1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

kmeikle1 | @kmeikle1 | Feb 5, 2022
In reply to @jfannarbor "Yes, and I am right-hand dominent. The pain is across my shoulder girdle and pelvic girdle...." + (show)
@jfannarbor

Yes, and I am right-hand dominent. The pain is across my shoulder girdle and pelvic girdle. My pain has been classic according to the textbooks from the beginning 30 years ago.

Jump to this post

Hmm. Interesting. Can you distinguish this as PMR pain? I know I had some confustion dealing with bursitis, hip joint degenaration,and PMR. There are definitely those on healthunlocked the PMRGCA group out of the UK that have exceeded the average 5.9 years of PMR, a few 12 plus. But 30 years is definitely outside the norm. You are unique and must do your own research and advocacy. I was never an elite athlete, but for me I had to learn to listen to my body and what it was telling me. I have always been active and a "doer." I've learned to do less. I don't like that, but I'm getting used to it. Hard to fight against the limitations my body is imposing.

REPLY
jfannarbor | @jfannarbor | Feb 5, 2022

I probably had PMR pain for years before it was diagnosed. The pain is so unique and starts so fast, I now know when PMR starts within seconds. It is so specific with regards to location and soreness. I do not believe I have ever had hip bursitis, so I do not know what it feels like. I do a lot of running so I would think that hip bursitis would show up there, and it has not.

REPLY
Amanda Roe | @amandajro | Feb 6, 2022
In reply to @abbeyc "I came down with PMR December 2021. My CRP marker was 58. Primary gave me Methylprednisolone..." + (show)
@abbeyc

I came down with PMR December 2021. My CRP marker was 58. Primary gave me Methylprednisolone 6 day pack starting at 24 mg, reducing by 4mg each day. Then finally I could see Rheumatologist in January who put me on 12.5 mg of Prednisone which I took at night (my decision) because the pain was so bad at night and morning I thought this would be better. It worked pretty well (pain level 3) except I was awake ’til 2am. 
I went for second opinion with new Rheumatologist this week and he increased my dosage to 20 mg and to take it in the morning. Now I am much worse again in the morning. Pain a 7. He is perplexed.

He did answer one of my main questions though: should we be treating PMR with Prednisone so that all pain and stiffness go to a Zero? - the answer is yes - getting to zero pain/stiffness is the goal and then to taper off the meds. So we are trying to figure out the right dosage for me. I am 121 lbs. He does not seem to want to go above 20 mg Prednisone yet. My CRP levels went from 58 (no meds) to 11 to 14 and now 17.

So since I had good results with the Methylprednisolone fast 6 day pack (until I hit 12mg), we are going to try going back on that medication now. I am taking 16 mg of Methylprednisolone each morning (this equates to 20 mg Prednisone). It's only Day 2. So far I am noticing it is working better for me than Prednisone but I am still achy in the morning (a 4- 5 pain level). I go back to see him next week and he said he is going to talk to me about potentially adding Methotrexate. But I want to ask why we don’t bump it up to 24 mg of Methylprednisolone because that worked for me originally. But he’s the expert.

Is anyone else using Methylprednisolone instead of Prednisone and noticing any difference or high success? How about Methotrexate?

Jump to this post

@abbeyc you are very on top of your medications and changes... that is so great! You will notice that I moved your post into the PMR general discussion to help to get more eyes on your question around Methylprednisolone instead of Prednisone.

How are you feeling today?

REPLY
abbeyc | @abbeyc | Feb 6, 2022

Thank you! and thank you for asking. So this is my second morning after starting Methylprednisolone and I am noticing an improvement, so I am hopeful this continues. I noticed that it was faster already acting on Day 1 too.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 6, 2022
In reply to @abbeyc "I came down with PMR December 2021. My CRP marker was 58. Primary gave me Methylprednisolone..." + (show)
@abbeyc

I came down with PMR December 2021. My CRP marker was 58. Primary gave me Methylprednisolone 6 day pack starting at 24 mg, reducing by 4mg each day. Then finally I could see Rheumatologist in January who put me on 12.5 mg of Prednisone which I took at night (my decision) because the pain was so bad at night and morning I thought this would be better. It worked pretty well (pain level 3) except I was awake ’til 2am. 
I went for second opinion with new Rheumatologist this week and he increased my dosage to 20 mg and to take it in the morning. Now I am much worse again in the morning. Pain a 7. He is perplexed.

He did answer one of my main questions though: should we be treating PMR with Prednisone so that all pain and stiffness go to a Zero? - the answer is yes - getting to zero pain/stiffness is the goal and then to taper off the meds. So we are trying to figure out the right dosage for me. I am 121 lbs. He does not seem to want to go above 20 mg Prednisone yet. My CRP levels went from 58 (no meds) to 11 to 14 and now 17.

So since I had good results with the Methylprednisolone fast 6 day pack (until I hit 12mg), we are going to try going back on that medication now. I am taking 16 mg of Methylprednisolone each morning (this equates to 20 mg Prednisone). It's only Day 2. So far I am noticing it is working better for me than Prednisone but I am still achy in the morning (a 4- 5 pain level). I go back to see him next week and he said he is going to talk to me about potentially adding Methotrexate. But I want to ask why we don’t bump it up to 24 mg of Methylprednisolone because that worked for me originally. But he’s the expert.

Is anyone else using Methylprednisolone instead of Prednisone and noticing any difference or high success? How about Methotrexate?

