@pb50

We wouldn't have unless he developed them. I am now doing research on any new drug they try giving to my husband - and myself in the future - to see what the potential side-effects are so we can be on the lookout for them. I do take a drug that I've taken for 40+ years that I need and can't stop, so that drug I never check side-effects because I don't want to freak myself out. I know there's a correlation between knowing a side-effect and experiencing them (because it's in your head - so I've read) yet under the current circumstances and with these serious drugs, I think we need to check them and be aware. Some of these drugs warn to tell your doctor right away when you experience one of the side-effects. I know with us we often wait things out hoping they'll improve. Well, we're no longer doing that and we inform the doctor of any side-effects my husband gets from prednisone, Actemra (so far we have not see any side-effects from Actemra!), statins, etc.

I have done so much research over this past year into my husband's medical conditions that while talking with my physical therapist yesterday, discussing some of the mishaps that happened with our former rheumatologist, he said he thinks I know more than many of the doctors do on these topics. Scary!! But having given it some deeper thought, there are so many diseases with so many different caviots, so many drugs, so many potential side-effects, I suppose they just can't know everything. Like I used to think they did. Now, I think it's up to us to follow-up with our own research and ask lots of questions. If a doctor is perturbed by your questions, seek a new doctor. His former rheumatologist basically made fun of me and told me she didn't need pictures I sent of my husband's swelling temples (I spent over an hour looking for old pictures to compare - since he always wears a cap, it wasn't easy to find). Yet his new rheumatologist, who we like better but who still is behind the times on some info re GCA, asked me to send pictures last week. It's awful to feel dismissed by a doctor. When a person does, I believe it's time to find someone new.