Angie--Re: need advice

[Guest guest]

Angie, I am just now reading your post. I am sorry you are having to put up

with that. It must be really frustrating. Yes, it is true you are going to

have to put up with Stills, but to tell you to stay on a medication you have

had 2 allergic reactions to! WOW! I've just never heard of such a thing.

When I first had the major flare that got me my diagnosis my PCP just

THOUGHT it could be an allergic reaction to my blood pressure medication

(due to the inflammation and rash) and immediately took me off of it. I

can't even imagine being told to STAY on a medication by a doctor who KNEW I

was having an allergic reaction to it! How frustrating.

Hugs,

April

Sent from my Verizon Wireless Phone

Re: need advice

I have been going through some tough times with my doctor. The first one

hoped me for about 7 years and then when all my symptoms came back he tried

one new medication and then just simply gave up. His exact words were " stay

on Actemra, because you are out of options " . This was after my second

allergic reaction to Actemra. So I changed Doctors and as I went to pick up

my medical records from his office, he asked me why I was leaving and told

me that " there were other options " and that it's perfectly okay to get a

second opinion but to come back and he will do what my new doctor says. Too

little too late! I am now going through the same thing with my new doctor.

Last week he told me that how I feel now is " as good as I am gonna get " that

" this is how I will stay " and that " there is nothing else he can do " ! Are

you kidding me? It just seems that they are all willing to help at the

beginning but once they realize that it is a much harder case than they

expected they seem to back away. What happened to doctors who care about the

patient? I think people are going into that profession for the wrong reasons

these days! It is so frustrating.

Thanks for listening

Love,

Angie

Sent from my iPhone

> ! I LOVE the idea of writing things down with the feeling and letting

the doctor read it. THEN having the discussion. I may try this with my RD. I

am confident he is monitoring my illness, but I don't feel like he

communicates how I am really doing and where it truely is TO ME. I think he

is use to patients " worrying " about their illnesses. I don't see anything to

worry about, I just want, and need, to know. Thanks for the idea!

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> April

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> Sent from my Verizon Wireless Phone

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