Confused about PMR symptoms

Posted by sriecke0819 @sriecke0819, Nov 3, 2023

I was diagnosed with PMR in August by a rheumatologist. I was placed on 60mg
Prednisone. Began tapering and now I am down to 15mg when the symptoms are returning. He wanted me to drop down to 12.5 which I tried for 3 weeks but it was not without constant pain and stiffness. Then was told to go to 10. I did that for a couple days and wham! I was terrible. I couldn’t get out of bed, hard time doing anything. Then the second day new symptoms appeared. Pain in my 2 replaced knees, and extreme pain and swelling in both hands and wrists. I even had slight jaw pain. I also had the terrible shoulder, neck and hip pain. Went to the PA in my rheumatologist today and she told me that hand and wrist pain is not a symptom is PMR and it must be something else. I did have blood work yesterday when I called for the appointment and she said my levels were not bad. So she said to stay at 15 for 1 week and start the decreasing again. I am fearful to decrease again because I don’t want to go thru that again. It was awful!! It was like the 4 months prior to being diagnosed. Just wondering if any of you have experienced awful wrist and hand pain during a flare up? I am 62 year old female and my 60 year old brother also has PMR and has been on steroids for 2 years and is on 5 per day

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

I can say my hands were involved when PMR was active. I would wake up in the morning and open and close my hands. How stiff and sore my hands were predicted if it was going to be a good day or a bad day. I would tell this to my rheumatologist and she said it "comes with the territory." I was never sure if she meant PMR territory or the territory of inflammatory arthritis.

I found the following that suggests the hands can be involved in PMR:
https://rheumatology.org/patients/polymyalgia-rheumatica
"What Are the Signs/Symptoms?
The most common symptoms of polymyalgia rheumatica are widespread aching and stiff muscles. Symptoms can come on quickly, even overnight. Usually, you feel aches on both sides of your body. It may be hard to raise your arms over your shoulders. Hands and wrists may ache too. PMR aches may be worse in the morning and get better as the day goes by. Being inactive for a long time, like on a long car ride, may make stiffness worse. Stiffness and aches can be so severe that they cause people to have signs like:
Disturbed sleep
Trouble getting dressed, such as putting on socks
Problems getting in and out of a car or up from a sofa"

REPLY

My hands and wrists were really bad with PMR before starting on prednisolone. Couldn't open doors, lift the kettle, couldn't push blankets aside to get out of bed. You're definitely not alone with that symptom.

Do you have 1mg or 2mg tablets to make smaller reductions? Making 5mg or even 2.5mg reductions once you're down to 15mg is way too much for most people and would bring on a return of pain. Slowly slowly does it from now on. Can you ask your doctor for smaller dose tablets?

REPLY
@megz

My hands and wrists were really bad with PMR before starting on prednisolone. Couldn't open doors, lift the kettle, couldn't push blankets aside to get out of bed. You're definitely not alone with that symptom.

Do you have 1mg or 2mg tablets to make smaller reductions? Making 5mg or even 2.5mg reductions once you're down to 15mg is way too much for most people and would bring on a return of pain. Slowly slowly does it from now on. Can you ask your doctor for smaller dose tablets?

Jump to this post

I definitely think you are right. Slow and steady. I will ask for the 1. I thank you for your advice

REPLY
@dadcue

I can say my hands were involved when PMR was active. I would wake up in the morning and open and close my hands. How stiff and sore my hands were predicted if it was going to be a good day or a bad day. I would tell this to my rheumatologist and she said it "comes with the territory." I was never sure if she meant PMR territory or the territory of inflammatory arthritis.

I found the following that suggests the hands can be involved in PMR:
https://rheumatology.org/patients/polymyalgia-rheumatica
"What Are the Signs/Symptoms?
The most common symptoms of polymyalgia rheumatica are widespread aching and stiff muscles. Symptoms can come on quickly, even overnight. Usually, you feel aches on both sides of your body. It may be hard to raise your arms over your shoulders. Hands and wrists may ache too. PMR aches may be worse in the morning and get better as the day goes by. Being inactive for a long time, like on a long car ride, may make stiffness worse. Stiffness and aches can be so severe that they cause people to have signs like:
Disturbed sleep
Trouble getting dressed, such as putting on socks
Problems getting in and out of a car or up from a sofa"

Jump to this post

Thank you. It makes me feel better. When she said hand or wrist pain is not a part of PMR. I felt like she didn’t believe me or dismissed that symptom. I could not move them, it was a definite 8 on the pain scale and that was not moving them. I am now reassured it is the PMR. Thank you

