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I'm not sure what helps me, Plaquenil and LDN. Down to 3.5 mg after 16 months. My initial pain was completely disabling.
But I also had an abusive appt with a rheumatologist, then he wrote a secret note to my PCP, trying to make me look like a nutjob and lying about what he told me! He refused to even evaluate me for PMR, since I thought of the diagnosis myself. Mind you, I never needed a rheum, my husband and daughter are both Internists . It was my new PCP who has never seen PMR and refused to accept the diagnosis of my semi-retired husband.
Hiding notes from patients is flat out illegal and if they don't produce it within 60days, I will report him to HHS.
Replies to "I'm not sure what helps me, Plaquenil and LDN. Down to 3.5 mg after 16 months...."
I have learned a lot about communicating with doctors in the course of my PMR, the first significant illness I have had at 74 so I have not had much practice. I diagnosed myself with PMR after my PCP said my pain was spine-related and sent me to Pain Management. I had all the classic symptoms but only one of my inflammatory markers was only mildly elevated. I went back to my PCP and didn't tell her my conclusion but just stated all the symptoms that were classic PMR and left off a few that I thought were probably spine-related and just confused the issue. She said, " You have PMR". Doctors like to come to their own conclusions. They also don't like to be given too much information at once. I try to keep it as simple as I can. She gave me a rheumatologist referral but I couldn't get in for 4 months and she did not want to start prednisone. I got worse and called in and left a message with the assistant: I have 3 issues: I can't see the rheumatologist for 4 months, I am spiking fevers, I have a headache at my temple. I got in the next week since they suspected GCA. I was pretty sure the headache was related to the fever and not GCA but I did what I had to do to get taken care of! It helps a lot to have a medical background but the internet can fill in quite a bit. Sandmason, this is not meant as a criticism of how you handled your doctor interaction just my 2 cents about avoiding negative doctor interactions and getting what I am pretty sure I need.
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I am so sorry this happened to you.
Very glad that you have the support and medical expertise of your family. That is a true gift.
Wishing you the best now and in the future with your health and well-being.
Glad the meds helped.