Have an appointment with rheumatology at Perelman Center - UPenn

Specific diet that is helpful?
Exercise that is best? Water aerobics? Am truly looking at PMR or RA?
I am from the Phila area and have been thinking of trying to get an appt at UofP.
Let us know how things go today. Hope that you get some answers and good solutions.

Hi @joan7, Do you mind sharing what your running list of questions are? I think this could be helpful for others as well as prompting other questions that might be good to add to your list. Hoping you get some answers for your questions at your upcoming appointment.

Warm water exercises and walking are great.

Here are some of the questions I have on my list, and if anyone can answer them for me that would be wonderful as well:

- Over the past month, I started having spasm in my lower arms and hands that cause my fingers to contort, my hands to curl inward, and my arms and hands have severe pain from spasming when it happens. My husband gets the same thing. Could this be part of the PMR?

- I’m on Prednisone 10 mg, but my PMR symptoms are starting to return (a lot of inflammation all over) a cough with constant clearing of throat (drip in back of throat), fatigue, out of breath, tingling of extremities, stiffness in fingers legs, etc., inflammatory reaction to foods with salt (lips burn and peel, etc), dry eyes throat and mouth, clusters of fluidy cysts in breasts per mammogram, nodule in left lung per catscan, hair loss, anxiety/grinding teeth all day, GI upset, etc.

- After reviewing my information, do you also think this is PMR or possibly something else?

- What treatment would you recommend?

- What are the chances of me getting GCA? And is there anything to do to avoid it?

- Would it be a good idea to have blood work completed to show what vitamins I may be deficient in?

Thank you so much for your questions. They are greatly appreciated.

I had CatScans, MRI's, PetScan, etc. and they ruled out RA, but I will still bring that up, because you never know if the UPenn doctor may see something different than the other doctors.

UPenn's in person visits were booked out 6 1/2 months at the time I scheduled the appointment. Their televisits were filled into 2025. Isn't that crazy?

I'll definitely update everyone sometime over the next 3 days, and post whatever information the doctor provides. Thanks again!

You might find this helpful for planning your conversation for your upcoming appointment
-- https://www.patientrevolution.org/tools

I am currently seeing a rheumatologist at UPenn and was lucky to get an appointment within two weeks of my diagnosis by my orthopedist. My doctor is extremely responsive to any questions I make through the portal and usually gets back to me within hours. She is helping me navigate the financial quagmire of applying for assistance for Kevzara. I’m back up to 10mg of Prednisone and still having some discomfort but not unmanageable pain. Good luck to you at Penn.

Thank you again!

You are soooo lucky that you were able to get an appointment so quickly. I will definitely keep in mind the portal for future questions.

Medication expenses are truly ridiculous. What I don't understand is when you go on Medicaid at 65, the prices are higher than when you had insurance before that (for most people). Aren't things suppose to get cheaper since you're most likely already retired or cannot afford to retire?

ANYONE INTERESTED in lower medication costs (out of pocket)? My GI doctor mentioned yesterday that Mark Cubin, from Shark Tank, has a new pharmacy available where the prices for medications is a lot cheaper than pharmacy prices (whether insurance covers them or not), because he has cut out the middle man from the process. What I find to be very interesting is that a 90 day supply of medication is only a few dollars more than a 30 day supply. Anyone interested can check it out at https://costplusdrugs.com/.

FOR EXAMPLE: I was shocked by the cost of Nexium. I know that it is an OTC drug, but if you purchase it from a store it costs around $25.99 for the 42 count. Sixty (60) Count thru Cost Plus Drugs is $11, and 90 count is $14 (you would pay thru a pharmacy approx. $52; that a savings of $41).

Went to my appointment yesterday at UPenn Perelman Center, Rheumatology Department. The doctor expressed that he feels that I not only have PMR & Fibromyalgia, but a good possibility I have Post Covid/Long Haulers. I wouldn't be surprised since the timing of Covid and my onset of new symptoms were within weeks of each other and the fact that I never felt a 100% better again.

He wants me to:

o Go for blood work, retesting for Sjogrens, other autoimmune disease, etc. He stated he had cases where positive test results have come back for other autoimmune disease that have not showed up initially and patients blood work was out-of-range in other areas.

o Script for Aqua Therapy

o Authorized Appointments with Long Covid Department at UPenn

o Authorized Appointment with Allergy and Immunology at UPenn

o Biopsy of Salivary Glands (dry mouth is extreme)

o Recommending my Prednisone be increased from 10 mg to 20 mg.

o Return in 6 months, or sooner if needed, for follow-up.

Someone else had mentioned Long Covid months ago, but because I was feeling better I didn't give much thought to it. Hopefully this will get me one step closer to some additional answers.