Prednisone tapering is challenging. What does remission feel like?

Hi Sandi, I recall being anxious and wanting to taper quickly and wishing the PMR would be cured. I hope your journey is quick. Mine has not been unfortunately . I tapered to 8 mg within a year, I started getting GCA symptoms. I had to ramp up to 40 mg, then tapered quickly to 25, then the slow process again. Once again this past January I had another relapse with excessive, unrelenting PMR back/ hip pain. Back up to 40, then more swiftly to 15 ( within a month). I’ve been tapering VERY slowly since then. Now at 5 but having some difficulty so holding tight at this level.
I’ve had a roller coaster experience, and not sure if it’s typical or not.
Given the new symptoms of numbness in my leg/ foot I’m really thinking it’s a pinched nerve/ some of my lumbar stenosis showing itself. Again hoping your journey is shorter than mine.

I only have had PMR for 4 months, using 15 mgs a day. I just had an MRI and I have stenosis in L2/L3 causing nerve pain in the top of my quads. They are going to try a shot of steroids into that area to see if it will take the pain away.
I do hope that you can continue to walk as that really helps me. Hope you can get an MRI as it really helps the ortho. know what is going on. He said the prednisone helps the stenosis but it is systemic where the shot will be local and will stay in that area for months. the pain goes away for some for a year or more.

I pack a small waterproof lunch bag with an ice pack, an Activia and a Danone immunity booster, which I keep overnight by my bed. When I wake up around 6 to go to the bathroom I go ahead and take my dose of Prednisone,

I discovered chocolate almond milk. I take my prednisone with 8 ounces in the morning. The almond milk has 35% calcium so it adds to my daily dosage of calcium for my osteoporosis.

I am 7 months into this PMR journey and am on prednisone and hydroxychloroquine. I have not been successful with tapering by 1 mg of prednisone, so this time I tapered by .5 mg and it is working great. My plan is to stay on this for two weeks, and then try tapering another .5 mgs. I currently have stiffness in the morning that goes away very quickly as I move around. Soreness and stiffness in my hands has been my biggest issue lately and it is now much better. Due to the hydroxychloroquine? Who knows? Just grateful that something is working. Keep moving folks! We will get through this!

My rheumatologist just diagnosed me -with adrenal insufficiency based on my symptoms. He referred me to an endocrinologist for testing and treatment. So we will see what she says but I feel awful. After 2 and 1/2 years on prednisone I am down to 12mg one day and 13 mg the next, etc. I thought you did not get this until you are below 10 or 7 mg? I am 76 years old. Anyone else experience this?

I too have been diagnosed with adrenal insufficiency. I’m at 5.5 mg; I was hoping to tough it out until my adrenal glands start working again. I have abdominal pain and body aches some days. Most days I just feel weak and tired, with bouts of nausea. I see my rheumatologist next week (she diagnosed me a month ago). My plan is to ask for another cortisol test; then in a few months, another ACTH test. If both aware improving, I’ll hang in there. If not, then I’ll ask for a referral to an endocrinologist. My understanding is the treatment for adrenal insufficiency is more prednisone or hydrocortisone - but I’d like to get my OWN adrenal function back. In the meantime, I carry 10mg prednisone in my purse in case of adrenal crisis; and I wear a medical alert bracelet.

I was told if you come of pred too fast this is what happens.

Your afrena glands can stop working as you come off pred. Thats why its vital you taper very slowly Remember this is an auto immune desease caused by an over activenimmune systrm attacking good cells

My rheumatologist told me I may never regain any adrenal function I guess due to my age, 77. I would love to have it back. I feel much like you do but with very bright facial flushing and I feel very hot most of the time, like my skin is close to a fire. I did taper slowly from 15 mg, now only down to 12 or 13 mg a day after two and a half years. Carrying some prednisone with you is a good idea in case of crisis.