Depressed over slow progress

@tweetypie13
Thanks , I have read this many times on these forums. I told him I thought that was too big a drop, his reply — that’s why I prescribed methotrexate and then KEVZARA. They are supposed to take the place of the steroid, so you should not be having a problem. The methotrexate has never worked.
And it’s been three months, my seventh dose of Kevzara is tomorrow.
I hope it starts working soon!
And I agree it’s too big a reduction!
I will try to cut those 8 mg. pills into smaller pieces.
I’ve asked for 2 mg. so I will get them soon, they will make it easier to reduce.

Know that you are not alone in this battle.I just about cried when I read your story as it was almost a mirror of what I have been going through. I too have a daughter who is very busy with work and family and I try to do this by myself.I did not know there is a co-relation between Prednisone and bone health until I was diagnosed with osteoarthritis in April after five and a half years on Prednisone. I hope you have good medical care and never give up.

Hang in there. It is very lonely. Even if you have a good support system at home people don’t understand what you are going through.

Staying very disciplined helped me. I had one mission, to get better. That meant I pushed off social events and other interactions. It was more important to me to work out, eat healthy, stay calm (lower stress, perform breathwork), pray, and get good sleep.

The good news is this can be overcome. Usually when you beat it, it doesn’t come back.

I found help in this forum. Best of luck- keep fighting and stay positive.

Thanks. This is my first experience with secondary adrenal insufficiency. I had PMR about 4 years ago and tapered successfully, feeling great throughout the whole treatment. I went back on it for some sort of fairly minor flare that I don't even remember now, but tapering from it threw me into prednisone withdrawal, and that plus the SAI has been a whole new experience. On days that the SAI is bad, I don't notice PMR symptoms but when it is more under control, I feel PMR in my upper arms and thighs. We are moving into the holiday season when people travel, and I want to be able to have both Covid and flu vaccines, but am really worried about the SAI flaring. My rheumatologist is not contacting me, but the clinic called and of course just left a message to call back, which I did and got another recording asking me to leave a message. The support in this group is incredible! Otherwise, I would feel completely alone in this journey at this point.

update -- I just got a callback from the rheumatologist nurse who could hardly understand my question, could not track how much medication I am taking (I told her 6mg with an extra when there was a stressful situation); what my symptoms were (I told her several times, listing them very clearly), and who spoke in that sing-songy tone that nurses sometimes use with older patients. As a retired gerontologist, I find this treatment infantilizing and intolerable but had to bite my tongue. When I get angry as opposed to anxious, I think my BP rises and then I feel great, so as I write this I am feeling pretty terrific. Too bad it can't last. I need to speak for myself, not be filtered through a stupid nurse who must have had a couple of weeks of training in rheumatology if that. Perhaps it is time to move on.

Yes. thinking alternating is very helpful!! Thanks

This is THE place to unload & ask questions. My rheumatologist tells me very little so I appreciate this forum.
& Oh hell yeah. We understand what you’re going thru. When hit overnight w/this PMR back at end of Dec2024 (happy new year?!?!?) & started prednisone by March 2025. (End of May rheumatologist put me on Methotrexate).
So much pain fear depression. But prednisone quickly helped me back to be able to do things & I began therapy. So the year of 2025 was manageable as I lowered the prednisone & at least could walk outside & visit my close by daughter & her babies which keep me moving. My daughter is sympathetic but I don’t do too much complaining. I don’t want to bother her w/3 kids under age of 4! I bother the therapist instead!! & I also live alone am 73 & tend to be a loner.
Not always good to be alone in my head.
My pain increased when I got to 3 mgs first of this year 2026. Bummer so I went back to 4mgs which worked. It is now October! & I’m down to 1 mg./1.5 alternating days. That’s how long I’ve taken to drop the prednisone. I did a VERY SLOW taper - too conservative? Who knows. This week I’ll do 1 mg everyday.
I’m surprised at the post saying their PMR is back. Ug. I forgot it’s all about remission not a final cure.
When I get off methotrexate probably into 2027 I’ll see how I do.
So hang on, meditate w/an app helps & of course our diets. Does your living arrangement have a pool? Gentle water movement sure helps me at the Y.
Peace.

Have you considered seeing an endocrinologist? Adrenal insufficiency is really a hormone problem and not a rheumatology problem. You got to where you are based on the treatment for PMR, but your current problem is more in the wheelhouse of the endo specialist. Please consider finding a good endocrinologist and give them a chance to help you.

@jabrown0407 I have an endocrinologist whom I see annually to ensure my parathyroid function is still good, following removal of three of the four glands. SAI is not the same as primary adrenal insufficiency. I keep my endo in the loop about the problem with SAI, and he checked my adrenal function. The tests were normal, although ACTH was on the borderline, but this was after simply delaying my morning prednisone dose. From everything I have read, this approach is not very accurate. His conclusion was only that I am safe to taper. My body says I need to go really slowly. Since the SAI was triggered by a prednisone taper due to PMR, it actually is my rheumatologist who should be monitoring it. As the symptoms of SAI abate, I notice the characteristic PMR stiffness more. Basically, I had a rare reaction (SAI) to a rare reaction to a drug taper (prednisone withdrawal) that was treating a flare for a fairly rare condition (PMR). "Lucky" me.

@potterywoman

"Basically, I had a rare reaction (SAI) to a rare reaction to a drug taper (prednisone withdrawal) that was treating a flare for a fairly rare condition (PMR)."
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Not that rare...
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
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An endocrinolgist said that I needed to be able to maintain a dose of 3 mg less for an "extended period of time." After I was on 3 mg for months, I had to be able to hold my dose for "at least 48 hours" but preferably longer. Once I could manage to do all of that --- an a.m. cortisol level was checked.

I had secondary adrenal insufficiency and was referred back to the endocrinologist for ongoing management of my adrenal insufficiency symptoms which were similar to PMR. In fact ... I still had PMR but those symptoms were being controlled with Actemra instead of prednisone.

The treatment for adrenal insufficiency was to stay on a 3 mg low dose of prednisone, try not to increase my dose and wait for my cortisol level to improve. All the while--Actemra was controlling PMR and not suppressing my adrenal function. I eventually got off Prednisone.

The treatment for adrenal insufficiency reminded me of taking Prednisone and waiting for PMR to burn itself out. Both of which take a long time.