PMR and tapering -- will blood work change?

Hi zaa, A couple of days following a minor ankle injury, I had severe pain and stiffness all over my body. from the neck to the feet and hands for 9 - 10 months unlike anything I experienced, undiagnosed because I waited to go to the doctor, then lab work and x rays didn't show anything. Then gagging attacks started with sore stomach, about seven months. Read a lot about the vagus nerve and did vagus nerve reset exercises. I had an incredibly stiff neck, with pains on both sides of the head, which exercises from the physical therapist did little to correct. I noted scalp tenderness when I touched my scalp. Had a dry, non productive cough that started around 5:00 pm every night and breathlessness when speaking - I couldn't finish sentences with the breath I was taking in.. I had strange pulsating sensations on the right side of my face, extending from the ear to the nose. Eventually, these became short stabbing pains that would last a couple of seconds, but became more frequent (I counted 25 one afternoon in a two hour period). I had a couple of episodes of not being able to see out of my right eye. I could not focus and could only see white. These came on a few times, then ceased. I was extremely fatigued, especially after walking and blood work showed anemia. Then developed shingles, even after having the Shingrex vaccine. Also, I had no desire to eat and lost 12 pounds. My brother, an infectious disease doctor, reviewed my labs and told me what tests to request my doctor to order. He resisted, but did the tests. My inflammation markers were so high, I was referred to a rheumatologist. Started on 10 mg of prednisone, but it did not resolve all my pains (I told him I was 60% better). He ordered the biopsy of the temporal artery and I was positive for Giant Cell Arteritis. I was familiar with the disease as my mother-in-law had it, but stunned that I had it as my symptoms were so different from hers. She was classic text book presentation. I was started on 40 mg. prednisone, tapering down by 5 mg every two weeks. Had incredible energy, euphoria almost, and the horrible stiff neck went away. My appetite came back. So pay attention to your symptoms. I started keeping a journal, "My Book of Pain", which was useful for the first appointment with the Rheumatologist via Zoom because I could summarize my symptoms for the past year. I hope things work out for you. Aloha, tsc

When you say “taking it slow” how long do you go before dropping to the next lower dose and do you drop by 1mg or less?

There are a number of methods that people seem to use to taper. The method I use is based on a method from England, I think. Going from 5 to 4, I do 4 days of 5, then 1 day of 4 for awhile. Then I do 3 days of 5, 1 day of 4. Currently I am doing 2 days of 5, 1 day of 4. I repeat each several times, keeping track on a calendar. When I get to a day of 5 and a day of 4, I will start increasing the days on 4. In this way, it will take me about 2-3 months to drop 1 milligram. When I get to 4 mg, I will stay on it for a month, then start going to 3. I find this works better for me then trying to go down by 1/2 mg and cutting pills.

Hi John, I was connecting with you on the ENT site and then I got the (maybe) PMR diagnosis and find you also have PMR. Think there’s any connection between the sinus and the PMR? Does the prednisone help with sinus issues? I had been interested in finding out if there’s several folks having many of same issues all at once.

When I first started this PMR journey I was on a blog in the United Kingdom, and they seem to be head and shoulders above the US in research on PMR. I was told (by a local doc) that they put more money into research and they are looking at this more closely. I'm guessing that PMR is the low man on the totem pole for research here in our country. I can understand that. Cancer and heart disease and other diseases kill people, PMR just makes our lives miserable. But way back when I was diagnosed there was even a little book out on PMR written, I believe, by someone from England. It was a patient, not an expert, but early on I got a lot of my info from that little book. Your method sound complicated, but also like you are successful at what you are doing. Somehow it would have to be documented to keep the dosages and the days straight, but it sound like a decent plan. I'll think on that since I'm having a real hard time getting off of 8 mg. When I look at your method though, I can't seem to get it. I'd have to see it written out more extensively. Math is not my forte.

I am really confused about the decision to either taper or to increase. Let’s start with tapering. Do you wait until your pain level and stiffness level is a zero before you drop to the next lower level or do you decide that you can Live with a pain and stiffness level of two and make the drop then? I guess another way of asking the question is what level of pain is acceptable? If you are at a three or four does that motivate you to increase the dosage?

Wow. that's a big question. My doc monitors me. I see him every 3 months. He's very thorough, and does an exam of my joints, hips and shoulders, and questions me about my pain level. He just presses on those ares to see what makes me wince. Questions me about how I'm feeling then he decides to have me decrease on the first day of the next month. If I remained pretty solid over that time then he does another decrease. The problem I'm having is each time now that I try to get to 7 I crash. More soreness, more pain overall. My doc is out for a medical emergency right now, and I would typically reduce by one mg. But I'm going to go to 7 1/2 and try that since I missed my appt. last week and I have 2 1/2 mg on hand.. I'll stay there if 7 1/2 works, and then I'll got to 7 the first of August, then I'll try 6 1/2, and I'll see him in Sept. If I get into too much pain he just puts me back where I was. So If I crash at 7, then he'll put me back up to 8 and I'll stabilize there. I haven't tried the 1/2 mg steps before. so I'll see how this works.

@jcffrey47, @lizzier The aim is to get to the amount that controls the pain, not to get to zero pred. 7 or 8 mgs of Prednisone takes the place of cortisol that is produced by your body. Your adrenal glands cease production when pred takes over. It is harder to lower the prednisone once you get to 7/8 mgs pred as the adrenal glands sometimes take a year to be able to produce cortisol again. Reducing by 1/2 mg gradually over a month and then staying there for a few more weeks to determine if the PMR is still there or your glands are gradually working is the next step.

I do know how it works, but it's probably softening my bones also. I don't want a broken bone.