Hi everyone 
I hope you are all keeping well..my sincere apologies for my rare appearances on the site :blush: although I haven't been around I often think of you all.
Just thought I would give an update about myself and I will try not to complain too much :wink2:
well, I have had a rough year :sad: my health has deterioated to the point were I hardly go out of the house anymore ( mostly only to college one day a week ) I have stopped driving and rarely cook and clean. This is mainly due to the constant joint pain I am in. and any sort of activity sends me into a worse flare up.
A couple of months ago I was refused approval of Rituximab even though I was told I had very high chance of getting it and had waited for 2 months..my new rheumy ( my previous caring one retired ) told me there was nothing he could do for me as the damage was done & I had to live with the pain and adjust my lifestyle accordingly even though I have managed quite well for nearly 16 years until now! oh and he suggested coming off my meds if I don't feel they are helping
I take immuran, hydroxychloroquine, celebrex, ibuprofen and codeine phosphate but they don't seem to be helping much at all. I am unsure as to whether it's the lupus or the RA acting up, I really don't know anymore.
However the good news is that I have an appointment at the Manchester Royal Infirmary on monday! I have waited 8 weeks but hopefully it will be worth it :hehe: so fingers crossed there will be some light at the end of the tunnel..I really hope so because I can't bear to accept that this will be the quality of my life at the age of 38 :worried: thank goodness my children are older!
oh I'm sorry for such a long post thank you for reading/listening ( if you still are :lol: ) and I hope everyone is as well as can be.
hugs to you all
love karen xx
I hope you are all keeping well..my sincere apologies for my rare appearances on the site :blush: although I haven't been around I often think of you all.
Just thought I would give an update about myself and I will try not to complain too much :wink2:
well, I have had a rough year :sad: my health has deterioated to the point were I hardly go out of the house anymore ( mostly only to college one day a week ) I have stopped driving and rarely cook and clean. This is mainly due to the constant joint pain I am in. and any sort of activity sends me into a worse flare up.
A couple of months ago I was refused approval of Rituximab even though I was told I had very high chance of getting it and had waited for 2 months..my new rheumy ( my previous caring one retired ) told me there was nothing he could do for me as the damage was done & I had to live with the pain and adjust my lifestyle accordingly
even though I have managed quite well for nearly 16 years until now! oh and he suggested coming off my meds if I don't feel they are helping I take immuran, hydroxychloroquine, celebrex, ibuprofen and codeine phosphate but they don't seem to be helping much at all. I am unsure as to whether it's the lupus or the RA acting up, I really don't know anymore.
However the good news is that I have an appointment at the Manchester Royal Infirmary on monday! I have waited 8 weeks but hopefully it will be worth it :hehe: so fingers crossed there will be some light at the end of the tunnel..I really hope so because I can't bear to accept that this will be the quality of my life at the age of 38 :worried: thank goodness my children are older!
oh I'm sorry for such a long post
thank you for reading/listening ( if you still are :lol: ) and I hope everyone is as well as can be.hugs to you all
love karen xx
