@dadcue ,@cgm
You know already that we are in that same boat, unfortunately.
I was diagnosed with reactive arthritis in my early twenties. Like you I was treated with a fast taper of prednisone. They also had me on Indocin and aspirin, cause in those days they did not have the biologics and medications they have now. I also had lots of physical therapy because I was a young mom and they were afraid my joints would stiffen up. I was lucky and all my joint issues cleared up and I was finally able to return to work a year later. And then I went into remission for 20 years! I also have osteoarthritis in my hands with a couple of nodes in my fingers.
PMR did not appear until I was 72( I just turned 75) and this is very different. I’m in my 2nd flare right now and my doctor wants me to take Actemra so hopefully I can get off the prednisone. I’m on 7.5 mg currently.
Can I ask you how long you were on prednisone for your PMR? I was recently diagnosed with PMR and they stored at me at a very low dose of prednisone being 4 mg. It has worked for me and relieved my pain almost instantly. I went to my rheumatologist last week after being on 4 mg for three months and I asked if I could have it lowered and they lowered it to 2 mg. So far so good, I don’t feel any pain with the 2 mg but it’s only been three days since they lowered it. I was just wondering how long before your PMR went into remission? Like I said, I’ve only been on prednisone for three months, but I think that I had PMR for at least 3 to 4 months before I start the prednisone. Could it be that my PMR is already going into it remission in less than a year? I haven’t seen any one talk about their PMR going into remission that fast.
Can I ask you how long you were on prednisone for your PMR? I was recently diagnosed with PMR and they stored at me at a very low dose of prednisone being 4 mg. It has worked for me and relieved my pain almost instantly. I went to my rheumatologist last week after being on 4 mg for three months and I asked if I could have it lowered and they lowered it to 2 mg. So far so good, I don’t feel any pain with the 2 mg but it’s only been three days since they lowered it. I was just wondering how long before your PMR went into remission? Like I said, I’ve only been on prednisone for three months, but I think that I had PMR for at least 3 to 4 months before I start the prednisone. Could it be that my PMR is already going into it remission in less than a year? I haven’t seen any one talk about their PMR going into remission that fast.
Hello! I was on prednisone for several years. I was weaned off for about the last 6-9 months but am having an exacerbation. Ugh. Am actually scheduling a Mayo Clinic apt.
Hello! I was on prednisone for several years. I was weaned off for about the last 6-9 months but am having an exacerbation. Ugh. Am actually scheduling a Mayo Clinic apt.
Oh I’m sorry to hear that.
What dose prednisone did you start on and for how long?
This is all new to me. My inflammation came down immediately on the 4 mg, I’m wondering if that’s rare and if I actually have PMR. Everything I read says that people start on such a high dose. I guess I’m lucky that I was controlled at such a low dose. I hate the fact of being on this medication, but I don’t like the symptoms when I’m not on it. Thank you for your time.
I hope you find some good results when you go to the clinic
My PMR is in remission but I've always worried a little about RA since I do have degenerative arthritis and carpal tunnel in my hands. As a teenager I remember my mother struggling with RA which seemed to bother her hands the worse. I have often thought she might have had PMR that wasn't diagnosed prior to her RA. I thought you might want to scan through the other discussions and comments by members who have commented about PMR and RA. Here's a list of the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=PMR%20+RA
You mentioned earlier that you are not taking anything for pain but were thinking about trying LDN. Do you mind sharing how long ago you were diagnosed with PMR?
Johnbishop
I was just wondering if you could tell me how long it took for your PMR to go into remission? I’m three months in and I feel like I have a mild case because I started it on a very low dose of prednisone being 4 mg and my pain and stiffness completely went away the next day after starting The medication. I don’t want to rush it, but I also don’t want
to be on prednisone for an extended period of time.
I was told that it could take up to two years, but I feel like mine is such a mild case that maybe it won’t take that long. So I was just wondering how long it took for yours to go into remission and how you did with the tapering down of your prednisone
Johnbishop
I was just wondering if you could tell me how long it took for your PMR to go into remission? I’m three months in and I feel like I have a mild case because I started it on a very low dose of prednisone being 4 mg and my pain and stiffness completely went away the next day after starting The medication. I don’t want to rush it, but I also don’t want
to be on prednisone for an extended period of time.
I was told that it could take up to two years, but I feel like mine is such a mild case that maybe it won’t take that long. So I was just wondering how long it took for yours to go into remission and how you did with the tapering down of your prednisone
@mimi1204, The first time my PMR was diagnosed I was started on 20 mg prednisone which provided relief from the pain within an hour or so of my morning dose. It took me 3 and half years to taper off of prednisone with the last six months going back and forth between 1 mg and 1/2 mg (split 1 mg tablets) until I was finally able to stop taking prednisone and only had an acceptable amount of morning pain/discomfort (less than 2 on my personal scale of 0 to 10) which went away after being up and moving around for a bit.
I stayed in remission for about six years and then the PMR came back and again I was started on 20 mg prednisone. This time I had a better handle on managing symptoms, eating healthier with less inflammatory foods and sugar. I was able to taper off of prednisone in about 1 and a half years. So far my PMR has been in remission and it's been almost 7 years.
