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Posts (15)

Dec 1, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

Hello barbararene…this is Joe (Mach92). I’m sorry you had a relapse. When were you diagnosed with PMR? I assume you had all the required blood test testing your inflammation markers? BTW, when I was diagnosed, ALL my blood test were normal. I sure didn’t feel normal.

Last March I also had a relapse after reducing from 15 to 2.5mg of Prednisone over a 17 month period. Like you, I thought I was in remission. Ironically I was at the Mayo Clinic at the time for second opinions. The Mayo rheumatologist suggested I go back to 7.0mg, since I had just reduced to 2.5 a few days earlier. However, 7.0mg didn’t help and I ended up starting over and going back to 15mg. BTW, once I returned home and visited my local rheumatologist, he put me on 40mg of Tramadol….my first time. I was having difficulty sleeping through the night as I would wake up in a lot of pain and unable to get back to sleep. It did help!

Since March I’ve been trying to reduce my dosage of prednisone 2.5mgs at a time at 3-4 week intervals. My doctor gave me the green light to adjust up or down at my discretion. I am currently on 10mg and hope to reduce to 7.5 in two weeks. BTW, there were times I did have to increase the dosage. So it’s been somewhat of a roller coaster ride for me. Presently (knock on wood) I am doing OK on 10mgs. I see my rheumatologist on Monday.

Unfortunately everyone with PMR will have a relapse at some point. I can’t tell you to increase your medication, only tell you what worked for me. I would encourage you to stay active, walk your dog daily…..it does help.

I’m sure John will reply as well. He is a wealth of knowledge and an inspiration!

Nov 4, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

@johnbishop..best of luck with your dosage reduction. I most likely started to reduce too soon and too fast.

@rolandhp…yes, it does feel like I’m starting all over. It was two years last month that I was diagnosed with PMR….hard to believe. Got down to 2.5mg last March, but had a major relapse ironically while visiting the Rochester Mayo Clinic. Felt pretty good most of the summer on 10mg, but this recent relapse caught me off guard. I’ll taper much slower this time….1/2-1mg per month.

Nov 4, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

May 15, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

As long as the symptoms are under control, PMR should not prevent/limit you from doing anything you want. I’m 62, play golf 4-5 times a week and do not have many issues while on the correct dosage. About 3-4 weeks ago it was a struggle to get out of bed, let alone go play golf. Once I increased my dosage from 10mg to 20mg, I felt very good. In fact, I just got back from a 3 mile walk and feel pretty good.

When I was first diagnosed, I was anxious to get cured and move on. I made the mistake of trying to taper off prednisone too soon. However, I was only following my doctor’s advice and tapered according to his schedule, not mine. Your body is your best guide, everyone is different.

I would encourage you to look forward to ski season.

May 15, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

My understanding it is not curable but manageable. Did your doctor test your sedimentation rates?

Here’s a link you may find helpful.

http://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

May 15, 2017 · Polymyalgia Rheumatica (my story) in Autoimmune Diseases

I there a reason your doctor has you skip a day? Is it part of his taper off schedule? I am not a doctor, but everyone I know who have taken prednisone in the past have never skipped a day while tapering off the medication.

Unfortunately it may take 1-5 years for PMR to go into remission. My Mayo rheumatologist told me he has had some patients on prednisone for over 6 years, I’ve been on it since October 2015. My local rheumatologist wanted me off in 8 months!

Today I reduced from 20mgs to 17.5mg per day, once in the morning. BTW, I’ve read and my doctor confirms, prednisone should be taken before 9am. Something to do with the way the body processes the medication. You may want to google it if you haven’t already.

As far as being active, John is correct. The worse thing you can do is NOT stay active. I find walking helps a great deal with the hip pain.

Hang in there!