MCTD: Preparing for evaluation appointment at Mayo Clinic

You will love Mayo! I have PsA and have been seeing a Mayo Rheumatologist in their AZ location for about 5 years. I suggest you make a list of questions and concerns you have so you wont forget to ask them. Also, take a partner or friend with you to write down the answers or important points to remember. It is hard to listen and engage with the doctor while writing down his answers. Good luck!

Thank you for sharing. Yes, trying to get my ducks in a row before appointment.
May I ask what kind of treatment they recommend for your PSA?

How hard is it to get an appointment? Any suggestions about that?

Early treatment for my PsA was with Prednisone, Methotrexate injections, and progressed to biologics due to a severe & reoccurring case of Uveitis (sometimes associated with PsA). I started with Remicade (had a reaction, so I could not take it); and then Humira which I took very successfully for 5 years, until it caused too many infections. I then tried Cosentyx (too many side effects) and started Otezla for a couple years. Otezla only worked about 50% for me, so started Orencia infusions for 2 years. I had my last infusion in late August and have stopped to take a break due to upcoming surgery needed. (My Rheumatologist and I have discussed SimponiAria infusions as my next choice after surgery…if needed.) I may try to stay off any medication to see if my immune system has calmed down as I’ve aged (I am 68) which sometimes will happen. Sometimes older patients may be able to stop biologic treatment and use Medrol Dosepacks, and other more simple treatments if a flare occurs. I hope this has been helpful.

When my husband and I first moved to AZ (apx 15 years ago) I was looking at having elective bowel resection surgery for Diverticulitis. I wanted to become a patient at Mayo Clinic AZ to have this surgery with them. I started by calling the Mayo Gastroenterology Dept on a weekly basis asking if they were accepting new patients. It took a number of months of my calls, until one day I was shocked when I was told “Yes.” I then became a patient there and was given a Mayo Clinic patient number. After my surgery, my goal was to haven a Primary Physician at Mayo; I was able to do this with far fewer calls. Once a patient has a PCP at Mayo, the doctor then can refer them to other specialists as needed. Now all my doctors: Internal Medicine, GYN, Dermatology etc.. are with the Mayo Clinic. (My husband is a patient as well with the same PCP, but sees far fewer doctors since he is very healthy) In my opinion, the knowledge and level of care at Mayo Clinic is far superior to what I have experienced in the past. I hope this answered your questions.

Thank you so much. Supposedly, my Hematologist tried to get me into the Mayo three years ago. His office never called me with the results of that referral, I had to call, and that is when they told me that the Mayo Clinic (Hematology) was not taking new patients. It was on the chat group, when I shared my story that someone told me to refer myself and not to go through a doctor's referral. I created a Mayo Clinic account, asked for an appointment and received a call. The Hematology Department said they were NOT taking new patients, so I asked about Rheumatology, and I was transferred. It turns out that Rheumatology is taking new patients, so I got an appointment. Yay! Foot in the door... Thank you again for sharing your experience.

I have never experienced anything like this before. I'm only assuming that I had a "flare up".
I don't know. I just went from doing a lot of activities to a dead stop because of the fatigue and pain. Taking the Plaquenil for the Lupus (a lot of joint pain and swelling with Reynaud's Syndrome) and now have had one injection of Tremfya which has a side effect of joint pain. It seems like I can't win on the joint pain. Thanks for sharing!

Well, my hematologist supposedly tried to get me an appointment three years ago. I was finally told (after I called his office and never hearing back) that May Clinic was not taking any new patients for Hematology. It was on this chat platform that someone recommended that I try without a referral to get an appointment, so that's what I did. I logged in, requested an appointment and they called me to set up another call, but unfortunately, Hematology is not taking new patients BUT Rheumatology was. Just trying to get my foot in the door and maybe, just maybe I can eventually be seen by the Hematology dept. That's how I got the appointment. Good Luck!

Thanks! Which location did you call?

Jacksonville, FL