Hi,
I haven't posted for a while, been unable to use my computer for a long time however i am pretty desperate now and decided i needed to ask you all for some advice.
I have been diagnosed with Lupus now for over 3yrs have tried all meds going from hydroxychloroquin to mmf to the last one which was rituximab last summer (2nd dose last June) unfortunatly things have just got progressivly worse and to make things really really bad my rhemy has just been forceably retired!!
i had a great relationship with hom as i'd bulit it up over the past 4 and half yrs, so much so that i travelled from the Isle of Skye in Scotland to Liverpool to see him which id nearly 8hrs along with my fantastic husband and two young children. Although he had no new drugs for me to try he gave me hope for the future which is better than nothing i think.
I have just had 2 appts with a new rheumy in glasgow and am totally confused as to what to do next. he does not seem to have any clue about SLE has no plan for helping with possible treatments and just wants me off the steroids and pain meds without any replacement therapy. I have got down from 17.5mg pred a day to 7.5mg and have increased my morphene patch to 50mg day with the 8x co-codamol.
I am in excruciating pain daily can barely move all my symptoms have got worse. i can't even go out with my children as the sun issues are so much worse!
sorry for the long winded rant but i just wanted you to have a bit of backgroung b4 i asked for help.... can anyone reccomend a good rheumy anywhere in the country that it might be possible for me to see? i have no problems travelling if the journey is worthwhile. I had another scan yesterday and i now have osteoperosis in both hips and spine,
i am only 29 and as i said b4 all i want right now is a wee bit of hope cause i know there is no medication available.
Anyway thanks for listening hope you can help.
Baileys
SLE,APS,IBS,GALLSTONES,OSTEOPEROSIS............
I haven't posted for a while, been unable to use my computer for a long time however i am pretty desperate now and decided i needed to ask you all for some advice.
I have been diagnosed with Lupus now for over 3yrs have tried all meds going from hydroxychloroquin to mmf to the last one which was rituximab last summer (2nd dose last June) unfortunatly things have just got progressivly worse and to make things really really bad my rhemy has just been forceably retired!!
i had a great relationship with hom as i'd bulit it up over the past 4 and half yrs, so much so that i travelled from the Isle of Skye in Scotland to Liverpool to see him which id nearly 8hrs along with my fantastic husband and two young children. Although he had no new drugs for me to try he gave me hope for the future which is better than nothing i think.
I have just had 2 appts with a new rheumy in glasgow and am totally confused as to what to do next. he does not seem to have any clue about SLE has no plan for helping with possible treatments and just wants me off the steroids and pain meds without any replacement therapy. I have got down from 17.5mg pred a day to 7.5mg and have increased my morphene patch to 50mg day with the 8x co-codamol.
I am in excruciating pain daily can barely move all my symptoms have got worse. i can't even go out with my children as the sun issues are so much worse!
sorry for the long winded rant but i just wanted you to have a bit of backgroung b4 i asked for help.... can anyone reccomend a good rheumy anywhere in the country that it might be possible for me to see? i have no problems travelling if the journey is worthwhile. I had another scan yesterday and i now have osteoperosis in both hips and spine,
i am only 29 and as i said b4 all i want right now is a wee bit of hope cause i know there is no medication available.
Anyway thanks for listening hope you can help.
Baileys
SLE,APS,IBS,GALLSTONES,OSTEOPEROSIS............