PMR and tapering -- will blood work change?

Posted by John, Volunteer Mentor @johnbishop, May 8, 2018

I received a private message from @alanbruce that I think a lot of you may be interested in or thinking about. Alan said it was OK so I thought it might be a good idea to start a new discussion.

Alan's question -- I started out on Prednisone last August on 20s and I am now 4s. Just had blood work done and from a month ago SED rate is now 4 and it was 3 and CRP is now .5 and it was .3. Both in normal range. Do you normally see these reading go up when Prednisone rate goes down. How will I know if I can continue to decrease prednisone? will there be significant discomfort and or Higher test number possibly above the normal range as taper down. Can different labs give different results.

My response -- Hi Alan, You ask a really good question. I'm have no medical training or background but can share my experience with you. Would you mind if I answer your question in the discussion? I think it's a good question and others may be struggling with the same question.

I think the SED rate is just an indicator of inflammation which is what the prednisone treats. The kicker is that each of us and our tolerances are different. When my PMR came out of remission back in June/July of 2016 and I went to the doctor, he ordered a SED rate test and mine came back at 16 (normal for men being 0 to 22) and confirmed the PMR was back. I started back on 20 mg prednisone and tapered off at a rate of up to 5 mg a week once I was feeling better and most of the pain was gone. When I got to 10 mg I changed to tapering by 2.5 mg a week until I felt OK at 5 mg. From 5 mg to off I switched to 1 mg tablets and went down 1 or 2 mg a week. I can tell you there was a lot of setbacks and going back to the previous dose for a few days and then going back down. I was able to stop taking prednisone on the last day of February 2018. I still have some stiffness in my hands and shoulders mostly in the mornings which I try to control with some stretching exercise and 30 minutes or so on my recumbent exercise bike. I had a SED rate test Jan 1, 2018 and it was at 1. That was about 2 months before I stopped taking prednisone.

Alan -- I am glad to have you share my question and your answer. A couple more questions .

1. at point did you know it was time to go back on or a higher amount of Prednisone?

2. How was the doctor to know that the PMR was back as I assume there is no test for PMR, I was also told that I had PMR and the Prednisone eliminated all of the pain but I always wondered how the doc knew PMR was my issue .

3. since it takes so long to see the Doc at what point in time did you think it was back?

4. Is the 20 mg and the tapering process you went thru a standard process. I have been on the Mayo's tapering protocol and now on 4 mg and started having some morning stiffness in both shoulders. Stretching, hot shower or a spa when available totally frees it up. Do you take any over the counter pain med such as Tylenol. I have a torn rotator cuff in one arm and thought to stiffness in that arm was the explanation. I am suppose to go to 3s in two weeks and I know wonder if I should stay on 4 longer or what. It seems as though there is no standard answer. I see the Doc at the end of May and I will see what they say.

Thank you Alan for questions that I know most of us with PMR have asked or thought about. I will give you my experience to the last 4 questions in the first post below. I'm hoping other members will share their experience in relation to your last 4 questions and offer suggestions for what worked for them.

John

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@zaa

I read prednisone can increase risks of cataracts so concerned since eye dr. already mentioned they are forming. I’ll have to mention pressure as well. I visited my GP and he put in Urgent Referral to see rheumatologist but they still put me 3 weeks out so 1 more week to go unless someone cancels and praying for that to happen. I’m hoping I don’t have Giant Cell which goes hand in hand with PMR. Is your scalp tender when you have symptoms? With your 3 bouts, have you noticed that it’s triggered by anything like stress or over doing exercise or seasonal changes or something else? I’ve been fighting off multiple issues last 4 months and wonder if it all stems from immunity system not functioning properly. Do you also have other issues like sinusitis, ear/tinnitus &deafness, or another?

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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

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@virginiaj

I am on my 3rd bout of PMR. I had my first bout in my 50’s and, after a long bout of stiffness and pain, prednisone literally gave me overnight relief. It took 2 years to get off prednisone and I had a 12 year remission. I am now 74 and on my 3rd bout, currently reducing from 5 to 4 mg pred, taking it slow. I had a little uptake of pred with the vaccine, but felt like it meant the vaccine was working. I am on no special diet, but am a pretty healthy eater. I walk an hour a day and am active. The only precaution from my 1st rheumatologist was to avoid weights due to risk of tendinitis. Side-effect of pred was rising pressures in my eyes and I get that checked every 6 months. Prednisone reduction for me goes quickly until 7 mg, then I take it very slow. 3rd bout started about 1 1/2 years ago and I suspect I will be at least a year before I totally get off prednisone (if ever). It is a bit of a mysterious disease and seems to effect people differently. I do split my prednisone dose as it seems to give me better coverage. Sorry you have to wait a week before seeing rheumatologist.

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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?

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@legendts

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?

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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.

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@johnbishop

@zaa - You might find the following discussion helpful.

Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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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.

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@virginiaj

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.

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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.

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@johnbishop

Hi @alanbruce -- thanks for starting this discussion. I want to reiterate that I have no medical background or training and I'm only sharing my experiences with my two occurrences of polymyalgia rheumatica (PMR).

1. During time tapering off of prednisone how did I know it was time to go back on a higher dose of prednisone -- I went back to the previous dose if the pain and stiffness was too much. This was subjective for me as I wanted to get off of prednisone and was willing to live with some minor pain.

2. How did the doctor know that the PMR was back - the second occurrence I told the doctor the PMR was back. I don't think it's something you forget after the first episode. The doctor order some blood tests to check the SED rate and C-reactive protein which are indicators according to Mayo Clinics Polymyalgia rheumatica - Diagnosis & Treatment:
-- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

3. At what point did I think it was back - It seemed to show up rather quickly the second time. I started having trouble with my arms falling asleep at night since I'm a side sleeper. Then I would be in a little more pain in the mornings when I woke up and my shoulders and hands seemed stiffer. After a few days I was pretty sure the PMR was back and setup an appointment for a checkup. It did take me a week or so to get a doctors appointment to follow up.

4. Standard tapering process for prednisone - this is the 64 thousand dollar question. For my first occurance, my rheumatologist gave me a tapering schedule and I think it was tapering weekly starting with 5 mg reduction but he also told me it depends on how I feel when the dosage was reduced. I remember staying on 15 and 10 mg for multiple weeks and longer when I got to 5 mg. I think it's an individual thing and tapering schedules should be discussed with your doctor. I found some handy tapering calendars you can print off here:
-- https://rheuminfo.com/physician-tools/prednisone-tapering-calendar/

I would like to tag other members who have posted about PMR to get their thoughts. @sherw @Robert43DAP @kiltlady @selrahc @sallyann @cyndee @nancestl @charlena @jchatchett @rolandhp and others -- can you share your thoughts and experiences for Alan's questions?

John

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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?

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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.

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@lizzier

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.

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@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.

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

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