PMR initial diagnosis: Can there be an underlying disease?

Posted by charlena @charlena, Sep 10, 2020

My husband was diagnosed with PMR several years ago and placed on prednisone. It no longer seems to help him. Just wondering, has anyone here been initially diagnosed with PMR only to be re-diagnosed with a different disease or have an underlying disease discovered? Also, does anyone feel they have been diagnosed with PMR because the doctor can't figure out what the problem is and diagnosed you with PMR because you have some of the symptoms of PMR?

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

@ohgodithurts

Hi guys!

Been to a GP many times and have an appointment with a Rheumy on Monday, but I'm hoping to get some third, fourth and fifth opinions before going on Prednisone at 31. Any input would be greatly appreciated.

I'm pretty healthy, exorcised frequently before this, and have never had any serious health issues prior to this as well. I did drink too much in my 20's but have all but stopped at this point.

I'll start with a quick walk through of the progression of my symptoms.

3.5 MONTHS AGO

I noticed rash patches had developed all over my scalp. They were causing some serious dandruff -- never had anything like this before. Was worried it might be Psoriasis, but the doc. said it's scalp eczema, which makes sense because I had eczema as a kid.

2.5 MONTHS AGO

Developed Plantir Fascitis in both feed (I'm active, not overweight, and have never had it before in my life). After some rest it went away it my right foot but I basically still can't walk on my left foot.

Started developing pain in my right index finger. Chalked it up to overuse as I work as a developer and, well, that's the finger I click the mouse with. Doc. also said that it was Tendonitis and to just lay off it for a bit. I started using a finger splint and the pain seemed to get a little better after about two weeks, but then...

2 MONTHS AGO

Started developing a tenderness in my upper vertebrae, then it started hurting when I would bend over or get up out of bed. I went to the doctor again and mentioned I use kettle-bells for working out and he said it was probably just a stress injury from that and unrelated to my finger pain/scalp rashes. He told me to lay off the weights for a bit.

Over the course of the next week or two, the pain just kept spreading and getting worse. My spine is tender from about half-way up to the neck now, it's in both of my shoulders, the front of my hip bones, my right wrist, and upper arms. Now my ribs are tender when I press on them as well. It's excruciating to roll over in bed, and takes a concerted effort to sit up and get out of be. I can also hardly put my socks on. The pain in my index finger has subsided somewhat, but I started using my middle finger for the mouse instead and then it swelled up to the size of a sausage, became incredibly painful to bend and literally impossible to bend more than half way -- I've been keeping it in a splint and icing it daily for weeks now.

TREATMENT

Two months ago, when the pain first started really spreading, the doc. gave me a Naproxen prescription and I took two 500mg/day. for a month. It seemed to help somewhat with the pain a few hours after taking it, but only about a 40-50% reduction.

After I ran out of Naproxen, the doc. said we can try and knock it out with a short course of Prednisone -- so I did a week of Prednisone at 40mg for three days and 20mg for four days.

The Prednisone completely relieved my symptoms at first, but by the last day some of the pain had come back and after I stopped it all came back with a vengeance.

Now the doctor has sent off a referral to a Rheumatologist to get a second opinion before starting me on a year+ of Prednisone (the only known effective treatment for PMR).

DIAGNOSE ME

Please, if there are any doctors out there, could you have a look at my labs and see if this diag. makes sense?

The blood work seems to indicate inflammation for sure, and there are no RF factors, but the avg. age of PMR onset is 70, with is being extremely rare in people under 50. Furthermore, the swollen fingers, Plantir Fascitis, and scalp rashes don't seem to be common symptoms of PMR.

Very keen to get any more professional opinions.

I also just had two chest X-rays and an X-ray on my right hand done, as well as a blood test for my calcium levels (in case of hypo/hyperthyroidism -- I read that's a possible differential) and some test for gout (although it's probably definitely not gout as it's all over my body) -- I've attached the X-rays diag. below and will update with the additional bloods as soon as I get them back.

BLOODS

Abnormalities:

ESR: 28mm/hr

CRP: 28mg/L

ANA Titre: 1:80, speckled pattern (doc. said this was essentially nominal)

Platelets: 447 x 10e9/L (again, doc. said this was nothing to worry about)

Full bloods and X-ray diagnosis attached.

Jump to this post

I was 44 when diagnosed. There are always outliers in the equation. My ESR and CRP where pretty near normal. I did have pain in my chest too. Every breath I took was painful. Felt like the connective tissue between my ribs was inflamed so when I breathed it caused stretching and pain.

REPLY
@ohgodithurts

Hi guys!

Been to a GP many times and have an appointment with a Rheumy on Monday, but I'm hoping to get some third, fourth and fifth opinions before going on Prednisone at 31. Any input would be greatly appreciated.

