Low sed with symptoms of pmr
Posted , 6 users are following.
The last said rate that I got was 11 I was so thrilled with 11 I started to down my pred and I was down to four all of a sudden everything got shot my arm started to ache my legs eight no energy I just like couldn't move I finally decided forget it I am I am going to Up my prednisone so I went on yesterday to 10 and today to 10 and I feel a lot better is it possible to have a Low sed rate still have all the symptoms of PMR help
0 likes, 10 replies
lodgerUK_NE TERI23
Posted
Long answer, send me a pm with your email address and two reduction plans wil be sent to you free of charge.
PMRpro did one and I did the other. Both based on Ragnar (Swedish) whose story is on pmr gca northeast support website.
lodgerUK_NE
Posted
Golden rule no more than 10% at a time and slowly does it and the plans give you two options of how to do it by sneaking up on the pred and your body. Remember the aim is remission with the least pain and no yo-yoing if possible.
Anhaga TERI23
Posted
My doctor says we treat symptoms not test results. She does get my ESR tested every three months, but from the beginning my numbers were considered within normal "for my age" although I presented a number of times over many months to my former doctor, who did not diagnose me on account of those low numbers, with debilitating pain. Lots of PMR patients have low numbers.
tpaggs TERI23
Posted
My Rheumatologist told me not to rely solely on Sed rate and CRP rate. There were several times when I was feeling good but my rates were not at normal levels. Also, try tapering slower; like 1/2 mg at a time. I was stuck at 2 mg. I finally tried tapering 1/4 mg and, so far, I'm doing okay. If I can get through this week, i'll continue at 1 3/4 'til I get my next blood work results and see my Rheumatologist. I'll go as slow as I have to to achieve my ultimate goal of zero!
FlipDover_Aust TERI23
Posted
gillian82551 TERI23
Posted
Anhaga gillian82551
Posted
Gillian, how have you reacted to the 2.5 mg drop? Did the aches in your legs start after the reduction? Are they getting better? This is far above the 10% drop which is recommended for tapering. Going directly to 5 from 7.5 will be an even higher percentage. The idea behind dead slow and similar plans is that we don't suffer as much from steroid withdrawal, which mimics PMR almost perfectly but goes away after time, and we are also less likely to trigger a flare in the disease.
lodgerUK_NE gillian82551
Posted
One, every top Rheumatologist says the golden rule is No more than 10% at a time.
The ESR and CRP results are just guidelines - no more and no less.
Some people's ESR & CRP rates do give them a good guideline, others do not, some peopl's are never ever raised.
They can also be raised when something else is going on. The classic case was mine.
ESR never done because I had GCA.
CRP yes and a fairly good marker until the day I got a Kidney Infection. I had had my CRP done the three days before - came back OK. 3 days later another blood test because I was very unwell.
Result GP knocking on the door at 9am because the result had come back and I was in the early stages of GCA. Why did he come, the CRP was raised to 242.
When I sat him down with a cup of coffee, I then said CRP and ESR are guidelines to something going on - you then find out what that something is. You told me that when I was diagnosed with GCA. He laughed and said I was so so worried about your GCA that I forgot, it was the first thing I saw on my desk this morning.
As an aside, difeerent hospital trusts use different scales.
Mine uses one scale. The Trust across the river uses another.
Beware comparisions. Listen to your body always.
gillian82551 Anhaga
Posted
Anhaga gillian82551
Posted
Oh that's great!