It is with great pleasure that I announce I am finally in remission! After 4 years dealing with PMR I am back and a better version of me! I want to thank everyone in this forum who supported me, answered questions and calmed my nerves. I was a frightened, very sick women when I joined this group. Your support and concerned got me through the raging waters of PMR.
I was one of of the first to take Actemra and really fought with myself about doing so. Thank God I did. Actemra allowed me quickly taper down Prednisone to 7MG then I continued with the "Dead slow and nearly stop reduction plan". Actemra allowed me to continue to work full time and live somewhat of a normal life. The only side effects I had from Actemra was a bit of heartburn in the beginning but that subsided and it shot up my cholesterol from 185 to 295. I did have to go on a low dose statin every other day which I had no side effects from. Now that I am off Prednisone 3 months and the biologic 6 weeks I am happy to say my cholesterol has dropped 85 points and will continue to drop once the biologic is completely out of my system.
Here is what I learned:
The Dead slow and nearly stop reduction plan from this forum WORKS. Do not let anyone tell you otherwise.
Pilates, swimming and walking were the only exercises I could handle. Some days I would have to drag myself to Pilates but by the time I left I felt fantastic. My doctor believes Pilates was essential to protecting my bones which I reversed osteopena!!
Hire a nutritionist if you can! I found one that was covered under insurance. I followed a anti-inflammatory type food plan and took supplements (approved by my dr) and felt a lot better. When I first went on Prednisone my glucose which was always normal went to almost pre-diabetic. I was able to reverse that as well.
Hire a therapist if possible. Cognitive therapy is essential to healing. Dealing with Chronic illness is no small feat. My GP recommended a bereavement counselor as losing your health and lifestyle is a huge lose.
Work with a team of doctors that speak to each other when possible. All of my doctors are in the same network. It was key when treating me.
Resting when that "PMR" feeling starts to take over. I literally would drop everything and take a 15-20 break. During the pandemic working remotely allowed me to do this more often.
Saying no! I love to entertain and cook. I had stop when I got sick. I just couldn't handled it with the fatigue. Also going out at night or long periods of time was out too. All I could manage was work and home. Thankfully that has all changed!
Yes, your hair comes back 
Yes, with good nutrition and exercise the moon face and Prednisone figure goes away.
Tapering was extremely difficult as you get closer to 0. I was at 5MG for a LONG time. Although I was using the Dead slow and nearly stop reduction plan, I would sometimes feel awful for a couple of days when I dropped a dose. Going from 2MG to 1MG was tough. I would feel fluey and a dark cloud came over my head. On those days I rested, watched happy movies or shows, heating pad and either Medical Marijuana or Ibuprofen. I kept a journal of each day so I could compare the data and remind myself that this shall pass.
Peppermint oil helped whenever I had that PMR flu-like feeling. I would rub a drop into the palm of my hands and cup over my face. It helped with the nausea.
A month before the pandemic, I made the decision to retire after 25 years of education. I knew it was time and believed that self care was essential to my recovery. Little did I know what was to come in the following months. I live in Long Island, NY and it was a nightmare to say the least. I am grateful that I had the opportunely to retire as I don't think I could have handled the stress of going back to school in the current climate.
Today, I am a different person. I don't sweat the small stuff anymore. I am also very guarded with any type of stressful environments or people as I know PMR still lurks in the darkness ready to rear its ugly head when activated. If that ever happens, I now have the tools and know-how to tackle this beast!
~Marie xo
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