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Subject: Re: Hoping wednesday will bring some hope!
Hi Abbie, I've replied to you in another post but wanted to respond to the last bit of your post here. As I said, I am in a similar position to you in that treatment isn't working, some isn't suitable and I've been very ill these last 3 weeks, only just getting back on my feet. Very scary as thought I had pneumonia. My point is (ramble,ramble)that I can emphathize with you as seems lots of treatments are not suitable for me. Might be the case for you too. As I understand it, it can take quite some time find the right one and it appears is mostly trial and error. I agree with you that if no new treatment is offered at all then you should ask for a second opinion/another consultant. However, if it is a case of the next treatment not being suitable/not working/horrid side effects maybe you should let them try more......depends on how you feel I guess. The frustration levels I feel are enormous and am sure it is the same for you. The only problem getting a new referral is the wait and then the tests etc. etc. and I imagine it is pretty unlikely that you would get anything any faster. I suppose you could research the different consultants at various hospitals and see who is working at the cutting edge of research etc. but I would be prepared for a bit of a wait if you change and you might be left without immediate access to a rheumy in a crisis in the meantime - certainly one who will have access to your medical history. I would be careful about it. As for the rheumy department not responding to your calls I think that is a separate issue and you could either go to the PALS office in the hospital and make a complaint or tell your rheumy on Wednesday. I ring my rheumy's secretary and that works or I ring the specialist nurses and that sometimes works :) My rheumy rang me this week and discussed my treatment (increased steroids lol!)and am waiting for my appt to be brought forward. I'm sorry you feel so frustrated - it's so difficult to plan anything when you don't know how you will be. I am constantly cancelling things and having to readjust my plans. Grrr!
xx
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