PMR Anyone?

Hi celebrant my name is Roland. I was diagnosed with PMR 1 year ago (March 2017) I started with 20 mg of pred. a slow process but one year later I am down to 5 mg/day I still have PMR but it is under control. The secret to all of this is stay positive & plenty of exercise. Do lot of walking & hit the gym as you do have to exercise those aching joints like I said it is not easy but you have to do it. My Dr. told me that only the person affected by this disease knows how he or she feels & how much pain one can tolerate before starting to tapering down from the pred. Go slow on the tapering only 1 to 2 mg at a time for at least a month if you feel okay try another 1 mg. You will know if it is to much if so increase it to your last dose. I have been on 5 mg now for 5 weeks & I know I am not ready to cut back any further right now. Like I said only the person affected knows how much pain one can tolerate before hitting the next threshold of cutting back. Another thing watch is the weight gain being on pred. myself I am lucky I have not gained any weight in the year that I have been on pred. maybe it is because of my exercise program I don't know. I eat the same foods as before & I do have my red wine every night. Good luck with all of this.

Hi @rolandhp -- I'm happy to hear you are doing well with your PMR. My PMR may have went into remission again (I hope). I've been on prednisone for a little over a year starting at the 20 mg dosage. My first occurrence of PMR in 2007 took my 3 years to finally get off of prednisone. The second occurrence has been much easier - only a little over a year and I have been off of prednisone for 9 days. I still have a little pain and stiffness in my hands and arms in the morning but it gets better during the day. I was going to try 1/2 mg dose but I think if I can tolerate a little pain for awhile it may go away.

You have a great point on exercise - it's key to keeping the PMR under control.

Good luck to all of us PMR folks in dealing with Mr. Nasty.

John

I want to get to where you are. I know my RA cannot be cured. I am taking chemo when I said oi never would. I won't see pain doctor until May.

Hi @oregongirl, have you tried any kind of diet or changed eating habits to see if it would lessen your RA symptoms or help it? I just ran across a diet for RA on the Arthritis Foundation website. While it wasn't the total answer with my PMR and neuropathy I think it's helped with my overall health.

Nutrition Guidelines for People With Rheumatoid Arthritis:
-- https://www.arthritis.org/living-with-arthritis/arthritis-diet/anti-inflammatory/rheumatoid-arthritis-diet.php

John

Yes this is nasty but we have to keep going not give up. Another thing that I do is keep busy that is besides my exercise program. I am very involved with our local PD, Being a small department they appreciate the help I have been with them for 6 years I put in around 40 hours per month sometimes more. Keep moving is the secrete. The only joints that really bother me now is the fingers & wrist especially in the morning sounds familiar doesn't it, but it doesn't bother me I keep my mind busy & try to ignore the discomfort. At least it is not like it was a year ago thanks to your support.

I haven't written for quite some time, but another issue has recently "cropped up". So, I was weaned down to 1 mg of Prednisone over a year and my pain came back. My doctor knows about my dislike of prednisone so she proposed that I take 10 mg. for 2 days (to "jolt" my system, I think were her words). She asked me if I remembered at what dosage during my weaning did I feel I could function the way I wanted to function with an acceptable pain level. I told her 5 mg. I have been taking this "maintenance dose" since then and I have my life back ! I can swim, do aerobics, yoga, garden, etc. YAY ! I do have some pain in my hip flexors and neck/shoulder area but it's definitely NOT like it was over a year ago ! She told me to be prepared to be on the 5 mg dose for a "while." Next appointment she hit me with the downside - prednisone is NOT good for bones. I have osteopenia anyway and she wants me to start taking the generic form of Fosamax because of the prednisone. I am a 70 year old small boned, white, caucasian woman - but VERY active (do lots of weight bearing exercise and eat a good diet). I have networked with friends and googled it to death. The doctor told me my bone density scans (every two years over the course of 16 years) show bone loss in my hips & spine of 22%. I picked up the script today still not sure I'm going to start taking it. One of the side effects is bone pain - sheez ... I've been suffering from bone (joint) pain (as you all know) for the past year and a half : ( I guess the only positive is if I have bone pain, I can quit the Fosamax, cold turkey (according to the pharmacist I talked to). Has anyone out there had this situation or know anything about bisphosphonates & PMR? Another conundrum with PMR & bisphosponates is, how do you know if your bone pain is from the Fosamax or the PMR coming back?
Thank you for reading this lengthy post !!

Hi @olegraymare -- I can relate. I also have osteopenia and the doc put me on (or wants me to take 1200 mg daily of calcium). I have been doing that but I'm looking for alternatives because I don't think calcium is the answer. I'm not really too active but try to do a daily exercise routine with 30 minutes on my recumbent exercise bike. I'm 74 and have only been off prednisone for 15 days for this second bout with PMR. I'm going to think long and hard before taking fosamax. I have no medical background or training but I also do not like taking any medication unless it's absolutely necessary...and I try to extract that tidbit of information from the doctors. I did find some info that may be helpful from the Harvard Medical School.

What's the story with Fosamax?
-- https://www.health.harvard.edu/diseases-and-conditions/whats_the_story_with_fosamax

Also, this one from the Journal of Bone and Mineral Research: An Essential Warning
-- http://onlinelibrary.wiley.com/doi/10.1002/jbmr.3359/full

John

Thank you, John. As always, you have some great information to give us all ! I will read both of these.

Jan

As always, there are always questions ... such as - do low doses of prednisone cause the bone loss issues as much as higher doses? I don't think there are any answers to that question as far as my googling has discovered !

Google Scholar (https://scholar.google.com/) is a great place to search for answers like your question. I just did a search for "prednisone cause bone loss" and the first link it found was:

Low-dose prednisone induces rapid reversible axial bone loss in patients with rheumatoid arthritis: a randomized, controlled study
-- http://annals.org/aim/article-abstract/706870/low-dose-prednisone-induces-rapid-reversible-axial-bone-loss-patients

Here's the search results link:
-- https://scholar.google.com/scholar?hl=en&as_sdt=0%2C24&q=prednison+cause+bone+loss&btnG=

John