Oh I’m sorry to hear that.
What dose prednisone did you start on and for how long?
This is all new to me. My inflammation came down immediately on the 4 mg, I’m wondering if that’s rare and if I actually have PMR. Everything I read says that people start on such a high dose. I guess I’m lucky that I was controlled at such a low dose. I hate the fact of being on this medication, but I don’t like the symptoms when I’m not on it. Thank you for your time.
I hope you find some good results when you go to the clinic
Hi, Mimi, I’ve also been well controlled on a low dose of prednisone. I managed my pain for almost nine months on NSAIDs, but finally started on 5 mg of prednisone when the long term NSAIDs were causing their own problems. Weaned down to 2 mg, but bumped back up to 5mg when I started getting vague, minor headaches out of an abundance of caution. That dose cleared up the headaches and I’m weaning down again. I’ve found I’m very sensitive to most meds, so having the low dose prednisone be very effective is not a surprise.
@mimi1204, The first time my PMR was diagnosed I was started on 20 mg prednisone which provided relief from the pain within an hour or so of my morning dose. It took me 3 and half years to taper off of prednisone with the last six months going back and forth between 1 mg and 1/2 mg (split 1 mg tablets) until I was finally able to stop taking prednisone and only had an acceptable amount of morning pain/discomfort (less than 2 on my personal scale of 0 to 10) which went away after being up and moving around for a bit.
I stayed in remission for about six years and then the PMR came back and again I was started on 20 mg prednisone. This time I had a better handle on managing symptoms, eating healthier with less inflammatory foods and sugar. I was able to taper off of prednisone in about 1 and a half years. So far my PMR has been in remission and it's been almost 7 years.
I have just been told that I was very likely misdiagnosed 14 months ago by my original rheumatologist. I am seeing a new one who thinks I have late-onset rheumatoid arthritis, which is somewhat different than the early onset type. It has a sudden onset, like PMR, and affects larger joints, such as shoulders and knees, also like PMR. I was sero-negative for RA originally, but now a much more sensitive set of blood markers has become available. It is called “anti-CAR-P” and one of my values (anti CAR-Pab) is high, indicating early stage RA. Also, I had an ultrasound of my shoulders, which revealed areas of bone erosion, which is not usually found in PMR but is indicative of RA. All this info was provided by my pcp, but I see my regular rheumatologist on Monday.
I have just been told that I was very likely misdiagnosed 14 months ago by my original rheumatologist. I am seeing a new one who thinks I have late-onset rheumatoid arthritis, which is somewhat different than the early onset type. It has a sudden onset, like PMR, and affects larger joints, such as shoulders and knees, also like PMR. I was sero-negative for RA originally, but now a much more sensitive set of blood markers has become available. It is called “anti-CAR-P” and one of my values (anti CAR-Pab) is high, indicating early stage RA. Also, I had an ultrasound of my shoulders, which revealed areas of bone erosion, which is not usually found in PMR but is indicative of RA. All this info was provided by my pcp, but I see my regular rheumatologist on Monday.
Many autoimmune disorders "overlap" with PMR. As unfair as it sounds, people can have more than one autoimmune condition. I have PMR in addition to several other conditions.
RA and late onset RA (LORA) are just one type of inflammatory arthritis. There is a whole family of another type of inflammatory arthritis called the spondyloarthritis family. https://www.arthritis.org/diseases/spondyloarthritis
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There are many conditions both autoimmune and non-autoimmune that can mimic PMR. Many of these conditions respond rapidly to prednisone but only the symptoms respond. Depending on the condition, prednisone might not be the best treatment. See Table 1 in the link below. https://www.ccjm.org/content/87/9/549
Many autoimmune disorders "overlap" with PMR. As unfair as it sounds, people can have more than one autoimmune condition. I have PMR in addition to several other conditions.
RA and late onset RA (LORA) are just one type of inflammatory arthritis. There is a whole family of another type of inflammatory arthritis called the spondyloarthritis family. https://www.arthritis.org/diseases/spondyloarthritis
----------------------
There are many conditions both autoimmune and non-autoimmune that can mimic PMR. Many of these conditions respond rapidly to prednisone but only the symptoms respond. Depending on the condition, prednisone might not be the best treatment. See Table 1 in the link below. https://www.ccjm.org/content/87/9/549
Thanks @dadcue for sharing these articles, both of which shed some light on my situation. I don’t think I fit the criteria for any of the spondyloarthritis conditions, but I will ask my doctor. I do have extensive lower back issues, but the neurosurgeon I saw says they are all due to osteoarthritis. When I got an X-ray of my sacroiliac joints and it was normal, my rheumatologist at the time ruled out ankylosing spondylitis. So currently my diagnosis is “inflammatory arthritis”. We’ll see if that gets more specific as time goes by, but I guess the important thing is that they are all treated with similar drugs, none of which involve long-term prednisone.