I'm pretty healthy, exorcised frequently before this, and have never had any serious health issues prior to this as well. I did drink too much in my 20's but have all but stopped at this point.

I'll start with a quick walk through of the progression of my symptoms.

3.5 MONTHS AGO

I noticed rash patches had developed all over my scalp. They were causing some serious dandruff -- never had anything like this before. Was worried it might be Psoriasis, but the doc. said it's scalp eczema, which makes sense because I had eczema as a kid.

2.5 MONTHS AGO

Developed Plantir Fascitis in both feed (I'm active, not overweight, and have never had it before in my life). After some rest it went away it my right foot but I basically still can't walk on my left foot.

Started developing pain in my right index finger. Chalked it up to overuse as I work as a developer and, well, that's the finger I click the mouse with. Doc. also said that it was Tendonitis and to just lay off it for a bit. I started using a finger splint and the pain seemed to get a little better after about two weeks, but then...

2 MONTHS AGO

Started developing a tenderness in my upper vertebrae, then it started hurting when I would bend over or get up out of bed. I went to the doctor again and mentioned I use kettle-bells for working out and he said it was probably just a stress injury from that and unrelated to my finger pain/scalp rashes. He told me to lay off the weights for a bit.

Over the course of the next week or two, the pain just kept spreading and getting worse. My spine is tender from about half-way up to the neck now, it's in both of my shoulders, the front of my hip bones, my right wrist, and upper arms. Now my ribs are tender when I press on them as well. It's excruciating to roll over in bed, and takes a concerted effort to sit up and get out of be. I can also hardly put my socks on. The pain in my index finger has subsided somewhat, but I started using my middle finger for the mouse instead and then it swelled up to the size of a sausage, became incredibly painful to bend and literally impossible to bend more than half way -- I've been keeping it in a splint and icing it daily for weeks now.

TREATMENT

Two months ago, when the pain first started really spreading, the doc. gave me a Naproxen prescription and I took two 500mg/day. for a month. It seemed to help somewhat with the pain a few hours after taking it, but only about a 40-50% reduction.

After I ran out of Naproxen, the doc. said we can try and knock it out with a short course of Prednisone -- so I did a week of Prednisone at 40mg for three days and 20mg for four days.

The Prednisone completely relieved my symptoms at first, but by the last day some of the pain had come back and after I stopped it all came back with a vengeance.

Now the doctor has sent off a referral to a Rheumatologist to get a second opinion before starting me on a year+ of Prednisone (the only known effective treatment for PMR).

DIAGNOSE ME

Please, if there are any doctors out there, could you have a look at my labs and see if this diag. makes sense?

The blood work seems to indicate inflammation for sure, and there are no RF factors, but the avg. age of PMR onset is 70, with is being extremely rare in people under 50. Furthermore, the swollen fingers, Plantir Fascitis, and scalp rashes don't seem to be common symptoms of PMR.

Very keen to get any more professional opinions.

I also just had two chest X-rays and an X-ray on my right hand done, as well as a blood test for my calcium levels (in case of hypo/hyperthyroidism -- I read that's a possible differential) and some test for gout (although it's probably definitely not gout as it's all over my body) -- I've attached the X-rays diag. below and will update with the additional bloods as soon as I get them back.

BLOODS

Abnormalities:

ESR: 28mm/hr

CRP: 28mg/L

ANA Titre: 1:80, speckled pattern (doc. said this was essentially nominal)

Platelets: 447 x 10e9/L (again, doc. said this was nothing to worry about)

Full bloods and X-ray diagnosis attached.

Jump to this post

Hello @ohgodithurts, I would like to add my welcome to Connect along with @rkndvm @ltta and others. You will notice that we moved your post to this existing discussion - PMR initial diagnosis: Can there be an underlying disease? where you can meet other members with similar questions and symptoms. I'm happy to read that your doctor has already set you up with a referral to a rheumatologist who normally deals with these types of conditions. It's good that you are asking questions and seeking information. I would recommend making a list of your symptoms and timeline similar to what you have done here and be ready to discuss them when you meet with the rheumatologist. In both my occurrences of PMR, I was questioned about the tenderness in the scalp and/or temples and head area which is an indication of giant cell arteritis (GCA) and condition that is associated with PMR in some people and much more serious.

As patients ourselves with no medical background or experience, we can only share our experience and symptoms with you. How soon is your appointment with the rheumatologist?

REPLY

I have had PMR symptoms for 9 months but just diagosed a month ago. I am 53. Started 15mg Prednisone for 1 week then 10. Seemed to be ok but never pain free then woke up one morning with significant pain in shoulder and hip girdles. Didn't even exercise the day before. Has anyone had this happen? Seems very random. I'm trying to figure out the triggers of this disease so I can avoid them!

