up when you are due your next delivery. They too are very nice people.
I have now been on the trail for 2 years and doing very well and i think why should people suffer like i did ,when they is treatment out there. So i hope this post is of some use to you all suffering with severe DISCOID.
Take Care to you all and please dont suffer in silence like i did, dig your heels in and demand this treatment.
lots of love Denise x