How to address PMR pain while decreasing prednisone

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I'm on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can't hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Hello @jchatchett, I'm so sorry to hear about the side effects and the pain. I know it can seem overwhelming at times. I see you mentioned you are at 9 mg dosage and go down every 4 weeks. Did your doctor give any instructions about if the pain gets bad again to go to the previous dosage? I would talk with the doctor about the pain. My first occurrence of PMR I was put on 20 mg and after awhile he gave me a schedule to try tapering off of prednisone. He also told me it would be difficult and it was. It took me 3 years before the pain went away enough I didn't need the prednisone. The last of those three years was bouncing back and forth between 1 mg to 1/2 mg dosage until I finally stopped taking the 1/2 mg dosage and the pain was gone.

Have you told your doctor about the side effects you are experiencing? My rheumatologist told me that PMR was the arthritis everywhere disease. I'm guessing that was the easiest way for him to explain it at the time. There is a lot of information that describes it along with symptoms, treatments, etc..

Mayo Clinic has some information here - http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/definition/con-20023162.

NIH page has some good information also - https://www.niams.nih.gov/health_Info/Polymyalgia/default.asp

Hoping you can find some relief for your pain.

John

Thanks for the reply. I'm wondering when you know you should start tapering off the prednisone. I have been on 4 mg since June 2015. I have tried taking half a pill but have pain and resort to going back to the whole pill again. If you still feel pain when you cut down, does that mean you are not in remission? Or are there other indicators? And should you suffer through some pain when you taper down? I'd really like to get off this prednisone.

jchatchett, have you checked out other things that might be causing what you feel are side effects of prednisone? E.g. hair falling out can be an indicator of hypothyroidism often missed by MDs Also, magnesium helps leg cramps and a-fib, but you need a liquid kind like Re-Mag so that your body can absorb it. You can read more about liquid magnesium on Dr Carolyn Dean's website if you are interested. I know exactly what you are going through, as I also pray for remission and stopping the dreaded prednisone. Good luck to you.

You mentioned that you were on 4 mg dosage or prednisone and when you try taking a half of a pill (2 mg?) that the pain is back. Is this correct? If this is the case, I would talk with your doctor to see if they can write a prescription for the 1 mg prednisone. It may be more expensive but it's easier split the 1 mg tablet then you have a 1/2 mg dosage so could go from 4 mg down to 3-1/2 mg. I would tell your doctor you are having difficulty tapering the dosage and ask if they have any suggestions on a titration schedule. My Mayo rheumatologist helped me when I was having difficulty. It's something you just have to keep working on. Also, are you able to do any hand, shoulder, arm exercises? They really will help even if you have a little pain.

Hoping for some relief for you and that you will be able to taper off of prednisone.

John

I had PMR and was on prednisone for 18 months. The side effects were terrible, especially the weight gain. I did not experience any difficulty tampering off. I started at 20 mg and went down to 2 mg. Fortunately I have been in remission for over 3 years. Please check with your physician after tapering off. You may not be ready. I do recall the the awful pain before I started on prednisone. <br><br>

Getting off of the prednisone is difficult. I agree w John, that you have to do what works for you and be your own advocate. I went back to my rheumatologist and said I have to go back up on the prednisone bc I can hardly move. She wants me off of it, but it evidently is not the right time. I talked w an older physician that I work with and he said not to worry about the side effects when you are at a lower dose of 5 mg, that there should be few side effects at that dose. I really should go back up from 5 to 7mg, but I like you just want off of this stuff. I am surprised that I have less pain in my shoulders and arms and hips, (I say less pain, not no pain).
Most of my pain has now moved to my feet. Especially the sides of my feet, makes it difficult to walk, but I go to work for 1/2 a day every day. I say, we all have to keep moving, and I agree w John that we have to find the exercise we can to help w the stiffness.
Ugh. This is terrible stuff! Prayers, Exercise, and being positive. We got to do it!!!!

I do the hand exercises from Mayo link below and some of the things from the second link. I have trouble finding time to walk so I have recumbent exercise bike with large seat and pedals (it's a recumbent bike, elliptical combination - I just don't use the elliptical part). I use it 4 to 5 times a week for 30 minutes at a time when I first get up. I find doing it first thing helps with the stiffness.

Here are some easy to do hand exercises for people with arthritis that I think also help for those of us with PMR;
http://mayocl.in/2lYSXKu
Here are some exercises for people with PMR - I would just try to find something that is easy for you to do. Lot's of recommendations and choices here.
http://bit.ly/2m3zCIL
One day at a time, one step at a time ☺

John

@jhatchett. This is a suggestion for you. Both myself and my sister-in-law had been diagnosed with PMR year 2013.
I personally had it for almost three years. It' an autoimmune disease caused by inflamation somewhere in the body which
Doctors can only tell by a high CBC or a high sedimentation No. Mine was 14 at the time. But here's the the part I want you to know.
In checking with a neurosurgeon for back pain It was discovered that we both had stenosis of the cervical neck and we both had
Surgery. Arthritis and Spurs were squeezing the spinal cord causing all the symtoms you describe. I now have no general body
Pain but I still have my back pain because of a separated SI joint for which I need more Surgery. That won't be until I feel my neck
Is completely healed which will take time and more therapy. You would need to see a very good Brain and Spine Neurosurgeon!
For X-rays to be sure this is not your problem. I feel since this was two of us PMR may be a misdiagnosis. Worth a try!
Feel better. From Daisybud12. PS. Joan lives in Reading, Pa I live in No. Florida

This is most interesting. My husband had a neck injury many years ago. It might be worth checking into as his rheumatologist is not 100% sure on the PRM.....