PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

@chzuck

I am being evaluated for MTX and am concerned that I will only be trading one evil for another. I was hoping getting on MTX and greatly reducing Prednisone would make the thin skin condition better. From what you say, that is not the case.

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I would say my skin has gotten better since I started the methotrexate and dropped from 8 mg prednisone to 5. I had a big purple bruise on my arm that had been there for months after I tore the skin in that spot. The bruise disappeared after I got to 5mg pred. I was using a small circular power sander last week. I turned it off and dropped it down to my side while it was still spinning and it hit my leg. I looked down expecting to see blood gushing but there were just 3 small scratches. They scabbed over and healed up within a few days. My hair, always thin but much worse with prednisone, now covers my head and I don't feel a need to wear a hat when I leave the house.

REPLY
@napapos

Chzuck,
I am currently on 5mg per day taking it in the morning. I have taken it your way, am/pm, and now I am taking 7.5 mg meloxicam in the pm to ward of night pain. My prednisone seems to wear off quickly. Maybe just me.
5 mg is not doing the trick. Will discuss next Wednesday with rheumatologist. Hope you get it worked out.
I have the same thin skin issue on my arms but I don’t believe it is caused by the prednisone. I had it long before I started prednisone for my PMR.
Blessings

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Hi @napapos, I hope you don't mind but I thought I would reply to your private message in the discussion where you posted about discussing your prednisone dosage at your upcoming appointment with the rheumatologist. I think others will be interested in your update also.

*********** Update from @napapos ***********
So now I am 4 months in since diagnosis.
On 4-27-23 doctor put me on 10 mg pred for 2 weeks, 7.5 mg for two weeks, then 5 mg for four weeks. On 6-22-23, 7.5 for two weeks, then 5 mg for four weeks. My PMR pain level was at 8 in the beginning . Within a few days pain was at 2-3/10. I am on my third taper but he want me to stay on the 5 mg for three months, no taper, side dressing with 7.5 mg meloxicam in the pm per follow up appointment on 8-30-23 . Surprisingly my pain level is stable at 1.5-2.5/10 during the day. Mornings are around 3-4/10. No more Advil. Three 650mg Tylenol three times a day. Hand stiffness is a little better but can’t hope for much with the osteoarthritis. I am using hand tension grippers daily at about 60 reps. Will let you know later if I feel they are helpful or harmful. Today, 9-1-23 was the first day of my garden activity in over two weeks. I am eating an anti inflammatory diet, lots of fish and veggies, no processed foods and little sugar. I think it helps. I just pray tomorrow is not payback time. Wishing everyone wellness and blessings.
***********************

It sounds like you are doing really good with the activity and anti-inflammatory diet. Eliminating most of my sugar intake was really helpful for me as well. Did I read correctly that you are taking nine 650mg Tylenol a day (three 650mg capsules three times a day)?
That adds up to 5850mg daily dose which is much higher than recommended unless you have discussed it with your doctor.

Here is some information on the topic:
"Tylenol is relatively safe when you take the recommended dose. In general, adults can take between 650 milligrams (mg) and 1,000 mg of acetaminophen every 4 to 6 hours. The FDA recommends that an adult shouldn't take more than 3,000 mg of acetaminophen per day unless directed otherwise by their healthcare professional."
--- Is It Dangerous to Take Too Much Tylenol?
https://www.healthline.com/health/can-tylenol-kill-you

I only took Tylenol once in awhile when my PMR was active and mostly for headaches. Have you discussed your Tylenol use with your doctor or rheumatologist?

REPLY
@johnbishop

Hi @napapos, I hope you don't mind but I thought I would reply to your private message in the discussion where you posted about discussing your prednisone dosage at your upcoming appointment with the rheumatologist. I think others will be interested in your update also.

