Any Tips For Tapering Off Prednisone?

@sassysaveur I am sorry you are going thru the "not convinced cycle". I on the other hand did not have GCA symptoms, I was totally asymptomatic yet a PET scan lead doctors at one leading teaching hospital to Dx GCA while the doctors at the leading teaching hospital where the PET scan was actually run denied their radiologist report and were not convinced. Since I was asymptomatic, I was confused and frustrated. Back to the diagnosing hospital, another doctor at that center requested an MRI/MRA of my chest. Back to the imaging hospital and it found a possible aneurism in my aorta, it could also be plaque buildup, inconclusive. I am now being monitors by a well-respected, highly trained aorta specialist and will be until I die. Last week I had an MRI/MRA of my head and neck and they found another problem which will require treatment and close monitoring to prevent a crisis. I have no idea what I am in for on this one. My ophthalmologist assures me I have no eye damage or signs of GCA.

What I am suggesting is that you consider pushing for imaging. I have found some rheumy's are reluctant. My treating rhuemy did not order any of mine, it was a PCP and a neurologist that were the ones who wanted to be exhaustive in their diagnostic effort. I wish you the best on your journey.

@dadcue I was offered Hydroxychloroquine and decided against it due to the side effects - here are the ones of most concern -
These are the ones clinicians watch most closely.

Retinal toxicity — maculopathy, vision changes, risk increases with long‑term use
Cardiac conduction abnormalities — QT prolongation, arrhythmias
Hypoglycemia — can be severe
Serious skin reactions — SJS/TEN, DRESS
Neuropsychiatric effects — mood changes, depression, suicidal thoughts
Myopathy and neuropathy — proximal muscle weakness, sensory changes
Bone marrow suppression — anemia, leukopenia, thrombocytopenia

Not my cup of tea - and this is just the tier one side effects. My PMR caused skin fungus, anemia, neuropathy and cardia issues (pericardial effusion) - why would I want to take a pill that might pile on.

Your body seems to be able to adjust to meds easily. I am at the opposite end. I was having hormone problems (thyroid and parathyroid), cardiac problems, GI issues lead to diverticulitis, edema with excessive ankle swelling while on Tyenne for only 10 weeks. The PMR pain was gone.

@cwbf Thank you for your kind words. As you realize most of us are left to sort out facts like these on our own. If sharing helps another PMR patient, I'm good!
Again, thanks for letting me know the value of my comments.

@sassysaveur
So sorry you are in limbo regarding the GCA. I had the strangest onset of my GCA (no PMR as of yet, but sore and stiff exists now and then). I had the biopsy and they couldn't even find my artery on either side, so only have the symptoms to diagnose with. No clear diagnosis - So I guess I am going to error on the side of GCA because it is nothing to mess around with. Like so many have said, you have to be your own advocate and you know your body best. I am in constant denial of having GCA and would like to have a PET/CT of my head if that would tell me, but I fear unless there is a flare up, nothing would show. SO- in summary, I feel like I'm crazy too, still denying GCA (but really know better.) This whole auto immune illness is so elusive and different for each one of us. I will keep checking on this thread to see if someone answers you with a definitive answer! P.S. I did make sure that GCA was in my medical records so if I end up in ER, they can see it.

@jabrown0407

The main thing about any medication is the ability to stop it when side effects happen. It isn’t like people have to continue taking it in spite of the side effects like what happens with prednisone.

@bettsgca I’m curious, did you have elevated blood tests for ESR(sed rate) and/or
CRP(c-reactive protein) ?

@dadcue glad I read this post of yours. I was down to 3 mgs of pred for 2 full weeks, then the 3rd week alternated between 2.5 for 2 days then 3 for one day & all seemed ok. Worked all week long. Last week went straight to 2.5 mgs. Now body is NOT happy. Experiencing pain in butt, 1 knee feels almost swollen but not quite!! (which is new!) hips bilateral pains. I still walk about 2 -3 miles even do stretches but that does nothing to help. At least I can do them but no relief. Bummed. My daughter says try increasing 1/4 mg to 2&3/4 mgs which I haven’t tried yet. I was wondering if I should just stay the course at 2.5 w/pains see if my body adjusts. I was doing so well on the 3 mg maybe I dropped too fast? I know my rheumatologist will say increase dosage like he did at beginning of this year. I did increase them to 4 then slowly back to 3. Seems I’m stumped at 3!? Dang it!! So been on prednisone for 1 yr 2 months. So has anyone tried to reduce or add dosages by 1/4 mgs? Did it work? Does the body appreciate or “approve”?

@sassysaveur
yes both CRP 6.5 and ESR 80

@kare1 eu
I find that some of the pain I can push through and eventually it goes away. I call that my prednisone pain. Sometimes it is intense in my lower calf like the worse charlie horse for hours, then I up that days dose by .5mg. The next day I drop back down again. That seems to be working for me. My taper when I got to 3mg was to drop by .5mg every 3 weeks. Usually the end of first week I'd get pain that would last into week 2 and then week 3 was good. Not this time tho, I'm on 1.5- starting my 4th week as I have been running a low grade temp for the last 10 days. Not sure what I should do at this point. Messaged rheumatologist and waiting to hear back.

@dadcue You may not realize this, but simply going off a drug does not mean the side effects go away, even once you have reached 5 half-lives. Your body sometimes maintains the side effect. It can be difficult to impossible for a side effect to be eliminated. I went 7 years after stopping one drug before a rare side effect no longer was in my life. Also, some of the side effects I listed for hydroxychloroquine can be terminal. The cardiac problems with hydroxychloroquine can be disabling. Since I live alone there is no one here to call 911. I am allergic to the generic of my blood pressure drug and use the brand to manage my hypertension. When I say allergic, this means the generic causes my BP to go into stroke territory. Strokes are silent killers. My BP was 230/130 and the EMTs at the firehouse were amazed I had driven myself over there. I simply went to check my BP cuff because I did not believe it. Just know it is not all about being able to stop taking the offending drug.

I do admit that stopping prednisone can be an issue when there is a medical need. I had to stop after about three months because I was having some extensive surgery. They gave me a month. My rheumy and I proceeded with great caution. I was able to do it without major issues.

You are indeed fortunate that your body accepts and manages your drug needs. You are a true asset to this forum.