I have been having PMR like symptoms for four years now. I moved 5 years ago and needed a new doctor here in Utah ( if someone from Utah is here I would love to talk!!! ) It was an exhausting process to find a Dr. Needed referral from primary care and since I didn’t have one being new to the area, it was a little nightmare. Well, fast forward to my actual visit four months later ( actually WITHOUT medication because my old doctor declined my new insurance the Rx for Humira, because they thought I have seronegative RA) the person who was assigned to me is a nurse. She is under a Rheumatologist. But the contact I make is with nurse. She sent me to a rabbit hole of tests, that obviously came back crazy since I don’t have medication, supposing I have RA. I have spent $3,000.00 US dollars in all those tests to be told that I don’t have a Rheumatoid disease. She did a referral to Hematologist but they said they are not concerned. My tests really does not show M proteins. She, in my third visit still doesn’t think I have RA, or PMR. I have inflammation markers high and IgG and IgA elevated , etc. I am expected to taper from 3 mg Prednisone to 2 for three days, then 1 for three days then STOP for four days and see her again. Not to mention her bedside manners are horrific. I tried and went to take 2 mg but the second day in 2 I fell like I was gonna pass out. I decided to continue on 3, for my own sake. I would love to have your opinions on this rather crazy scenario. Thank You Dears!!!
Written by
Alliswellforever
To view profiles and participate in discussions please or .
Hi there,I was raised in Utah, spent the first 24 years of my life there. What area do you live? It’s a large state so health care very much depends on where you are.
It is an excellent hospital. My brother had a health crisis a few months ago and he landed in LDS hospital ICU. He received great care there. I live in North Carolina and go to Duke, also excellent but have run into some real clinkers here, it’s a real chore to navigate these hospitals successfully, you need to be your own advocate.
Is she trying to kill you? Stopping pred that fast, even when you are at 3mg, after a long time on pred is likely to cause an adrenal crisis and you would need at the very least hospital care - if you were lucky, less lucky would have you in ICU and unlucky, dead.
You need to educate her - and remind her your family could sue.
Ha!!!! I’ve been on Pred for four years, I was currently on two but she asked me to reduce to 1 a month ago. I did that and at 12 days I felt like dying. So I had to go back to three. I have absolutely no intention to see her again. Tomorrow I am going to ask for a change of dr. This has been an absolute nightmare, and considering I also have Fibromyalgia it’s mega overwhelming for me right now. In top of everything, she said the Rheumatologist ( in that group) don’t treat Fibro! Won’t prescribe Naltrexone (that help me) and won’t prescribe Flexeril either!!!!! It’s NONSENSE! The fact that I can’t trust my “provider” is a scary thing. Thank You dear for your feedback!
Does the nurse realise what she is doing? Obviously not! She wants you to reduce 33%, then 50% then 100% all in nine days? Tell her she could be up for murder.
The freaking nurse had the nerve to say that she “bet” I had Multiple Myeloma, that I don’t have ANY Rheumatologic Disease. (Said the ‘expert’ right! ) I spent 3 grand on x rays and Battery of blood test. I DONT have MM don’t have any M protein in blood or urine. Her ego is up there and she didn’t even said she was glad I don’t need Hematologist the last time I saw her. It’s insane, literally....
Are you near Salt Lake City? Re Jinasc's suggestion to try a Mayo clinic apparently there is one in Salt Lake City. The "care" you've been offered so far is rather scary.
I spent some time trying to figure out if Lake City was the same as Salt Lake City! Just went back into the site and it is in Minnesota. This was not actually stated on the "about page" which Google presented me with, had to go to "home" to get the address. Oh well, live and learn.
The one Allisforever metnions (University of Utah Hospitals and Clinics) is listed in the Mayo list so hopefully it will turn out OK. Perhaps we will find out later.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
This was not actually stated on the "about page" which Google presented me with, had to go to "home" to get the address. Oh well, live and learn. 
Update re / hospital / PET scan, has any one else been in this situation.... and what would you do
Rheumatologist appointment and confirmed disgnosis
Frustrated PMR vs RA
Too little Pred?
Advice needed please! Tia.
