I was diagnosed in the summer with PMR--having a high CRP and SED rate--neither of them super high. I started on 15 mg of Prednisone and the pain immediately disappeared. Monthly blood tests after that showed normal readings. I am now down to 7 mg of pred, I feel no pain whatsoever, and other than feeling more tired than normal, I feel good. But my last 2 tests showed a high SED rate--December was 56 and today was103. I haven't had a CRP done recently--don't know why, the doctor just ordered a CBC and SED. Any reason why the SED rate could be so high?
I had tapered down to six mg Prednisone and had a sed rate of 112 and my Dr said I had every textbook sign of adrenal crisis..I was hot then cold, hurt all over, sweating and felt like I had the flu..he put me on a 60mg taper dose and almost a year later I'm still taking ten mg.. now I'm having blurry vision and hurt all over..it even hurts to reach for a glass of water..I have a Dr appointment tomorrow.... there's a reason of your sed rate being so high and your Dr should be able to figure it out ASAP.. Sharon
I have had a SED rate of over 50 and sometimes over 100 for the last three years. Doctors just shrug and say that I have a high SED rate.
Sed rate will increase due to a wide variety of things and a single rise not accompanied by any symptoms shouldn't lead to a kneejerk increase of pred. You have a trend - but without PMR symptoms it is unlikely to be the PMR. If it continues your rheumy should investigate other possibilities.
Every day I wonder if I really have PMR but that's what I was told December eleven 2014 so I jumped on the Prednisone train and here I am..my son and friend keeps insisting I go to Rochester NY and see a specialist and get a good diagnosis.. Rochester NY is a medical center that has a Dr for every detail of the body..it's about one hundred miles away..any thoughts on this idea? Thanks.. Sharon
It isn't that easy to "get a good diagnosis" - there are no definitive markers for PMR, it is a clinical diagnosis made on signs and symptoms. But if you are unhappy - maybe that is the thing to do.
I was diagnosed with PMR and felt great after 1 dose of 10 mg twice a day and felt Terriffic c but 2 days ago went down after 2 weeks to 1 10 mg and had some pains in arm and bad backache and sore hip and just feel lost like malaise..Like withdrawals..Anyone else felt like this??? God bless us a
Dear Phyllis, have I understood you right? Are you saying you have dropped from 20mg of pred a day to 10mg in one go? If so that is a huge reduction and I would have thought could cause you problems.
T,hankyou for replying I was taking 10 mg twice a day and after 14 days I have been lowered to 10 mg once a day
I suggest you take a copy of the "Bristol paper" as we call it to your doctor and suggest they brush up a bit on how to manage PMR!!! A more normal approach is 15mg/day as a single dose for 4 to 6 weeks or until all symptoms have improved as much as they are going to and blood markers, if appropriate, are low and stable.Then the biggest reduction should be by 2.5mg and remain at 12.5mg for a further 4 weeks - some people don't even manage to tolerate 2.5mg at a time and find 1mg drops far easier.
You will find the link to the Bristol paper in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
nearly half way down.
You were so right. Excruciating pain called Rhemy but weekend so too Bach to 10 times 2 and better..Will cal Rhemy tomorrow Monday Thankyou for getting back to me.....So appreciate it....God bles
I agree with Eileen. Research a little more. The common treatment for PMR is 2-3 years. I found a great rheumatologist. My CRP was 14 and SED was 103. I suffered for 2 months before finding my doctor. Used Prednisone. Started at 20 mg with little result so I went up to 35 to knock it out, two weeks. Went to 30 and started on Eileen's documented approach: 2.5 mg reduction every 4 weeks. There will be setbacks. I got to 20 mg and had a flare up. Went back up to 27.5 mg and worked my way back down. Got down to 12.5 mg and got a cold (immune system weakened) and back up to 17.5. When I reached 10 mg, the doctor recommended 1 mg reduction every 4 weeks. I went through 3 flare ups while under 10 mg. Started Pred 8/8/2015 and took my last tablet 9/10/2017. Be patient. While under 10 mg, my doctor allowed me to manage my flare ups. I was to the point that I knew how high to go when symptoms came back. So I was at 5 mg and went back to 9 mg, but I went down 1 mg after 2 weeks until I got to 5mg again. I believe everyone will have a different experience, but getting symptom free I had to go 35 mg. They say over 20 mg is bad, but my path was different. Take the recommended supplements (calcium /d3). Get a pneumonia shot. Exercise. I wish you well.
It's actually not recommended to increase pred in the event of an infection, e.g. a cold. Treat a cold in the normal way without extra pred, but maybe use a cold remedy which includes acetaminophen and a decongestant, keep warm, rest, and drink fluids.
My doctor and I both agreed that the PMR symptoms took precedence over everything. I should have been more specific. The Pred wasn't used to treat the cold. With a cold that weakened my immune system, my symptoms started to come back, so I increased the Pred enough to the point that my symptoms went away. I treated the cold as any other cold would be treated. The key to resolving PMR and getting off Pred is to remain symptom free from start (my was 35 mg) to finish.