REPLY
@hfoster

I have had PMR symptoms for 9 months but just diagosed a month ago. I am 53. Started 15mg Prednisone for 1 week then 10. Seemed to be ok but never pain free then woke up one morning with significant pain in shoulder and hip girdles. Didn't even exercise the day before. Has anyone had this happen? Seems very random. I'm trying to figure out the triggers of this disease so I can avoid them!

Jump to this post

Hi @hfoster, Welcome to Connect. I've had PMR twice and it's currently in remission. Both times I was started at 20mg prednisone which took away the pain completely. The tapering can be tricky and the goal is to listen to your body. I did have episodes of the PMR flaring back up when I tapered too fast or by too much. It took me 3-1/2 years to taper off the first time. The last six months going back and forth between 1mg and 1/2mg until I could stop taking prednisone with little to no pain. The second time it was much easier which I attribute to making some lifestyle changes - healthier eating and more exercise. Here's some information that might help:

Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Another thing that helped me a little more the second time around was that I kept a daily pain log along with the dosage amount of prednisone. My rheumatologist gave me the suggestion along with the tapering tip of listening to my body and tapering down only when the pain was under control. For me that was when my pain was less than 2 on a scale of 1 to 10. He also gave me scripts for 2.5mg and 1mg prednisone tablets to make the tapering easier.

Do you keep a daily pain log with the amount of prednisone you took that day?

REPLY
@hfoster

I have had PMR symptoms for 9 months but just diagosed a month ago. I am 53. Started 15mg Prednisone for 1 week then 10. Seemed to be ok but never pain free then woke up one morning with significant pain in shoulder and hip girdles. Didn't even exercise the day before. Has anyone had this happen? Seems very random. I'm trying to figure out the triggers of this disease so I can avoid them!

Jump to this post

Seems like your dose of Prednisone may not be enough. I started at 20 mg. in January 2022 and immediately all pain was gone. Prior to this, I was pretty much completely debilitated. I'm in the process of trying to taper now, which is a bit of a roller coaster. 12.5 mg was not good, so I upped it to 13 which seems a little better and now back down to 12.5 for a couple of weeks. I had significant pain from the neck, to the shoulders, to the upper arms, to the hands (right hand looked like a claw and required a split to keep it from curling). Hips, back of thighs and buttocks were excruciating. Could not sit on the toilet and could not do the reach around. It was horrible. Your drop in dosage seems to be too much and so the inflammation is likely building up again. Talk with your GP or Rheumatologist about increasing the dosage for awhile. It takes time for your body to settle in and we MUST listen to our bodies. Everyone is different. Cheers!

REPLY
@milld835

Seems like your dose of Prednisone may not be enough. I started at 20 mg. in January 2022 and immediately all pain was gone. Prior to this, I was pretty much completely debilitated. I'm in the process of trying to taper now, which is a bit of a roller coaster. 12.5 mg was not good, so I upped it to 13 which seems a little better and now back down to 12.5 for a couple of weeks. I had significant pain from the neck, to the shoulders, to the upper arms, to the hands (right hand looked like a claw and required a split to keep it from curling). Hips, back of thighs and buttocks were excruciating. Could not sit on the toilet and could not do the reach around. It was horrible. Your drop in dosage seems to be too much and so the inflammation is likely building up again. Talk with your GP or Rheumatologist about increasing the dosage for awhile. It takes time for your body to settle in and we MUST listen to our bodies. Everyone is different. Cheers!

Jump to this post

Thank you. I am back down to very little pain/discomfort/stiffness now - probably about a 2, which I can definitely live with. It was bad that first day then gradually got better. Took about 5 days. Wondering if that is just how PMR goes? I had been on the 10mg for about 2 weeks when I woke up hurting so badly again. Seems like the Pred was working at that level before that day then it wasn't...now it is. I am just trying to learn more about how this disease flows.

REPLY
@hfoster

Thank you. I am back down to very little pain/discomfort/stiffness now - probably about a 2, which I can definitely live with. It was bad that first day then gradually got better. Took about 5 days. Wondering if that is just how PMR goes? I had been on the 10mg for about 2 weeks when I woke up hurting so badly again. Seems like the Pred was working at that level before that day then it wasn't...now it is. I am just trying to learn more about how this disease flows.

Jump to this post

I'm not long at this, but I do find every day is different in some way...so I'm not so sure about a "flow". The Pred will make you feel all well again and then when you start to wean, you find out you are not miraculously healed. As far as the PMR goes, for myself, time will tell. Right now it's manageable, but weaning is the culprit. We're all on the same journey, maybe slightly different paths. All the best to you on yours. ~ Deb

REPLY
@hfoster

Thank you. I am back down to very little pain/discomfort/stiffness now - probably about a 2, which I can definitely live with. It was bad that first day then gradually got better. Took about 5 days. Wondering if that is just how PMR goes? I had been on the 10mg for about 2 weeks when I woke up hurting so badly again. Seems like the Pred was working at that level before that day then it wasn't...now it is. I am just trying to learn more about how this disease flows.