REPLY

Hello.
I remember having all the same symptoms. I was diagnosed Feb. of this year. Started at 20mg and had to stay there for two months. Then 15mg for another month f/w 10mg for the next month. The following months were weaned by 1mg/month. Flare up in September took me up to 15mg for ten days then back to 10 mg where I'm at right now. What I just described was the only way my pain could be kept to a tolerable minimum with mostly pain free days.
The main thing that I wanted to mention is that it seems to me, and others have mentioned this as well, that our prednisone can be weaned too quickly. I Think this should be a topic of discussion with our doctor visits. I have several questions and concerns that I'll be bringing up. I'm 71 now and reasonably used to normal arthritic, age related changes. I seem to be getting into a balance knowing where the boundaries are for potential flare up. My worst enemy is getting too cold and staying there too long. As patients I believe we can have more control and collaboration with the recommended care plan. This web site along with reading articles on PMR have definitely helped me see how important patient education is.
I'll also be asking my doctor if I can stay on 10mg thru winter and the continue the 1mg/month weaning plan. I was down to 5mg when I had the flare up from rapid change to cold weather. And one more thing, I would like more control over is when I can't be in contact with my doc in a timely manner that I can be able to make certain decisions about the next step with my prednisone because it could prevent
extended periods of increased pain.
Wish you the best.

REPLY

I agree 100%. Thanks for your imput!!

REPLY

Wrist and finger pain and stiffness were the last symptoms to disappear on my journey to PMR remission. Your PA is just not up to speed on that issue.

REPLY
@lungranger77

Hello.
I remember having all the same symptoms. I was diagnosed Feb. of this year. Started at 20mg and had to stay there for two months. Then 15mg for another month f/w 10mg for the next month. The following months were weaned by 1mg/month. Flare up in September took me up to 15mg for ten days then back to 10 mg where I'm at right now. What I just described was the only way my pain could be kept to a tolerable minimum with mostly pain free days.
The main thing that I wanted to mention is that it seems to me, and others have mentioned this as well, that our prednisone can be weaned too quickly. I Think this should be a topic of discussion with our doctor visits. I have several questions and concerns that I'll be bringing up. I'm 71 now and reasonably used to normal arthritic, age related changes. I seem to be getting into a balance knowing where the boundaries are for potential flare up. My worst enemy is getting too cold and staying there too long. As patients I believe we can have more control and collaboration with the recommended care plan. This web site along with reading articles on PMR have definitely helped me see how important patient education is.
I'll also be asking my doctor if I can stay on 10mg thru winter and the continue the 1mg/month weaning plan. I was down to 5mg when I had the flare up from rapid change to cold weather. And one more thing, I would like more control over is when I can't be in contact with my doc in a timely manner that I can be able to make certain decisions about the next step with my prednisone because it could prevent
extended periods of increased pain.
Wish you the best.

Jump to this post

I have been on a PMR journey for almost 1 1/2 years. I like (and consult) this Mayo Clinic site. Another site that has been helpful is healthunlocked.com/PMRGCAuk — a British site with a lot of members who have or had PMR and GCA. The main posters on that site are NOT doctors, so their suggestions are not medical advice, but they are experienced about PMR. They advocate a slow taper of prednisone. A rule of thumb often mentioned is not to taper more than 10% of your current dose. So, for 15 mg, the maximum taper would be 1.5 mg, and you might spend 3-4 weeks there before lowering again. I am not trying to give medical advice, but this approach has worked well for me so far. Everyone’s PMR journey is a little different. I wish you the best on yours.

REPLY
@sriecke0819

Thank you. It makes me feel better. When she said hand or wrist pain is not a part of PMR. I felt like she didn’t believe me or dismissed that symptom. I could not move them, it was a definite 8 on the pain scale and that was not moving them. I am now reassured it is the PMR. Thank you

Jump to this post

Hi @sriecke0819, Before being diagnosed with GCA, I had widespread pain and stiffness throughout my entire body, from the neck down, including hands and wrists.

REPLY
@art43

Wrist and finger pain and stiffness were the last symptoms to disappear on my journey to PMR remission. Your PA is just not up to speed on that issue.

Jump to this post

Same here art43. Almost off prednisone. Occasional stiffness in index finger is the last symptom to go.

REPLY
Please sign in or register to post a reply.