*********** Update from @napapos ***********
So now I am 4 months in since diagnosis.
On 4-27-23 doctor put me on 10 mg pred for 2 weeks, 7.5 mg for two weeks, then 5 mg for four weeks. On 6-22-23, 7.5 for two weeks, then 5 mg for four weeks. My PMR pain level was at 8 in the beginning . Within a few days pain was at 2-3/10. I am on my third taper but he want me to stay on the 5 mg for three months, no taper, side dressing with 7.5 mg meloxicam in the pm per follow up appointment on 8-30-23 . Surprisingly my pain level is stable at 1.5-2.5/10 during the day. Mornings are around 3-4/10. No more Advil. Three 650mg Tylenol three times a day. Hand stiffness is a little better but can’t hope for much with the osteoarthritis. I am using hand tension grippers daily at about 60 reps. Will let you know later if I feel they are helpful or harmful. Today, 9-1-23 was the first day of my garden activity in over two weeks. I am eating an anti inflammatory diet, lots of fish and veggies, no processed foods and little sugar. I think it helps. I just pray tomorrow is not payback time. Wishing everyone wellness and blessings.
***********************

It sounds like you are doing really good with the activity and anti-inflammatory diet. Eliminating most of my sugar intake was really helpful for me as well. Did I read correctly that you are taking nine 650mg Tylenol a day (three 650mg capsules three times a day)?
That adds up to 5850mg daily dose which is much higher than recommended unless you have discussed it with your doctor.

Here is some information on the topic:
"Tylenol is relatively safe when you take the recommended dose. In general, adults can take between 650 milligrams (mg) and 1,000 mg of acetaminophen every 4 to 6 hours. The FDA recommends that an adult shouldn't take more than 3,000 mg of acetaminophen per day unless directed otherwise by their healthcare professional."
--- Is It Dangerous to Take Too Much Tylenol?
https://www.healthline.com/health/can-tylenol-kill-you

I only took Tylenol once in awhile when my PMR was active and mostly for headaches. Have you discussed your Tylenol use with your doctor or rheumatologist?

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@johnbishop
No problem sharing my post. I’m slow. Not sure how to post open messages.
And no , I am only taking three, 650 mg Tylenol per day!
Blessings.

REPLY
@napapos

@johnbishop
No problem sharing my post. I’m slow. Not sure how to post open messages.
And no , I am only taking three, 650 mg Tylenol per day!
Blessings.

Jump to this post

Hi @napapos, Glad to hear it's just three 650 mg Tylenol per day. Right now I am posting a reply to your post. I started by clicking on the VIEW & REPLY button on the email notification I received from your post which took me here to your post. Then I clicked the Reply button under your post which opened this box (photo attached). If I want to write a post to everyone, I just have to go to the bottom of the discussion and type my message in the Comment box and then click the Post Comment button at the bottom. You can find more helpful step by step instructions in the Help Center here - https://connect.mayoclinic.org/help-center/. There is a link to the Help Center at the top menu at the right side. Hope this helps.

REPLY
@johnbishop

Hi @chzuck, I've had two occurrences of PMR. Starting at 20mg prednisone for both. I always took my dose when I got up in the morning per my rheumatologist. I also only tapered when my pain level was acceptable (less than 2 on my scale of 0 to 10). The first time it took 3 and a half years to taper off, the second time six years later took 1 and a half years to taper off. I am also still dealing with thin skin even though my PMR has been in remission for over 5 years now.

What helped me the second time around was changing my lifestyle - eating healthier and exercising more. Probably the biggest factor was eliminating as much processed food and sugar as possible. Do you keep a daily log to record your level of pain in the morning and the dose of prednisone?

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John - did you (or anyone else here) go gluten-free? What about alcohol?

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@trimomlewis

John - did you (or anyone else here) go gluten-free? What about alcohol?

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No to the gluten free but have gone alcohol free. I’ve tried gluten free for a week or so but not when my PMR was active.

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@kmeikle1

Glad your taper has worked well for you so far. If you have trouble tapering from 10 mgs. be advised most recommend not tapering more than 10% at a time, so a 1 mg. reduction from 10. I, too, had little trouble getting to 10, but I've had plenty of trouble trying to get below 10. I continue to try and my next taper will be half a mg. to 9.5.

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I was on 20mg for 2 months and because that was working pretty well, my rheumatologist had me taper to 15. After 3 days, the pain increased so she told me to up it to 17.5. I was on that for a little over 2 weeks and 2 days ago went back down to 15. Pain has increased, but I am going to try and stick with the 15 for a full week and see how I am doing. It is easy for me to overdo exercising so I am sticking with swimming and pool yoga before I make a decision to go back down to 15 to make sure I am not doing too much. Walking is good and I do 20-25 minutes of various stretching in the morning so I am able to stand straight and walk.

