I am going to my second visit to my Rheumy on Tuesday. At the first visit he said he thinks I could have psa and is running tests. I know I forgot to ask questions at the first one and am afraid I won't think of things until after my appointment this time. Can you give me ideas of the type of things I should ask? I plan to take a written list this time. Thanks for the help in advance.
Did he do a good history on u? I'm not sure what kind of tests they can do for PsA
They can rule out RA with a blood test. Xrays may show erosion of joints. Ask him if he can tell how much damage has been done already.. What can you do to help slow it down.. Physical therapy exercises to stay limber that u can do at home. Is there any special diet that would help with the inflammation
Keep us posted. Thinking of u
Karen
Thanks for the ideas. He did blood and urine work. We already new the RA factor was negative as was the ANA for lupus and the test for lyme disease.. I think he is looking for inflammation markers, but he knows I have inflammation. He even gave me a cortisone shot in my elbow for it. Not sure what else he is looking for.
Good for you, making an agenda for your doctor’s visit. You will find that having it changes the dynamic of the conversation. For the better!
As far as blood work goes, up to 50% of people with PsA have low or no inflammation markers, even while there is inflammation in their bodies. (I’m one of those. My inflammation markers were only slightly elevated, while the inflammation in my hip was so extreme that I major blood loss during THR surgery.) It’s one of the reasons this disease is so often undiagnosed or misdiagnosed.
Have you looked at the PsA book that I recommend in Book Reviews (above)? The e-book is really inexpensive and you could read it by Tuesday. That might give you some good ideas for discussion!
Hey Goofy Pirate,
the book Seenie recommends is well worth the time. It will give you a far better sense of the disease and, therefore, give you ideas about which pieces are most important to you to explore.
I NEVER have inflammation markers--my blood "sed rate" is always marvelous--yet my doctor is quick to point out that while my blood work is normal and my joints show no particularly significant signs of erosion (X-ray and MRI) that he knows I feel cruddy and that he also knows I absolutely positively have PSA (in other words it isn't in my head).
I'm always eager to ask my doctor about how best to work with my symptoms and how to use medications to help deal with PSA on bad days. My doctor is very open to making medication adjustments and trying to rule out drug side effects when I'm having a bad go of it. I now know how and when to use prednisone for flares (and I know what a flare looks and feels like). I also now know when to ask for help with mobility and physical therapy and when to get a cortisone shot. All this to say that there are probably burning questions you need answers to right now and there are also questions (and answers) that will emerge over time as you learn about the disease and how it affects you and your body. Just don't try to cram them all into one appointment!!
To help things at your appointment be sure to keep notes about how you are feeling, what you had been doing if you develop unusual pain or swelling, things you have been eating that might make you feel better or worse. If you and your doctor can work together as a team then you'll be headed on the right track. Good luck making that list!
Thanks for the ideas. I have started reading the book and it is full of good info. Hopefully I will have a good visit with the doctor.
How was your visit?
Goofy Pirate said:
Thanks for the ideas. I have started reading the book and it is full of good info. Hopefully I will have a good visit with the doctor.
My visit went well. All of my labs looked better than he expected so he is starting me on plaquenil (hydroxychloroquine) instead of methotrexate. Of course if it doesn't work we will move on to the mtx. I go back at the end of May to reevaluate.
He thinks I may have quite a bit of joint damage in my elbow since pain was back so soon after the shot of cortisone, I am not surprised by that. It has been painful for over a year and a half. He mentioned giving me shots in my hand at the base of my index finger and my thumb, but wants to wait to see if the meds will help first. I am glad, I know the smaller the joint, the more pain there is with the shot.
I am a marathon runner and it has been very hard for me to not be able to run. I talked with him about that and he said while I may not be able to run a half or full in the next year, I can certainly work toward a 5k or 10k. We just need to get things under control. Until then it will be the stationary bike and yoga for me. :0)
good news/bad news. twas ever thus! Glad to know your labs were good and you have a plan for meds.
It must be hard for you as a marathon runner to hang up your sneakers for a bit. As an endurance athlete being careful or trying to not do too much is probably like screaming into the wind--hard to hear. Do try, though, to pay careful attention to the signals your body sends about overdoing it!
I was a recreational runner and once I was diagnosed I had to stop. I ran a lot on the treadmill in the basement and I know my partner is relieved to no longer have to listen to me singing at the top of my lungs while running sprint intervals!! I had done yoga for about fifteen years on and off (mostly off) but last summer I launched myself into yoga and joined a studio. I also so deep water exercise which helps mobility but it isn't particularly fulfilling but it seems like a duty to my body and it repeats a lot of the exercises I had to do in PT. The yoga, though, that helps my mind and my body and makes me feel incredibly strong. Even just standing in mountain pose is a reminder of all the days that I couldn't muster the strength to get out of bed, let alone stand up without assistance. So on the days where I can do a headstand or wheel or maintain a really good balance, those days make me so incredibly happy for the things I can still do.
Hope to hear soon that you've signed up for some 5Ks.