Health Boards
Fri-20-02-2015, 17:30 PM
Total anti-climax!
Managed to get to the hospital via patient transport only to find my appointment was with the Dermatology nurse NOT the consultant.
I opened my list of questions and dived in.
She showed me my blood scores and explained about 'parameters'. I could actually see that my scores have been quite erratic lately ( or 'up and down like a brides nightie' as my Gran used to say). This contrasted with my latest blood results on the test dose of MTX I took last week which came back all within normal limits.
I asked about the rationale for pulling me off Cyclosporine and was told that the Consultant wanted to " give my kidneys a rest".
I asked about why MTX and not 3rd line treatment (i.e Fumaderm ) but she could not answer. I feel by her response that perhaps she had thought the same but was powerless to override a Consultant.
She did however take all my question down in detail to give him ( he was not available yesterday ).
I really did lay it on about the effect it was having on me physically, psychologically and socially. She is notifying relevant departments and also podiatry and has ordered a lung function test.
I feel stuck as my next appointment is March 24th and I am supposed to take 10mg of MTX today. Not sure if I can hold off whilst I wait for answers as I am in agony and need to do something I don't even know if and what pain relief I can take either as she didn't know the answer to that either.
I have some Tramadol I was prescribed for when I trapped a nerve in my neck and I have looked in depth at it's reactions with MTX and found it is commonly used in tandem for PSA. Should I risk it just for some relief at night???
I'm really getting in a bloody mess again here!!!
Only good news is that my GP has unquestionably signed me off sick for the foreseeable and I noticed on my pay slip yesterday that I had been given sick pay. We have also been advised that we will get help towards our rent ( PHEW !) and my O/H has an interview for a full time job at the local council next week.
Managed to get to the hospital via patient transport only to find my appointment was with the Dermatology nurse NOT the consultant.
I opened my list of questions and dived in.
She showed me my blood scores and explained about 'parameters'. I could actually see that my scores have been quite erratic lately ( or 'up and down like a brides nightie' as my Gran used to say). This contrasted with my latest blood results on the test dose of MTX I took last week which came back all within normal limits.
I asked about the rationale for pulling me off Cyclosporine and was told that the Consultant wanted to " give my kidneys a rest".
I asked about why MTX and not 3rd line treatment (i.e Fumaderm ) but she could not answer. I feel by her response that perhaps she had thought the same but was powerless to override a Consultant.
She did however take all my question down in detail to give him ( he was not available yesterday ).
I really did lay it on about the effect it was having on me physically, psychologically and socially. She is notifying relevant departments and also podiatry and has ordered a lung function test.
I feel stuck as my next appointment is March 24th and I am supposed to take 10mg of MTX today. Not sure if I can hold off whilst I wait for answers as I am in agony and need to do something I don't even know if and what pain relief I can take either as she didn't know the answer to that either.
I have some Tramadol I was prescribed for when I trapped a nerve in my neck and I have looked in depth at it's reactions with MTX and found it is commonly used in tandem for PSA. Should I risk it just for some relief at night???
I'm really getting in a bloody mess again here!!!
Only good news is that my GP has unquestionably signed me off sick for the foreseeable and I noticed on my pay slip yesterday that I had been given sick pay. We have also been advised that we will get help towards our rent ( PHEW !) and my O/H has an interview for a full time job at the local council next week.