Jump to this post

Hi @abbeyc, You will notice that we merged your discussion with an existing discussion on PMR. There is also another discussion which I think may really be helpful --- Alternative to Prednisone for Treating PMR?: https://connect.mayoclinic.org/discussion/alternative-to-prednisone/

Do you also keep a daily pain log to track your dosage and the level of pain you feel each morning?

REPLY
sashakay | @sashakay | Feb 11, 2022

I am new to the group, and appreciate all the posts I have read. I am 78 years young, this is my 3rd occurrence of PMR, each one about 10 years apart. This occurrence has lasted 1 year and now down to 4 mg (from original 10mg) I titrated off 1 mg each month. dropped to 3mg and shortly after developed Dactylitis (Sausage fingers) in both hands, but cannot take NSAIDs due to compromised kidney function. So doctor suggested I return to 4 mg and see if I responded. I suppose the reason for my post is actually more about the emotional aspect. I am not a person to identify with disease in a "victim" stance, but must admit I am deeply in a pitty pot right now! I would like to be able to have a healthier attitude around this and, as termed in holistic fields) embrace and accept and stop fighting my inner thoughts. would love feedback from others who have taken this path (I am not a meditator) but do believe in mantras and affirmations.

REPLY
2 replies
Amanda Roe | @amandajro | Feb 12, 2022
In reply to @sashakay "I am new to the group, and appreciate all the posts I have read. I am..." + (show)
@sashakay

I am new to the group, and appreciate all the posts I have read. I am 78 years young, this is my 3rd occurrence of PMR, each one about 10 years apart. This occurrence has lasted 1 year and now down to 4 mg (from original 10mg) I titrated off 1 mg each month. dropped to 3mg and shortly after developed Dactylitis (Sausage fingers) in both hands, but cannot take NSAIDs due to compromised kidney function. So doctor suggested I return to 4 mg and see if I responded. I suppose the reason for my post is actually more about the emotional aspect. I am not a person to identify with disease in a "victim" stance, but must admit I am deeply in a pitty pot right now! I would like to be able to have a healthier attitude around this and, as termed in holistic fields) embrace and accept and stop fighting my inner thoughts. would love feedback from others who have taken this path (I am not a meditator) but do believe in mantras and affirmations.

Jump to this post

Hello @sashakay and welcome to Mayo Clinic Connect. Losing confidence along a health journey is common, I would think. It is good that you are seeking community and support!

You will notice that I moved your post into an active discussion on PMR to allow for other members to join in and share their experience with you as well.

Having a healthier attitude despite your circumstances can be incredibly life altering. Have you started using mantras and affirmations such as you mentioned? If so, what changes have you noticed?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 13, 2022
In reply to @sashakay "I am new to the group, and appreciate all the posts I have read. I am..." + (show)
@sashakay

I am new to the group, and appreciate all the posts I have read. I am 78 years young, this is my 3rd occurrence of PMR, each one about 10 years apart. This occurrence has lasted 1 year and now down to 4 mg (from original 10mg) I titrated off 1 mg each month. dropped to 3mg and shortly after developed Dactylitis (Sausage fingers) in both hands, but cannot take NSAIDs due to compromised kidney function. So doctor suggested I return to 4 mg and see if I responded. I suppose the reason for my post is actually more about the emotional aspect. I am not a person to identify with disease in a "victim" stance, but must admit I am deeply in a pitty pot right now! I would like to be able to have a healthier attitude around this and, as termed in holistic fields) embrace and accept and stop fighting my inner thoughts. would love feedback from others who have taken this path (I am not a meditator) but do believe in mantras and affirmations.

Jump to this post

Hi @sashakay, I would like to add my welcome to Connect along with @amandajro and other members. I thought that you might also find the following discussion and article helpful.

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

"Chances are, your sausage fingers are caused by water retention, which can happen when you ... Surprisingly, eating too much salt can have the same effect." --- 5 Signs Your Body Wants You To Cut Back On Salt: https://www.pacificmenshealth.org/blog/5-signs-your-body-wants-you-to-cut-back-on-salt

@contentandwell post in another discussion mentions this problem with salt - https://connect.mayoclinic.org/comment/249573/

REPLY
2 replies
sashakay | @sashakay | Feb 13, 2022

THANK YOU Ethan for the welcome! Today is a good day - for me its amazing how much a shift in attitude can change the course of physical wellbeing. Today was a day of "I can do it" so went out and did weeding sat on my backside in the earth and was totally immersed in nature. When I had finished shuffling around the garden bed, I messaged my hubby in the house and asked him to help me get up as I was a wee bit stiff. My acceptance of my challenge to get up but reaching out for help was like a door opening.

REPLY
JK | @contentandwell | Feb 13, 2022
In reply to @johnbishop "Hi @sashakay, I would like to add my welcome to Connect along with @amandajro and other..." + (show)
@johnbishop

Hi @sashakay, I would like to add my welcome to Connect along with @amandajro and other members. I thought that you might also find the following discussion and article helpful.

-- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

"Chances are, your sausage fingers are caused by water retention, which can happen when you ... Surprisingly, eating too much salt can have the same effect." --- 5 Signs Your Body Wants You To Cut Back On Salt: https://www.pacificmenshealth.org/blog/5-signs-your-body-wants-you-to-cut-back-on-salt

@contentandwell post in another discussion mentions this problem with salt - https://connect.mayoclinic.org/comment/249573/

Jump to this post

That's a good article, @johnbishop. @sashakay One thing I didn't see mentioned in that article but that I have been told is that the best way to get rid of fluid retention is to drink more! From what I gather, it's sort of like breaking through the dam. It sounds counterintuitive but I have found it does help.
JK

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.