Jump to this post

Hi @hfoster, the proper dosage of prednisone is supposed to take care of the pain of PMR , in a way often described as miraculous. After suffering in a way similar to what @mild835 described for about a year, I started at a dosage of 12 mg but was quickly upped to 40 mg when I was found to have Giant Cell Arteritis, the evil sister of PMR. It's been a little over a year now with a couple of bumps in the road, but I'm down to 2.5 mg of prednisone. Did your doctor warn you about the symptoms of GCA? About 30% of those with PMR develop it, and untreated, it can cause blindness or stroke. I wish you the best.

REPLY

Thank you and sorry to hear about your GCA. My doctors have asked if I have the symptoms of GCA but I do not. I didn't realize such a high percentage of PMR patients get it. Did yours come on quickly?

REPLY
@ohgodithurts

Hi guys!

Been to a GP many times and have an appointment with a Rheumy on Monday, but I'm hoping to get some third, fourth and fifth opinions before going on Prednisone at 31. Any input would be greatly appreciated.

I'm pretty healthy, exorcised frequently before this, and have never had any serious health issues prior to this as well. I did drink too much in my 20's but have all but stopped at this point.

I'll start with a quick walk through of the progression of my symptoms.

3.5 MONTHS AGO

I noticed rash patches had developed all over my scalp. They were causing some serious dandruff -- never had anything like this before. Was worried it might be Psoriasis, but the doc. said it's scalp eczema, which makes sense because I had eczema as a kid.

2.5 MONTHS AGO

Developed Plantir Fascitis in both feed (I'm active, not overweight, and have never had it before in my life). After some rest it went away it my right foot but I basically still can't walk on my left foot.

Started developing pain in my right index finger. Chalked it up to overuse as I work as a developer and, well, that's the finger I click the mouse with. Doc. also said that it was Tendonitis and to just lay off it for a bit. I started using a finger splint and the pain seemed to get a little better after about two weeks, but then...

2 MONTHS AGO

Started developing a tenderness in my upper vertebrae, then it started hurting when I would bend over or get up out of bed. I went to the doctor again and mentioned I use kettle-bells for working out and he said it was probably just a stress injury from that and unrelated to my finger pain/scalp rashes. He told me to lay off the weights for a bit.

Over the course of the next week or two, the pain just kept spreading and getting worse. My spine is tender from about half-way up to the neck now, it's in both of my shoulders, the front of my hip bones, my right wrist, and upper arms. Now my ribs are tender when I press on them as well. It's excruciating to roll over in bed, and takes a concerted effort to sit up and get out of be. I can also hardly put my socks on. The pain in my index finger has subsided somewhat, but I started using my middle finger for the mouse instead and then it swelled up to the size of a sausage, became incredibly painful to bend and literally impossible to bend more than half way -- I've been keeping it in a splint and icing it daily for weeks now.

TREATMENT

Two months ago, when the pain first started really spreading, the doc. gave me a Naproxen prescription and I took two 500mg/day. for a month. It seemed to help somewhat with the pain a few hours after taking it, but only about a 40-50% reduction.

After I ran out of Naproxen, the doc. said we can try and knock it out with a short course of Prednisone -- so I did a week of Prednisone at 40mg for three days and 20mg for four days.

The Prednisone completely relieved my symptoms at first, but by the last day some of the pain had come back and after I stopped it all came back with a vengeance.

Now the doctor has sent off a referral to a Rheumatologist to get a second opinion before starting me on a year+ of Prednisone (the only known effective treatment for PMR).

DIAGNOSE ME

Please, if there are any doctors out there, could you have a look at my labs and see if this diag. makes sense?

The blood work seems to indicate inflammation for sure, and there are no RF factors, but the avg. age of PMR onset is 70, with is being extremely rare in people under 50. Furthermore, the swollen fingers, Plantir Fascitis, and scalp rashes don't seem to be common symptoms of PMR.

Very keen to get any more professional opinions.

I also just had two chest X-rays and an X-ray on my right hand done, as well as a blood test for my calcium levels (in case of hypo/hyperthyroidism -- I read that's a possible differential) and some test for gout (although it's probably definitely not gout as it's all over my body) -- I've attached the X-rays diag. below and will update with the additional bloods as soon as I get them back.

BLOODS

Abnormalities:

ESR: 28mm/hr

CRP: 28mg/L

ANA Titre: 1:80, speckled pattern (doc. said this was essentially nominal)

Platelets: 447 x 10e9/L (again, doc. said this was nothing to worry about)

Full bloods and X-ray diagnosis attached.

Jump to this post

Have you been evaluated for psoriatic arthritis?

REPLY
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