Depressed over slow progress

I don't have any inspiring words for you but I love this song called "Press On." I like how the main characters are young so slow progress is a lifelong thing.

Your story resonates with me big time (age, single status, osteoarthritis, feeling betrayed by the body). I don't know any more about the treatment of SAI than what I've read here, but it strikes me that augmentation to the plan of "stick at 6 indefinitely" is required here. Yes no? One of the staggered dose approaches?

As I read your post, I think, what if this were me in a few months or a year, what would I do (I'm sitting at my LED of 11.5, currently)? I don't like PMR pain. I don't like osteoarthritis pain (I tried Acetaminophen but it doesn't help, so I take Ibuprofen, though I take it as infrequently as possible). My rheumy is flexible, and so far has listened. I have my stash of pred, and I have no qualms about upping my dose in the future if I think I need it).

I think I'd complain more, and more loudly.

In the meantime, post here. Lot's of people listening.

Similar ……
Check out Tylenol for ARTHRITIS! My dr. Told me abt it.
Great help, ok with prednisone.

I feel like your problem is similar to mine. I’m on 6mg, down from 8mg. Prednisolone. I went down to 4 mg as my rheumatologist asked but it brings back my pain so I go back up. I’ve been doing this for the last couple weeks, trying to get off completely. It’s tough!
And I am also taking two other medications that are supposed to help me taper quickly but so far they’re not helping. I think it just takes time for some of us, more than others.
My dr. Wants me off prednisolone by the end of the year. He says I should consider that at my age (70’s) pain is something I may have to live with.
I’ve made an appointment with a new rheumatologist set for January. She attacks autoimmune disease in a whole different way. Diet and holistically.
Perhaps you should try a new doctor? No one should have to suffer because their doctor thinks it’s natural at their age.
I also go up with my dose when the pain is too much. And then try again another day. All the best to you, and believe it will get better!

I'm so sorry that you're going through this and so many people you need to truly "hear" you and be supportive aren't (for whatever reason). I too find that people outside of this PMR support group: 1) really don't get it 2) can't conceive of just how horrible this disease is, the pain/symptoms & changes to our lives and activities due to our body's inability to do the things we used to, etc. 3) people who AREN'T SICK and maybe never have had anything serious wrong with them, have a hard time listening and being empathetic to those who are. Especially those closest to us that hear it repeatedly in one way or another from us 4) they get jaded in professions that deal with it and hear it from so many they patients they have to just let it run off their backs, so to speak.
It really does make our lives even harder and that's another reason this support group is so incredibly important.
I can empathize with what you're going through, even though I haven't personally experienced it.
Many years of chronic pain have left me feeling much the same as I describe above, because it has gone on for so long. People get worn out hearing about it, but not half as worn out as we are living with it!!!!!
Having recently been diagnosed (7/31/26) and reading almost everything I can here on the PMR support group, I've read where others going through adrenal insufficiency DID eventually get back a lot of their previous ability to do the things they love and want to do. The hardest thing is the "process of waiting" for the adrenals to start functioning enough to actually help you feel better/not as tired, etc. That's the main thing I've read, it's of any help. Here, you are "heard " I have Osteoarthritis in most of my body but I'm still high enough (down to 15mg) to not feel all of my chronic pain YET. I hope that you can feel the care and concern people here have for you and that people who have experienced the adrenal insufficiency will post their experience that might encourage you. "One day at a time" is something that helps me try to keep my sadness/depression about having PMR and breast cancer in manageable "bites." Every day can be different, as you say, so try to hold out hope and belief that the good ones will come again.
Blessings.

Thank you. I know that what you were going through is awful also. The support and understanding from this group is so helpful. I have been feeling bad, that is to say guilty, because I feel like I have perhaps sent my rheumatologist one too many messages. Overall, I do like him and I don’t want him to ghost me, but I am wondering at the same time if I need to find someone who is more aggressive. The problem is how. It is both a blessing and a curse to live where there are two major medical centers, because I need someone with experience, and instead The scheduler wants to let me see only a fellow. Yes I know they are doctors, but I doubt that they have dealt with anybody with my particular set of challenges. I am the victim of several medical mistakes Because of the rarity of my several conditions, and I don’t want to be a victim again.

@potterywoman

I see a Fellow first at all of my rheumatology visits. I like it because they are allowed more time for my visits. Most of the Fellows I have seen are eager to learn which I also like. After about 45 minutes, the Fellow leaves for a few minutes to discuss the plan with the staff rheumatologist. Both the staff rheumatologist and the Fellow return. The last 15 minutes of my visit is a 3-way conversation that includes me,

The staff rheumatologist will ask the Fellow questions about my symptoms who paraphrases the things I told the Fellow earlier. I get the opportunity to clarify anything. I'm not expected to sit there as a passive listener because the staff doctor looks at me most of the time.

My visits aren't always "productive" but I'm happy about all the education that is happening. I have learned many things because the staff doctor and the Fellow discuss doctor-to-doctor things. When I don't understand something they discuss, they will clarify it for me.

In case you haven't run across this previously--Dr. Megan discusses getting stuck. She has another video in which she explains how to identify which of several issues you might be experiencing while getting stuck.

@ga29 Where do you live? I would love to have a doctor who treats this holistically. I’ve been a patient at the Duke Center for Integrative Medicine for almost 10 years, and I am a firm believer in looking outside the silo of traditional medical practice. My excellent PCP retired from there last year, however, and then her replacement left. i saw my rheumatologist only once every 7-8 months, since it was impossible to schedule anything sooner. Prednisone withdrawal going into secondary adrenal insufficiency is my major focus right now and I would love to have a rheumatologist who saw things more holistically. I’m not keen about starting over with a new more traditional PCP (my main option) AND a new traditional rheumatologist. And holistic/integrative practitioners frankly seem generally smarter and more analytical than those who see everything through their narrow lens.

@ga29
my dr said NO MORE than a 10% taper, and stay there until pain free for 2 weeks before nxt taper.
Yours is pretty big. Maybe try less of a cutback.
One way is to do every other day, I.e.
5,6,5,6, 5, 6…..that would be the equivalent of 5.5 which equals 10% of 6mg.
(I’m 80yo)