Recent SED test raised from 8 last year to 18. Not sure why.
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Diagnosed January 2016 after living on Ibuprofen for the previous year. Stopped Ibuprofen and began having a life again on 15 mgs Prednisone. Have been on 6 mgs for over a year. Attempted reduction to 5 mgs in ½ increments a few times unsuccessfully the slow way.
Last year I had a knee replacement in April. On the second day of recovery, a blood thinner caused unknown ulcers to bleed. I am reluctantly taking Omeprazole–Ramitidiine gave me hives. The knee is healing well and I recently walked into town for the first time in three years with my little dog remembering where all the treat stores were after all that time.
I had a painful hip previous to PMR which an MRI diagnosed as bursitis in 2014. Have had steroid shots a couple of times within the last two years. Hip was very painful on the blood test day, January 2018. As the days went by, hip got better but have to use cane because of pain. My theory was hip pain caused SED rate rise but GP Dr. said that would not affect blood test.
Since I admitted overall stiffness in the morning, Dr. recommended upping pred dosage and/or a steroid shot to the hip, or seeing a Rheumi. I can’t/won’t travel hundreds of miles to see a specialist. Since a previous PT session involving hip exercises and electrical nodes to the hip did not solve the problem he ordered PT for core exercises which I accepted.
My choice now comes down to upping the pred, getting a steroid shot to the hip, and/or wait and see for another week or so for PT. I would appreciate comments.
0 likes, 13 replies
BettyE peggy_56092
Posted
If it were me I'd settle for upping the Pred. You are down to 6 in a very respectable time. As you say, it gave you your life back when first prescribed and likely would again.
Six is quite a low dose and many of us have found around this level can be sticky. For me it came sooner and my excellent GP said stay on 10 for three months.
Like you I opted to be managed just by my GP. Unless there are special reasons and if you have a GP who is on the ball why put yourself trough the extra stress of hospital appointments?
Re the omeprazole, I can't comment as I didn't need it. Taking my pred. with a couple of tablespoons of yoghurt worked for me.
My sister who was diagnosed with PMR around Christmas, has also been prescribed omeprazole and is wondering whether it is really necessary. Would it do any harm just to stop taking it for a bit, I wonder? I think I'd ask if it were me. I hate the idea of taking anything unless it is really necessary.
It took me five years to get zero steroids and nearly five years on from getting to zero I'm still ok, albeit a lot older,and do have days when I keep my fingers crossed that my OA really is just that and not a third round of PMR.
peggy_56092 BettyE
Posted
Thank you for your response BettyE. I just decided to increase my pred dosage to 8 mgs today as I feel some shoulder pain and don't want more. I think I will gradually reduce after a few days, maybe back to 6 mgs as I have so enjoyed seeing my hair grow back. And my face slim down.
I forgot to add that I also just started taking Alendronate Sodium again. I took it about 5 or 6 months worth previously, stopping because of dental work and knee replacement. The dr requested taking it for a year before getting another bone density test. I last had one almost three years ago which showed osteoporosis.
EileenH peggy_56092
Posted
I think you have already made your decision and it is what I was going to suggest. But don't rush back to 6mg - it wasn't quite enough and has, over time, allowed enough inflammation to build up to cause the flare. Bursitis shouldn't increase the sed rate unless it is infected and almost anything will increase a sed rate, even a mild cold!
Who decided you should use ibuprofen for so long? No wonder you ended up with bleeds! One of my friends ended up in hospital with a gastric bleed after 3 doses of ibuprofen as recommended by her GP for her PMR!
As Betty says, this is a tricky dose for many people - and it isn't a risky dose at all. If you lower it, your body will just make more corticosteroid in the form of cortisol - it needs the equivalent of a pred dose of about 8mg to function properly. And from there on there are few effects you wouldn't have experienced anyway:
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
peggy_56092 EileenH
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In 2013, before my PMR diagnosis, I was seeing a Nurse Practitioner who gave me 500 mg Naproxin twice day with food for my hip pain, which she called arthritis with no tests. After reading about this med and feeling unwell when taking it decided not to I took Ibuprofen instead. Previous to that, she gave me 30 mg prednisone for three days for allergies when I complained of congestion. The Pred caused a rash so I discontinued it.
August 2014, I changed to an MD who gave me, after blood tests and chest x-ray, Levofloxaciin for possible pneumonia. After two days and two pills, I could not walk up the stairs. I was then taken off that and given a short course of Azithromycin and Cefuroxime, bone density scan, and CBC Blood test showing mild anemia. In Sept I developed night sweats, chills, tight muscles, 20 lb weight loss, weak leg muscles. I had a minor rotator cuff tear that became worse when my arm was raised for a CT scan. Most of that year I was taking Ibuprofen while taking unsuccessful physical therapy for my hip, receiving a Pneumonia shot, more blood tests, bladder ultrasound for a pain in my side (the ulcer we didn't know about?), and a flu shot.
December 2014, I switched to my present dr, who consulted with previous dr, and gave me Pred for PMR. Many months or a year later I discovered this wonderful site for knowledge I wish I had had then. Yes Elaine, I will stay hopefully at only 8 mg for a while. Thank you so much for all you do.
EileenH peggy_56092
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You really have been messed about - hope you can leave it all behind you.
peggy_56092 EileenH
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BettyE peggy_56092
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Best wishes for re-directing your energies.
I wish I could be more accepting of the limitations of old age. I know it does no good but the best conversation I have all week is with my equally unresigned sister. We rage about the state of the world, how long it takes to do everything, how we hate having to get help for stuff we have always done for ourselves. I'm still not resigned to getting a window cleaner and am pleased the sun is getting higher so it doesn't shine through the grime. We both live in houses that are much too big but will not move. It would be like cutting off a major part of our lives, Anyone with any solutions , please reply
EileenH BettyE
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At least you have the option of saying you don't want a window cleaner! It means having a cleaner here - and finding one!!! I physically can't do my windows - and the sun is shining in ...
peggy_56092 BettyE
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I live in a too large compound that used to be my late husband's art studio where we had many dogs and cats, birds, etc. I wash my windows with a garden hose if the water pressure is strong enough to go against the ocean wind. I am reduced to a small dog, whom I love, and a few friends and neighbors who take me shopping and eating out once a week. Politics is the worry these days in the US. Some people are afraid to voice their preferences. I hope there is a solution soon.
rhea28447 peggy_56092
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My SED rate and CRP are raised quite a bit now, but the internist said it was probably related to a persistent UTI that I am fighting. At any rate, he wasn't concerned about it--he was just extremely surprised that I was having no pain, even though the levels are raised! I'm currently on 7 mg of Pred--have been for the last 7 weeks, and I'm not going to try to reduce until the levels have lowered somewhat.
peggy_56092 rhea28447
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phyllis48183 peggy_56092
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peggy_56092 phyllis48183
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