REPLY
@johnbishop

Hi @napapos, Glad to hear it's just three 650 mg Tylenol per day. Right now I am posting a reply to your post. I started by clicking on the VIEW & REPLY button on the email notification I received from your post which took me here to your post. Then I clicked the Reply button under your post which opened this box (photo attached). If I want to write a post to everyone, I just have to go to the bottom of the discussion and type my message in the Comment box and then click the Post Comment button at the bottom. You can find more helpful step by step instructions in the Help Center here - https://connect.mayoclinic.org/help-center/. There is a link to the Help Center at the top menu at the right side. Hope this helps.

Jump to this post

Does the tylenol keep you from taking prednisone? I was taking mobic for the pain and had to stop that once I started with prednisone. I do take tylenol once in awhile in addition to the prednisone.

REPLY
@johnbishop

Hi @napapos, I hope you don't mind but I thought I would reply to your private message in the discussion where you posted about discussing your prednisone dosage at your upcoming appointment with the rheumatologist. I think others will be interested in your update also.

*********** Update from @napapos ***********
So now I am 4 months in since diagnosis.
On 4-27-23 doctor put me on 10 mg pred for 2 weeks, 7.5 mg for two weeks, then 5 mg for four weeks. On 6-22-23, 7.5 for two weeks, then 5 mg for four weeks. My PMR pain level was at 8 in the beginning . Within a few days pain was at 2-3/10. I am on my third taper but he want me to stay on the 5 mg for three months, no taper, side dressing with 7.5 mg meloxicam in the pm per follow up appointment on 8-30-23 . Surprisingly my pain level is stable at 1.5-2.5/10 during the day. Mornings are around 3-4/10. No more Advil. Three 650mg Tylenol three times a day. Hand stiffness is a little better but can’t hope for much with the osteoarthritis. I am using hand tension grippers daily at about 60 reps. Will let you know later if I feel they are helpful or harmful. Today, 9-1-23 was the first day of my garden activity in over two weeks. I am eating an anti inflammatory diet, lots of fish and veggies, no processed foods and little sugar. I think it helps. I just pray tomorrow is not payback time. Wishing everyone wellness and blessings.
***********************

It sounds like you are doing really good with the activity and anti-inflammatory diet. Eliminating most of my sugar intake was really helpful for me as well. Did I read correctly that you are taking nine 650mg Tylenol a day (three 650mg capsules three times a day)?
That adds up to 5850mg daily dose which is much higher than recommended unless you have discussed it with your doctor.

Here is some information on the topic:
"Tylenol is relatively safe when you take the recommended dose. In general, adults can take between 650 milligrams (mg) and 1,000 mg of acetaminophen every 4 to 6 hours. The FDA recommends that an adult shouldn't take more than 3,000 mg of acetaminophen per day unless directed otherwise by their healthcare professional."
--- Is It Dangerous to Take Too Much Tylenol?
https://www.healthline.com/health/can-tylenol-kill-you

I only took Tylenol once in awhile when my PMR was active and mostly for headaches. Have you discussed your Tylenol use with your doctor or rheumatologist?

Jump to this post

It is interesting that your doctor had you take meloxicam with your prednisone because mine told me to stop taking it. It seems there is a wide variation of treatments with different opinions on what you can take with what. I was taking meloxicam for my RA and osteoarthritis so would love to be able to take that and reduce my prednisone. Has anyone else done both? I will reach out to my doctor and see what she says. Thanks for the info and for sharing your post!
Kathy

REPLY
@sunshine4u

Does the tylenol keep you from taking prednisone? I was taking mobic for the pain and had to stop that once I started with prednisone. I do take tylenol once in awhile in addition to the prednisone.

Jump to this post

I’m pretty sure Tylenol is safe to use when you’re taking prednisone as long as you don’t take too much.

"Tylenol is relatively safe when you take the recommended dose. In general, adults can take between 650 milligrams (mg) and 1,000 mg of acetaminophen every 4 to 6 hours. The FDA recommends that an adult shouldn't take more than 3,000 mg of acetaminophen per day unless directed otherwise by their healthcare professional."
— Is It Dangerous to Take Too Much Tylenol?
https://www.healthline.com/health/can-tylenol-kill-you

REPLY
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