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Can I ask you how long you were on prednisone for your PMR? I was recently diagnosed with PMR and they stored at me at a very low dose of prednisone being 4 mg. It has worked for me and relieved my pain almost instantly. I went to my rheumatologist last week after being on 4 mg for three months and I asked if I could have it lowered and they lowered it to 2 mg. So far so good, I don’t feel any pain with the 2 mg but it’s only been three days since they lowered it. I was just wondering how long before your PMR went into remission? Like I said, I’ve only been on prednisone for three months, but I think that I had PMR for at least 3 to 4 months before I start the prednisone. Could it be that my PMR is already going into it remission in less than a year? I haven’t seen any one talk about their PMR going into remission that fast.
Hello! I was on prednisone for several years. I was weaned off for about the last 6-9 months but am having an exacerbation. Ugh. Am actually scheduling a Mayo Clinic apt.
Oh I’m sorry to hear that.
What dose prednisone did you start on and for how long?
This is all new to me. My inflammation came down immediately on the 4 mg, I’m wondering if that’s rare and if I actually have PMR. Everything I read says that people start on such a high dose. I guess I’m lucky that I was controlled at such a low dose. I hate the fact of being on this medication, but I don’t like the symptoms when I’m not on it. Thank you for your time.
I hope you find some good results when you go to the clinic
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1 ReactionJohnbishop
I was just wondering if you could tell me how long it took for your PMR to go into remission? I’m three months in and I feel like I have a mild case because I started it on a very low dose of prednisone being 4 mg and my pain and stiffness completely went away the next day after starting The medication. I don’t want to rush it, but I also don’t want
to be on prednisone for an extended period of time.
I was told that it could take up to two years, but I feel like mine is such a mild case that maybe it won’t take that long. So I was just wondering how long it took for yours to go into remission and how you did with the tapering down of your prednisone
@mimi1204, The first time my PMR was diagnosed I was started on 20 mg prednisone which provided relief from the pain within an hour or so of my morning dose. It took me 3 and half years to taper off of prednisone with the last six months going back and forth between 1 mg and 1/2 mg (split 1 mg tablets) until I was finally able to stop taking prednisone and only had an acceptable amount of morning pain/discomfort (less than 2 on my personal scale of 0 to 10) which went away after being up and moving around for a bit.
I stayed in remission for about six years and then the PMR came back and again I was started on 20 mg prednisone. This time I had a better handle on managing symptoms, eating healthier with less inflammatory foods and sugar. I was able to taper off of prednisone in about 1 and a half years. So far my PMR has been in remission and it's been almost 7 years.
You might find the following discussion helpful for tips/suggestions from other members on managing the symptoms:
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
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2 ReactionsHi, Mimi, I’ve also been well controlled on a low dose of prednisone. I managed my pain for almost nine months on NSAIDs, but finally started on 5 mg of prednisone when the long term NSAIDs were causing their own problems. Weaned down to 2 mg, but bumped back up to 5mg when I started getting vague, minor headaches out of an abundance of caution. That dose cleared up the headaches and I’m weaning down again. I’ve found I’m very sensitive to most meds, so having the low dose prednisone be very effective is not a surprise.
My journey was similar 2 and a half years with the first bout and 20 mg to start. Subsequent bouts have started at 5 and been much shorter.
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2 ReactionsI have just been told that I was very likely misdiagnosed 14 months ago by my original rheumatologist. I am seeing a new one who thinks I have late-onset rheumatoid arthritis, which is somewhat different than the early onset type. It has a sudden onset, like PMR, and affects larger joints, such as shoulders and knees, also like PMR. I was sero-negative for RA originally, but now a much more sensitive set of blood markers has become available. It is called “anti-CAR-P” and one of my values (anti CAR-Pab) is high, indicating early stage RA. Also, I had an ultrasound of my shoulders, which revealed areas of bone erosion, which is not usually found in PMR but is indicative of RA. All this info was provided by my pcp, but I see my regular rheumatologist on Monday.
-
Like -
Helpful -
Hug
2 ReactionsMany autoimmune disorders "overlap" with PMR. As unfair as it sounds, people can have more than one autoimmune condition. I have PMR in addition to several other conditions.
RA and late onset RA (LORA) are just one type of inflammatory arthritis. There is a whole family of another type of inflammatory arthritis called the spondyloarthritis family.
https://www.arthritis.org/diseases/spondyloarthritis
----------------------
There are many conditions both autoimmune and non-autoimmune that can mimic PMR. Many of these conditions respond rapidly to prednisone but only the symptoms respond. Depending on the condition, prednisone might not be the best treatment. See Table 1 in the link below.
https://www.ccjm.org/content/87/9/549
-
Like -
Helpful -
Hug
2 ReactionsThanks @dadcue for sharing these articles, both of which shed some light on my situation. I don’t think I fit the criteria for any of the spondyloarthritis conditions, but I will ask my doctor. I do have extensive lower back issues, but the neurosurgeon I saw says they are all due to osteoarthritis. When I got an X-ray of my sacroiliac joints and it was normal, my rheumatologist at the time ruled out ankylosing spondylitis. So currently my diagnosis is “inflammatory arthritis”. We’ll see if that gets more specific as time goes by, but I guess the important thing is that they are all treated with similar drugs, none of which involve long-term prednisone.