Tapering off of Prednisone

Thank-you ... I will check out what ED582 has to say. To my knowledge, nobody on the other web site is a physician.

I have always been told to taper slowly so nothing new about that. My problem was I could never taper off prednisone no matter how slowly I went.

My doctors were very patient with me until they told me that I was too young to take prednisone for the rest of my life. I was 64 years old at the time so not that young.

I was diagnosed with PMR at the age of 52. More than 12 years on prednisone was an extremely long time to allow me to taper off. I didn't ever want to be on prednisone that long and my quality of life was getting more dismal with each additional year. I rather liked prednisone in the start of PMR for the fast pain relief.

Fortunately, a rheumatologist wanted to try a new approach but didn't offer me any guarantees that it would work. The new approach exceeded everyone's expectations including mine. I was able to taper off prednisone quickly. I went from 10 mg to 3 mg in 4 months. My rheumatologist wanted me to stop tapering at 3 mg. An endocrinologist helped me for an additional 4 months after I reached 3 mg and I eventually reached zero.

Not everything went according to a fixed plan because I needed to go back to 60 mg at one stage. Being off prednisone uncovered an old problem that had been dormant for 12 years. That problem wasn't expected at all. Fortunately, after some adjustments were made, I tapered off prednisone again. I went from 60 mg back to zero in less than a year the second time.

Your story is very interesting. It seems to confirm what I've seen from others with PMR: each person's story is unique and what works for one may not work for others. I do think that a slow taper is a good way to go for most people, and I'm trying that approach while I'm still in my first year of PMR. But, congratulations on finding a way to get off Prednisone after so many years taking it. Bravo to your rheumatologist and to you.

Yes ... you are correct about doing a slow taper. The questions that nobody has ever found any answer to are the following:

How slow is too slow?

How fast is too fast?

How long is too long?

How long does PMR really last and when should I stop taking prednisone?

I don't think we as patients are entitled to know the answer to these questions. No matter how much I listened to my body, I have decided that I had no clue.

Sadly, I don't think doctors have much of a clue either. They at least have a license to give medical advice and prescribe medications.

I had an "interesting" experience with double vision. I think it was generated by PMR inflammation. It has resulted in the opposite of "tapering".

It was confirmed that this is NOT due to Giant Cell Arteritis, based on an MRI of my head, a close physical exam of my head by an experienced ER doctor, a rheumatologist's review of my symptoms, and a large group of blood tests.

Here's what happened: I awoke with a feeling of pressure behind my right eye. It also hurt to rotate my eyes in any direction away from straight forward. I went about my normal activities and took my prednisone as usual.

However, around noon, just after I climbed stairs to the second floor of our house, I started seeing double. This was uncontrollable and very disturbing indeed. Fortunately, my wife, who was shopping at the time, came home shortly, and drove me to the emergency room. Driving myself seemed like a really bad idea. The concern was Giant Cell Arteritis (GCA), which has to be treated immediately. I took an extra 20 mg of prednisone, beyond my usual 20 mg, as a precaution. This seemed to help. The feeling of pressure behind my right eye and the double vision episodes lessened in about 30 minutes, and it continued to get better throughout the day.

As I described above, the ER personnel confirmed that I do NOT have the inflamed head arteries that characterize GCA, and that I did not have a stroke.

However, they could not explain the double vision.

Here's what I think happened: the PMR had inflamed my eye muscles, and they had become very sore and swollen. Climbing stairs increased the blood pressure in my head, further increasing the size of the swollen eye muscles. That generated double vision.

I was diagnosed with PMR on Feb 3, 2023, and have been taking 20 mg/day of prednisone. Unfortunately, this has still left me quite inflamed and sore (recent CRP = 130 mg/l, down from untreated level of 346 mg/l).

Since this double vision episode, the ER doctors and my rheumatologist have upped the prednisone dosage to 60 mg/day. However, I found that the 40 mg dose on the day of the double vision (two days ago) actually seemed to work quite well at relieving my symptoms, and have stuck with that so far.

