Does anyone else feel isolated and misunderstood?

I am an avid cyclist. One day Im ridimg 50 miles a day the next I can't get out of bed. I had a similar experience as you, except was diagnosed with PMR quickly. 15 mg was not enough for me. Doc worked with me to increase prednisone to 30mg.. 20 mg am and 10 mg pm. The relief was instant. I woke up pain free. Try it take more prednisone to get some relief. I am on Kevzara now and have gotten off of prednisone. I have some discomfort but so much better than those days of not being able to get up. Hang in there and work on getting med dose dialed in.

This is a safe space to vent. I feel I complain too much to my daughter about prednisone & what it’s doing to my skin, hair & body. I’ll back off. Before was diagnosed I was weeping and curling up on the sofa. Being active then not was horrifying to me. This was my new life at 72?? With new grand babies?? When I was diagnosed early this year the prednisone worked immediately & I sought therapy. I’m not too kind to myself when I’m sick!! Have to work that out. But at around 4mgs of pred now (started at 15 end of March & methotrexate in May). I was lowering every 2 weeks but found I maybe ought to go slower -like monthly. I’m doing good. Sometimes tired as I lower pred but allow myself a 30+min rest. I always felt naps weren’t allowed!! Anyway our journeys w/these drugs are different but we do find elements of similarities & can incorporate some good ideas into our daily lives. We’re all in this together.
What we eat, drink & how we move each day is important as we treat this damn beast PMR!

@lagpmr2024
Very interesting about the weight dosing. I’ll figure that and see where I should be. Thank you, any info is helpful. This is such a crazy disorder 😵‍💫

@lsa22
Thank you! I’m so new to this. It helps to hear what has helped others.

Sams57. Sorry to hear you are hurting. You may be part of our little (?) club here on the Mayo Clinic Connect. If so, welcome. We all care about you. I say "Club" in jest but this is really a fantastic group. Like others have said, Ask whatever question comes to mind. Other people have made great comments about upping your dose. And remember that upping the dose without the Dr is not some sort of slight to the doctor, nor is it "illegal". You are the best person to figure out if the dose helps or not. And, as others have said, it can take a few days for your body to respond. I got lucky in that my first dose of 15 mg took away 90% of the symptoms in a mater of 6-8 hours. I also had classical symptoms of bilateral shoulder and hip pain, and elevated CRP and ESR blood makers for inflammations. That said, you might want to get the primary care Dr involved. in those blood test (CRP and ESR). The primary Dr I have is very familiar with PMR and is better than any rheumatologist that I could have where I live (rural) if I could find one to take my case in a timely manner. You said you have a positive antiCCP which is a test given for possible RA (rheumatoid arthritis). Keep after that, as it is very important marker for RA (https://www.rheumatoidarthritis.org/ra/diagnosis/anti-ccp/index.html). Also get those other inflammation blood tests I mentioned. You MAY have PMR, you MAY not. Sounds to me like that is still unsure. They really need to rule out RA. Don't worry about taking prednisone right now. It is a med used for both PMR and initially when one has RA (until other drugs are tried for it). I am also a big proponent of self education on PMR and other inflammatory conditions. Don't let the technical stuff scare you. Nobody knows everything but everybody can know something about PMR. My journey with it started last April (at 63 y.o, male) and then finally got on prednisone in the beginning of May. Started at 15 mg per day. Have had great results with it and have tapered down to 4 mg without flares or any substantial pain. I truly believe that the PMR is gone and that I am just dealing with the slow taper (heavily suggested) to avoid adrenal insufficiency issues that the prednisone creates. FYI- I have employed some other therapies such as acupuncture, chiropractic, meditation, bone broth and L-glutamine, and high doses of Omega 3 fatty acids (fish oils). These are to address the very high levels of longterm stress that I have been under for a number of years. I believe that this stress may be a crucial component to understanding why I got PMR. I think my central nervous system was overloaded and my bodily systems such as my gut were sending pain messages to my brain when there was not problems (that is a reference to the 4 years of viscera pain (diagnosed as visceral hypersensitivity) that I and no doctors could explain). Eventually my body sent inflammatory compounds such as Interluekin-6 to my muscle-tendon junctures producing inflammation which was diagnosed as PMR. That is a synopsis of MY PMR journey. Everyone has a different journey with PMR. For me, PMR was a wake up call to really do some CHILLING-OUT and address my living perpetually in the " flight or fight" state of being.

@kare1
Yes vent all you want. We are the only ones who truly know what you are going thru. Most of the stories i read are similar to yours, active and full life, then rug pulled out, as was I. I cried, cry, crawled and slept. My PCP was texting me daily , it was so bad. This blog helps me. There’s someone not as fortunate and others more fortunate to encourage me. I have core group of friends to hold me “up”. And i keep active to avoid dwelling “in it”. Thx for listening.

@lagpmr2024 I suspected that dosage was weight-based, but your post has confirmed it. I was around 120 lbs when I saw the rheumatologist (now up to 125) and he put me on 10mg. I had not had total relief after 2 weeks so I asked him about upping the dose. He asked me to be patient and stay at 10mg. After another week or two I had total relief and then went on to feel younger and stronger every day, confirming his suggestion. Then, of course, I had to reduce and followed the dead slow taper. I had no problems tapering, but after a couple of months with no prednisone, I began to feel sore and stiff again, but not like PMR--like feeling really old. He recommended going on a maintenance dose of 2mg, but I did not want to risk further erosion of my bones, skin, and sleep. I have tried various OTC regimens and have found naproxen (Aleve) to have the best results. That has its own problems (histamine reaction to any alcohol, but I can live with that).

My point is, we are all different, including rheumatologists. Their training also sees to be all over the map, so forums like this, where actual suffers share their experiences, is vital. Thank you for sharing!

Re the loneliness: The docs said “PMR's very common.” (They had no problem diagnosing it with me - I had kept a diary of symptoms and they nailed it on the spot.) But looking around, I knew no one who had PMR, had never heard of PMR even though I’m fairly well informed on medical conditions, and in my sprawling city with its multiple hospitals and research institutions, there are no PMR support groups. What’s up with this? Researching PMR online, I saw “PMR is a common disorder,” also “PMR is a rare disorder.” On sites that listed rheumatic autoimmune disorders, not a single one included PMR. Finally I found my way to this group. Without it, I would have been completely lonely.
After a year of Prednisone, I am thank the Lord off it and left with garden variety osteoarthritis that was lurking in the background. But relapses happen, so who knows?

@elsbeth
OTC, try Tylenol for ARTHRITIS too.

Please contact your rheum doc if you are not feeling better after 4 or 5 days.
I started at 15mg and weigh 165 pounds. I talked to doc and went to 20mg before feeling much better. Our weight and drug dosage need to be correlated. I get weighed at every visit with rhuem doc.
You are a very active person so be easy on yourself if you are tired or have problems thinking. I haven't found anything that helps with the brain fog by Prednisone. Some days I take a nap and ease up my to do plans.
I let my friends know I am not up to speed so we can laugh and try to decipher my language thoughts together. My hiking buddies know I am a little slower. It helps if you tell your friends, cohorts and family what you are going through.