Feeling defeated

I think when you look everyone is fighting a demon. I have had my share of issues the last few years and yet I talk with someone and feel comforted in the fact life could be worse. PMR is not easy to fight if your not able to shed some stress. Sounds like you need to just say NO. Prednisone is not the answer. Prednisone will continue to deteriorate your body to the point of no return. I think to be successful in taming this monster you will need to reduce stress, watch your diet, and start exercising. They are all important for your well being. Good luck. I wish I had an easy answer.

Hello @nothatkaren, It can be really discouraging battling the PMR beast especially with all the other things you mentioned that you have going on. I'm hoping you get some answers at your upcoming appointment with a rheumatologist. It seems like you were started on a pretty high dose of prednisone at 65 mg if it was only to address PMR symptoms. I know we are all different but I'm not sure going from 65 mg to 20 mg in 2 months has been helpful. @dadcue posted a couple of discussions with some good reference material that might be helpful until you can meet with your rheumatologist.

-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.: https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

Have you thought about writing down a list of questions you have to take to your appointment with the rheumatologist?

And your still standing?
Not to state the obvious but possibly even you upon reflection of what you wrote realized
the world is on your shoulders. Lots talk about setting boundaries and learning how to say no, but
taking about it and actually doing it are points miles a part.
For myself the healing journey started by finally realizing trying to do everything was going to end very very badly. I said no softly at first and then started saying no, and No again and NO again to all the demands.
My spouse was supportive and together we both started the anti inflammatory diet, reduced dramatically our intake of sugar and salt, cut out coffee completely , cut out red meat entirely and increased our intake of salmon. Absolutely no processed food or alcohol of any kind!!!
Daily supplements of Vitamin D,B12,magnesium,Vitamin C.
Regular daily exercise.
All pretty common sense stuff but when I was in the state of mind of thinking I had to do everything and could not say no, common sense is scarce currency.
I believe firmly my former lifestyle led to my diagnosis of PMR with Giant Cell Arteritis
Genetics be damned I have no one to blame but myself for being foolish and abusing my body.
Good luck on your journey.
Cheers

@nothatkaren
The common thread of almost everyone on this platform is stress really feeds this disease. I was diagnosed in July a year and a half ago. I too started on 60 mg. I am just now down to 6, and know that if I try to go down faster, I have a setback. I am on weekly injections of Actemra, hoping to eventually be only on that.
Giving my body time to heal and let me know what it needs is key. @pmrigca you are absolutely right that we have to have a lifestyle change with this disease. We must let go of the way we overuse and abuse our body. Rest is a key component to survival. Seek a therapist to help you talk through ways you can adjust your lifestyle in a comprehensive way that will work for your family.
I would agree that going from 65 mgs to 20 in 2 months seems too much. I have a difficult time moving one mg at a time. Find a rheumatologist you trust who can talk sensibly about what the next year should look like in order to regain your body and mind. Vent when you need to, but make sure you are doing the work of self care.

All of this is easier said than done. But, you have hooked into a group of people who often offer good experiential advise. While there will always be discussions about whether or not prednisone creates more issues than it causes, right now it is the drug that enables us to get out of bed in the morning and make it through the day. I am grateful for that. I will give it the time it needs and listen to my body as to when it is ready to move slowly off of a dosage.

Good luck and peace to you.

HI There - you wrote : " I was started on 65mg of prednisone, which obliterated the pain, but I believe gave me a false sense of security. I have now tapered down to 20, which is not controlling the pain* and I find myself pretty much debilitated." Yikes -- your mention of pain and NOT stiffness is what stands out to me . Are you still in an active disease state I would ask . Ask for a blood draw to repeat your CRP measurement. Ans this assumes the bloodwork has already ruled out some other things . Where do you live that your PCP (?) started you on 65 mg Prednisone ?

