Self advocate, stay Sharp!

Even though we might have a very good general practitioner as a doctor, I got a reminder today that we need to keeping learning and be informed on this disease and the treatment(s). I have had a persistent deep sinus infection for 3 weeks and now am on an antibiotic. My GP failed to instruct me to immediately stop taking Rinvoq. I had one of those “feelings” and called AbbVie Care (manufacturer of Humira, Rinvoq etc) and was told that I definitely should go off of the Rinvoq and stay off until the infection clears up completely. Staying on it could allow the infection to go deeper or it could take much longer to clear up. I’m not at all angry at my GP but if I had only gone with her lack of important advice, I could get considerably sicker. I’m also battling the flu for 4 days.
SO…never assume that your GP knows all. They are GENERAL practitioners and just can’t know everything. The pharmacist also didn’t catch the mistake.

I do hope you feel better soon. The beauty of Jak inhibitors like Rinvoq is that they are out your system really fast. The med I’m on namely a biologic called Cosentyx stays in the body for 110 to 155 days, so actually stopping it makes little difference in your situation.

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SO SORRY…it may be that experience of time is what makes a great GP!It is a ever evolving focus for us and not for them.As we live with it.They do have tge burden to focus on the new and emerging diseases to identify.Medicine has gotten very complicated and perhaps the paperwork has gotten in the way of dictors talking to each other.The cost of healthcare is oppressive. My insurance went up $225.00per month.With that being said its hard for to send someone to a specialist.

I’m learning the lesson too. I am working on a set of questions to ask each doctor whenever they want to change my medications. I deal with a rheumatologist, cardiologist, pulmonologist and my GP. I don’t think that consider all of my conditions, and I am feeling it right now!

I know that I feel a bit incompetent when I pull out “The List” at the dr’s but every time I don’t, I miss something important. It sounds like you have your hands full with so many specialist involved.

Amos, don’t feel incompetent in the least! I learned to do The List way back when I was doing chemo. It’s hard enough to remember stuff and keep everything straight when you know you have only X amount of time with whatever Dr you’re seeing. Try doing that with chemo brain…Oi vey!

Doctors are just very educated people who hopefully are in the business to help people and not just to make a bunch of money. (Just kidding) But the way the systems are set up they can not take the time with each patient that they would like so things do fall through the cracks.

You could not give better advice than “Be your own advocate”. Whatever condition we find ourselves living with we need to know as much as possible about it, what to do, not do and the best way to manage it. Which unfortunately is not exactly the same for everyone. I learned long ago to put all meds on The List and when they start talking about another prescription I pull out The List and ask that they check if all of the characters involved will make nice with each other or if the new guy is going to pick a fight on the playground.

Glad you caught that one before a giant rumble got started!


Thanks @Mom_Cat, I appreciate your thoughts. In our Canadian system, the specialists are swamped with patients (not patience) as they are double booked and give about 15 minutes per visit. That sense of being rushed doesn’t lend to very many questions being asked let alone navigate the list. I can see them begin to tune out around 15 minutes because they have to get to the next room and the next…So if only able to see my rheumy once every 14 months, though I have a lot of questions that need answering, time just doesn’t allow for it.

I totally understand that! It’s becoming that way here too. It’s a bit of a mixed blessing, living in a smallish city. We have very good doctors and mostly state of the art facilities, although not a lot of the specialists we need. So the doctors can usually spend more a bit more time with us than we get in large metropolitan areas. But even so, they can’t let other patients stack up too much. But I suppose we all do the best we can. Take care of yourself, Amos. We are indeed our own best advocate :+1:

Well, the story continues since my first post on this thread. After so much head, sinus upper jaw pain that I couldn’t sleep, I decided to go to the dentist. Turns out that a filling that was done on my upper most back molar in fall was not only badly done, two dentists missed a massive cavity at the gum line. A new dentist spotted it and said that the filling completely missed the problem. There was a hole that was well into the root and guess what? It was the source of my sinus misery for over 4 months! It just didn’t click with me how much those upper back teeth are connected with the sinus cavity. So, tooth was pulled a few days ago, and other than jaw pain where she wrestled the tooth out, my sinuses have all but cleared up. Hope this helps others…if you have a persistent sinus infection, get your teeth checked. Getting a tooth pulled also has the benefit of slight weight loss. Hopefully this is the end of things…until the next issue comes around.

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