Prednisone Taper Stories

I share the same question. I was diagnosed with PMR in November and it took a higher prednisone dose than most to remove the pain (max 50 mg/day). I’m now at 25 mg/day, split dose, but the pred is disrupting several other systems and I’m anxious to titrate off. I’ll see the rheumy again in a couple of weeks for my 2nd visit and will ask him as well, but am interested in the experience of this community. Personally, I believe living with some level of PMR pain is likely a more strategic choice than letting the prednisone wreak havoc with my endocrine, cardio, and other functions. Good luck to the OP and I will share what I learn from rheumy visit #2.

It took me two years to taper from 30 mg. I have been completely off for four days now. Until I got to 10, I had permission to reduce by 2.5 mg at a time, but had frequent setbacks either due to increased pain or an elevated sed rate. I had labs every two weeks during that time. Below 10, I reduced by 1 mg per month and sometimes by 1/2 mg. It has been extremely slow, but went much faster after I was put on methotrexate, which I realize does not help many people. I wish you good luck in finding what works for you, but above all be patient.

@petermccarville

I can't agree more!!!

I had a chance internet meeting with an amazing person who had an adrenal crisis because of her long term prednisone use. She wanted me to see an endocrinologist when I told her about my long term prednisone use. She could relate to everything I told her about all the difficulties I had with getting off prednisone. There wasn't much she could do but at least I was able to reverse course and I managed to get off prednisone. I had more problems with people who encouraged me to take prednisone for the rest of my life. I was never certain what "quality of life" that Prednisone offered to me.

The link below is the long preliminary dialog that I had with the person who had the adrenal crisis. We continued to exchange information via email before she died. I credit her with turning my life around. She renewed my quest to find an alternative to prednisone.
https://www.healingwell.com/community/default.aspx
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The endocrinologist I saw had a different perspective than my rheumatologist. However they both shared the common goal to get me off prednisone as soon as possible.

@dadcue Excellent dialogue between “Seashell” and yourself. Very informative and knowledgeable advice.
Advice that I will keep in mind as I taper Prednisone. I now know what specialty of Endochronologist to engage should that be necessary.
Is Seashell still with us?

@stonewheel

I'm so happy someone actually read that dialog. Seashell completely changed how I thought about "long term" prednisone use. In the "short term" I think prednisone is a good medication. I don't know when short term transitions to long term but it is characterized by a decline in a person's health and well being. I was on the decline at the time and doubted that I would live to be 70.

I never met Seashell in person but she sent me her picture before she died. Her story was absolutely incredible. I took it to heart when she told me that I needed to "preserve whatever adrenal function I had left."

We discussed "quality of life" issues on long term prednisone. She said at the end of long term prednisone use there was no quality of life when a person has total adrenal failure. She said every day was one of overwhelming fatigue and losing the will to live to the extent that she was ready to die. She didn't want to return to the land of the living when she was in a coma for six months after her adrenal crisis. Apparently ... she was sent back with instructions to tell someone about her experiences.

I only post the dialog so she can reach a wider audience and tell more people.

Seashell's story must have been before I joined this group. It sounds like I would fine it interesting and helpful as I make decisions about prednisone. Is there a way to go back and read her story?

@csimmonds

The dialog happened before I was a member of this forum and it didn't happen on this forum.. I was new to any support forum at the time. It was the first question I ever asked on any forum. I was struggling to find a way to taper off prednisone. The conversation took place on a "Chronic Pain" forum so it wasn't specifically about PMR/GCA. There were a variety of reasons why people had chronic pain.

I joined a different PMR/GCA forum (not this one) that was promoting and advising me to take Prednisone for the rest of my life. I had already taken Prednisone for 10 years. I was on the verge of giving up and I wasn't going to try anymore to taper off prednisone. Seashell's words inspired me and her message compelled me to keep trying to taper off Prednisone. I succeeded a couple of years later.

Seashell was steroid dependent and was never going to get off prednisone. Her quality of life wasn't so good. She seemed to make it her mission in life to help me even though she was close to dying. She didn't want me to have the same fate as she did.

The dialog I had with Seashell happened a few months before she died. She was a respected member on the Chronic Pain forum. I'm happy that you are interested in what she wrote. I think she wanted to tell everyone. I only wish that she could speak to everyone who struggles to taper off Prednisone. The conversation I had can be seen in the link below:
https://www.healingwell.com/community/default.aspx

I'd like to update to my original post. I went for a follow through with my Rheumo after the first attempt to taper down from 15 mg. My repeat labs had shown an increase in the sed rate (30/85) and a decrease in the CRP (67/34). When he asked about headaches and scalp tenderness, I answered that I often get afternoon headaches and my scalp is sometimes tender. I couldn't really answer how long this has been going on. This heightened his concern about GCA and my dose was increased to 60 mg. Mind you, my headaches are a dull ache on the crown of my head, not the temples and far from acutely painful. But because of my inflammatory markers, my response couldn't be ignored. I've had another follow up and my markers are going in the right direction. Sed rate: 20 and CRP: 3, however, he is still concerned about GCA. Since I'm doing well, he's reduced my 60 mg. to 40 mg daily, but he did strongly recommend the biopsy which I declined. The plan of care now is to repeat labs in 10-12 days and follow through in a month. I assume that we will discuss tapering at that time.
He also asked if I would consider Actemra, if my insurance covers it. I said yes, but I'm really not sure. I will see my Optometrist in a few weeks and maybe she will give me a little different perspective. My gut wants to think that my dull scalp discomfort is any number of benign things from BP and Blood Glucose fluctuations, to a constant state of hunger from the Prednisone, to dehydration and just plain old ordinary stress (all things considered). I also have a new diagnosis of atrial fibrillation and the Prednisone and lack of sleep is certainly not helping my irregular heart beats.
By the way I do have idiopathic small fiber neuropathy which has been less of a concern in terms of discomfort, but lately it seems more pronounced since my PMR pain is relieved overall. My complaint is numbness and tingling down my calves and feet which is a far cry from the pain of PMR. I take Gabapentin 300 mg at bedtime.
So, at this point not only am I interested in the taper stories, but GCA experience.
Thanks for hanging with me.