I was diagnosed with PMR about 15 years ago. For twenty years before PMR was diagnosed I would have problems with my eyes because of uveitis. Uveitis is a serious condition too and caused pain, floaters, light sensitivity, visual disturbances and could lead to blindness if not treated.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734#:~:text=Uveitis%20is%20a%20form%20of,redness%2C%20pain%20and%20blurred%20vision.
I was also diagnosed with trigeminal neuralgia about the same time when I was seeing my ophthalmologist for the treatment of uveitis. He said the temporal headaches and jolts of electricity around my eye had nothing to do with the inflammation inside my eye. My ophthalmologist referred me to a neurologist who made the diagnosis.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344#:~:text=Overview,your%20face%20to%20your%20brain.
Uveitis and trigeminal neuralgia never really went away when PMR was diagnosed. When my rheumatologist told me the symptoms of GCA were headaches with visual disturbances and could cause blindness it made me chuckle a bit. I told my rheumatologist that I had those symptoms all the time.

I explained to my rheumatologist that I usually would take 60-100 mg of prednisone for uveitis and/or trigeminal neuralgia. I asked my rheumatologist how would I know if it was GCA or not?

This is very helpful, thanks. I'm going to message my PCP about this. My symptoms are consistent with posterior uveitis. My rheumatologist already suggested seeing an eye specialist.

I have been on 15mg of Prednisone since July for PMR. I get my health care at Mayo and this was the recommended dose from Mayo.

Because of the prednisone side effects, I have gone to my Dr and am tapering off prednisone. I am at 10 mg at present and will stay at this dose x 1 month and then slowly go down 1mg per month. I will even taper down by 0.5 mg per month if needed. I do have a little more pain but it is manageable. I exercise by walking and or doing arm exercises 30-40 minutes per day, throughout the day.

I am having tachycardia symptoms, fast heart rate, sweating and fatigue which I think was from the prednisone, this is improving with a lower dose of prednisone.

I have decided with my Drs. help that I am tapering off my symptoms and not my labs. Because I have PMR and it is an inflammatory condition, I think my CRPs will always be high, so depending on lab results to taper did not seem to make sense to me in tapering off the prednisone. I do not want to be on prednisone for years. I think the side effects are too much for ME to risk. Everyone reacts differently to prednisone. You may need a higher dose. You must be under an experienced Drs. care when on prednisone! The symptoms I am experiencing from the prednisone are worse than the pain from the PMR so I will manage the pain so I hope this works. We will see.

I went for an eye exam and spoke to my eye Dr. on what to watch for as far as GCA symptoms. That was also very helpful.

I think anyone with PMR needs to see an experienced health care provider that has experience with treating PMR. If they don’t have experience in treating PMR, find someone who does.

All of these posts are answering so many questions I have had over the past 40 years. I now have vision problems but feel I am better armed with information to face my opthamologist. Thanks to everyone who posted such useful information.

Neck pain, and headache are a couple of the symptoms for GCA. Is that what you were diagnosed with? Is your scalp tender to the touch? Jaw pain when you chew? Also symptoms of GCA. Your 40 mg dose of pred. is a near GCA dosage. My suggestions is, if you are having ANY pain, of the above symptoms you probably shouldn't be tapering down. Wait until you are feeling better pain wise, and then begin the next taper. Of course, you need to discuss this with your doctor.

Thanks.

It was confirmed in the ER that this is NOT due to Giant Cell Arteritis, based on an MRI of my head, a close physical exam of my head by an experienced ER doctor, a rheumatologist's review of my symptoms, and a large group of blood tests.

I'm now on 60 mg of prednisone, which is near the upper end for GCA. But that's not what I have.

Since mid Jan 2023, there have been 7 blood tests. There have been MRI's of my head, hips, multiple CTs of my body, ultrasound of my heart, multiple physical examinations, 12 hours spent in the ER under close supervision, and much more I do not recall. I know a PET scan has been ordered that I have not yet received. We have pretty good medical facilities in San Francisco.

The diagnosis of PMR was made on Feb 3, 2023.

I am under the care of a rheumatologist, but many other specialist have been consulted in addition to the highly experienced ER doctors.

The doctors agree this is NOT GCA. They characterize it as an extremely severe presentation of PMR that is also unpredictable.