Thu-30-06-2016, 21:35 PM
(Thu-30-06-2016, 21:26 PM)Fred Wrote:(Thu-30-06-2016, 21:21 PM)jiml Wrote:(Thu-30-06-2016, 21:16 PM)Fred Wrote:(Thu-30-06-2016, 21:05 PM)jiml Wrote: That's a very interesting study, and I agree with the findings although I think there is a place for uv treatment but usually any clearance is short lived ...so to my mind of course the quality of life is better with systemic treatment and often should be offered much earlier in treatment ....
I have suffered since I was 17 and had countless short term uv treatments which did nothing for my quality of life it was not until I was 60 that I got systemic treatment and it's difficult to express the difference in the quality of my life but for the first time in my life I felt " normal"
Yes same here my time on light was short as was my time on methotrexate, I just gave up in the end and went it alone. That was till I couldn't move in my 50s, but luckily for me the Bio's had arrived and there was more understanding about how it effected peoples lives.
Looking back 30 odd years ago it was different no one cared about your quality of life, it was just a skin problem that would clear up. How wrong were they, I would love to meet those doctors again.
Yes Fred I think we were neglected in those days but thought that's all there was .....how times have changed.
Yep they are lucky today and don't have to suffer in silence like we did. Having said that I think some still do unfortunately, and all I can say to them is "Go and get help, or better still come and talk to us"
Fred I wish there was a place like this when I was younger to get advice, instead of thinking I was on my own ....how I wish dermatologists now would point sufferers to support groups like this....where we can offer support information and advice