Your situation about your career/ post career position (?) seems very unique among the many commenters I know here . " I also hold an elected office, with the election coming up this fall, I need to assess whether I will be able to fulfill my responsibilities should I be the successful candidate." You hold an elected office and now have to campaign until the fall election ? You attend and run meetings ? I took a Medical Leave of Absence because I could not really focus on my job in the morning hours until some very variable time in the afternoon. And I did NOT want to commute feeling like ( at a suboptimal dose of Prednisone -that is)

"I am waiting for a referral appointment with a rheumatologist, and hope I can find some answers." Perhaps insist on a steroid sparing approach to manage your symptoms so you can continue with your elected-official position ? - I bet you can do your job! I bet you know people with RA or MS, for example, that are still managing their careers.

I agree with @johnbishop pass on the webinar he linked above and also this web site PMRandyou.com to your friends and family " to spread awareness" Take a look at this paper I attached , it's not very scientific - the comments from PMR patients are SO relatable ! My friend was miffed that I said I couldn't / wouldn't come to her birthday celebration -"why not take some Advil ?? she mused" -- she had NO idea how I was feeling !!

I hope you are able to figure out a plan forward soon : ) -nyxygirl

"I NEED to get better! Please forgive me for sounding like I'm complaining, but I absolutely need my mobility back."

Sometimes life is more about stepping back and reassessing how best to go forward. You sound like a strong person to me so something tells me you will figure something out.
-----------------------------
"I guess I'm posting in an effort to reach out seeking some hope and optimism, because PMR is really getting me down. I'm only two months post diagnosis, (although I've had unexplained pain for a couple of years). I was started on 65mg of prednisone, which obliterated the pain, but I believe gave me a false sense of security. I have now tapered down to 20, which is not controlling the pain and I find myself pretty much debilitated."

I started out like you until my rheumatologist told me a "stable dose" of prednisone is very important. She told me to find a stable dose of prednisone that worked meaning the dose that controlled my pain. What works for you will be unique to you so there is no correct dose that works for everyone. When you find that dose stay on that dose and reevaluate how you feel.

Your body needs time to adjust and compensate for prednisone and PMR. Pain combined with Prednisone side effects can make you feel defeated. It might be a long term battle (13 years for me) but never give up. I'm off prednisone currently and things have improved. Sometimes the battles are what make us strong.

I’m so very sorry you’re going thru all this. The more I read people’s comments the more I see how dibilating this PMR is in many ways. Hang in there you sound like you have a lot on your plate. I hope you’re getting some outside help so u can take care of you. Our bodies seem to need lots of care with this condition. I’ll keep u in my prayers and I hope this will be a better year for u and your family.

I'm sorry that you were diagnosed with PMR. I can't add anything to what others have suggested. Manage your stress in things you have control over--i.e. an elected office.

I was diagnosed with PMR and possible GCA in July 2024. Started with 60 mg. prednisone, due to the GCA. Finally, after a month or so at 60, I started tapering. I was feeling pretty good, not back to my old self, but better than the previous summer months. Got down to 8 mg the beginning of December and had a flare up. After reading posts on this site about people who have been on prednisone for years, I made my mind up that I didn't want prednisone to dictate my life (although it has been a lifesaver, in some regards). It turned me into a diabetic and the blood sugar spikes are just as bad as the PMR pain. I told my rheumatologist that I wanted her to order Actemra infusions for me. Other's on this site seem to have had good success in reducing/eliminating prednisone, while taking the infusions. I will get my first infusion this Wednesday.

Good luck to you. This is a good community to voice your concerns and questions.

Good for you ropnrose. I did not need to take biologics to reduce my steroid use, but I have seen where it can take up to 8 weeks to start working. Dont give up. good luck.

I agree with much of what’s already been written. Two and a half years in I’m very slowly tapering and accepting wherever I am for however long my body needs to be there. (currently 7.5 mg 3 x a week and 8 mg 4 x a week)
I tried keto but it did nothing for me. I’ve now been pescatarian for over a year and have virtually no sugar in my diet.
Keep hydrated and keep moving - without overdoing it. Walking, stretching, yoga.
And try to grab hold of a positive attitude, appreciating and concentrating on what you CAN do.