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flicka
@flicka

Posts: 2
Joined: Jun 21, 2018

Long term Polymyalgia Rheumatica

Posted by @flicka, Fri, Jun 22 5:45pm

I was diagnosed with PMR in 2011 and have never been in remission. I am currently taking 9 mg of prednisone and 20 mg of methotrexate. Most days I feel pretty good (due to exercise and good food) , but am unable to reduce my prednisone dose even 1/2 mg. It seems like there are few people who have PMR this long. I would love to hear stories and suggestions from those who are still dealing with PMR after 7 or more years.

REPLY

Hi @flicka — welcome to Connect. My PMR has come and gone twice and the first time in 2007 lasted until 2010. The second time in mid 2016 and lasted until Feb this year. I think it's one of those things where each of us are different to how the disease and the treatment affects us. My treatment for both times was starting at 20 mg prednisone and tapering off as soon as I could with minimum pain. I wasn't aware of the methotrexate use with prednisone until someone started another discussion here on Connect.here:

Groups > Autoimmune Diseases > PMR and Methotrexate
https://connect.mayoclinic.org/discussion/pmr-and-methotrexate/

I'm tagging @paulinef who created the discussion to see if she may have additional information on it's use. @paulinef is your PMR still active? Are you able to provide any information for @flicka

John

Thank you for your reply, John. I appreciate the Pub Med article on methotrexate use with prednisone. The addition of methotrexate to my med “cocktail” was to, of course, get off prednisone. In fact, I am now taking 2 mg. more than when I started methotrexate. I guess another question is whether
people with a lengthier case of PMR have seen doctors at the Mayo Clinic (or other prestigious clinic) for a second opinion…and what was their experience.

@flicka

Thank you for your reply, John. I appreciate the Pub Med article on methotrexate use with prednisone. The addition of methotrexate to my med “cocktail” was to, of course, get off prednisone. In fact, I am now taking 2 mg. more than when I started methotrexate. I guess another question is whether
people with a lengthier case of PMR have seen doctors at the Mayo Clinic (or other prestigious clinic) for a second opinion…and what was their experience.

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Hi @flicka, I'm not sure if it helps you but another tool I use to find research type information is Google Scholar (https://scholar.google.com/). It has date links on the side so that you can select the newest articles and show patents and citations along with the search results. I did a search using the terms – methotrexate use with prednisone for PMR. Here are the results:

https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=methotrexate+use+with+prednisone+for+PMR&btnG=

My first round with PMR took 3 years to get off of prednisone and the rheumatologist that diagnosed my PMR at Rochester Mayo Clinic had shared with me the story of one of his patients who was going back and forth between 1 mg and 1/2 mg dosage for a couple of years before he was able to get off with no pain. I don't know how long he had been diagnosed with PMR but I'm pretty sure if was longer than the 3 years I was struggling with at the time.

John

@flicka

Thank you for your reply, John. I appreciate the Pub Med article on methotrexate use with prednisone. The addition of methotrexate to my med “cocktail” was to, of course, get off prednisone. In fact, I am now taking 2 mg. more than when I started methotrexate. I guess another question is whether
people with a lengthier case of PMR have seen doctors at the Mayo Clinic (or other prestigious clinic) for a second opinion…and what was their experience.

Jump to this post

Sorry I haven't posted for a while but I do want to let you know that I am now down to 5 mg prednisone since I first started in March 2017 at 15 mg, and for the past two months have also been on methothextrate (6 mgs per week, down from 8 which did not agree with me). I am doing reasonably OK but find the metho makes me tired more easily – I see my doctor soon so will see what she thinks. I am determined not to have to increase the prednisone so suffer from stiffness in the first part of the mornings but lots of exercise seems to stave it off for the rest of the day. Night time sleeping is still a problem but Tylenol Arthritis helps me through.
Hope this info is of help and I will update again soon.

Sandra

@flicka

Thank you for your reply, John. I appreciate the Pub Med article on methotrexate use with prednisone. The addition of methotrexate to my med “cocktail” was to, of course, get off prednisone. In fact, I am now taking 2 mg. more than when I started methotrexate. I guess another question is whether
people with a lengthier case of PMR have seen doctors at the Mayo Clinic (or other prestigious clinic) for a second opinion…and what was their experience.

Jump to this post

Thank you for the update Sandra @paulinef. I also suffer from joint and muscle stiffness and have found that if I do about 15 to 30 minutes of mild exercise in the morning when I first get up it helps the rest of the day also. I have a relatively inexpensive recumbent exercise bike / elliptical combination exercise machine and was doing mostly the bike but recently switched to using the elliptical to add more weight bearing exercise to build up my leg strength.

Is the night time sleeping problem due to pain from the PMR? Some people have had success changing the time they take their or splitting the dosage between morning and evening. You might want to discuss it with your doctor to see what they say. If the methotrexate makes you tired maybe you could take it at bedtime?

John

@flicka

Thank you for your reply, John. I appreciate the Pub Med article on methotrexate use with prednisone. The addition of methotrexate to my med “cocktail” was to, of course, get off prednisone. In fact, I am now taking 2 mg. more than when I started methotrexate. I guess another question is whether
people with a lengthier case of PMR have seen doctors at the Mayo Clinic (or other prestigious clinic) for a second opinion…and what was their experience.

Jump to this post

Sorry I should have said I am on six x 2.5 mg Methotrexate per week

Hi John – thanks for your input. The prednisone is one single 5 mg tablet so I can't split it up, so take it during breakfast. I have just started to take the methothextrate at supper time but I have to take the six tablets all at once.

My morning stiffness wears off fairly quickly as long as I keep moving – I have two dogs that need attention and exercise! I try to bike outdoors once a day and use my indoor bike every evening watching TV – I'm sure this helps to keep the PMR at bay somewhat. My shoulders get pretty sore at times and will improve once I get back to weekly Aquafit (hard to do in the summer months).

Sandra

@paulinef

Hi John – thanks for your input. The prednisone is one single 5 mg tablet so I can't split it up, so take it during breakfast. I have just started to take the methothextrate at supper time but I have to take the six tablets all at once.

My morning stiffness wears off fairly quickly as long as I keep moving – I have two dogs that need attention and exercise! I try to bike outdoors once a day and use my indoor bike every evening watching TV – I'm sure this helps to keep the PMR at bay somewhat. My shoulders get pretty sore at times and will improve once I get back to weekly Aquafit (hard to do in the summer months).

Sandra

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That sounds like a great routine and I'm sure it helps a lot. I have split the 5 mg prednisone tablets (even the 1 mg but they are a lot harder). You can get the 2.5 mg tabs for prednisone if that helps. I used them along with the 1 mg tabs when I was trying to taper below 5 mg.

@paulinef

Hi John – thanks for your input. The prednisone is one single 5 mg tablet so I can't split it up, so take it during breakfast. I have just started to take the methothextrate at supper time but I have to take the six tablets all at once.

My morning stiffness wears off fairly quickly as long as I keep moving – I have two dogs that need attention and exercise! I try to bike outdoors once a day and use my indoor bike every evening watching TV – I'm sure this helps to keep the PMR at bay somewhat. My shoulders get pretty sore at times and will improve once I get back to weekly Aquafit (hard to do in the summer months).

Sandra

Jump to this post

That’s s good idea – l’ll hopefully be able to do that once I’ve seen the doctor next week

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