Ahead of my GP appointment tomorrow, I'm pleased to learn that my ESR is now 3, was 44. My C reactive protein is now less than 1mg/L. This is after 6 weeks on Pred
I know the results are normal, even good, but for those of you who have more experience, is this par for the course?
Yes, if you are taking an adequate amount of Prednisone to control the inflammation, I believe. That is how mine is on Prednisone.
Although, there are people who have normal ESR and CRP with PMR before steroids..
Yes, that's what's so confusing.
linfran, yes as Paula has said, if the dose of steroids is sufficient for the amount of inflammation circulating it is normal for those with high blood test markers at diagnosis to find that those markers can quite quickly return to normal. However, don't be lulled into thinking that the PMR is cured - sadly there is no cure at present - and the normal blood test markers, atlhough reassuring to see, are really an artificially induced result, plus none of us knows what our personal 'normal' readings were prior to PMR. I do hope that makes sense - well I know what I mean!
I think I do. So maybe somewhere down the line in the tapering process, the readings may well increase. That's if I've read the situation properly.
Odd, and unhelpful in some way, that some people with PMR never have increased readings.
I am at 2 mg and reducing to 1 using dead slow method. Started at 20 mg. Since being on Prednisone, my ESR/SED rate and CRP have been consistently normal as I reduced, despite being one of those with elevated markers prior to Prednisone. I have blood drawn on a monthly basis. Praying for reaching the end of the tunnel soon.
Good luck!
The Mystery of PMR!!
The readings are only likely to increase if you reduce the steroids down to too low a dose, passing the point where the inflammation is only just under control and leaving it at risk of breaking through again. Tapering slowly and in small decrements makes it easy to see where pain might be breaking through enabling you to quickly return to the previous dose to get things under control again. But as I said, this is far less likely to happen with slow tapering of the dose - always providing, of course, that we stay infection-free and stress-free - not always easy but essential if we want to avoid aggravating our reduction programme.
Yes, I agree, it does seem odd that some people never have raised ESR and CRP markers with PMR - 1 in 5 are so affected. I always considered myself blessed to have raised markers - they can prove such a useful guide to reducing, although symptoms must always be key.
Paula, well done, fingers crossed for you.
How long has that been?
Very best wishes anyway. The light at the end of the tunnel is visible.
Hi Linfran and MrsO!
Thank you for the very good wishes!!
Started at 20 mg in December 2013 after being undiagnosed for nearly 4 months and as you know, awful, awful time.
Slipped on ice and shattered shoulder in Feb 2014. PT after 3 weeks.
Reduced slowly to 10 mgs by June 2014, but had to increase to 20, then as high as 60 mgs for nasty skin eruption on torso (undiagnosed). 9 mg by August 2014.
February 2015: 7 mgs
June 2015: 5.5 mg
Cataract Surgery June 2015: Increased to 10 and then back to 5.5.
December 2015: 4.5 (Stress at work and retired in November and 25 people for Christmas and responsible for all shopping, gifts and cooking, flu: slowed down reduction.).
February 2016: 3 mgs. (Complex and persistent migraine (5 weeks). Tripped over my beautiful dog. My face met the sidewalk and knocked out 2 front teeth. Dental surgery, acupuncture for migraine.
April 2016: 2 mgs. (Taking care of young grandchildren, son moving out of the area. Waited until son and family left and can focus on me).
August 1, 2016: begin reduction from 2 mgs to 1mg.
Turn 70 on August 17.
Activities: Walk 40 minutes daily. Yoga 25-30 minutes daily. Currently swimming 40 minutes 5-6 times a week. Row on a Concept II rower for 20-30 minutes in winter several times a week. (Exercise via Rheumy orders).
I am fortunate in that I have few side effects from Prednisone and am generally healthy. The blood pressure, blood sugar amd cholesterol were still within normal range, but elevated for me. I have always stayed off carbs, sugars and animal fats. Drink a lot of water. Take Calcium and Magnesium supplements, Estrogen, Pantoprazole. Also take Gabapentin (300 mgs, was prescribed in a much higher dose when previous rheumy thought I had Fibro. Current rheumy and Internist want me to stay on it until I get off Prednisone.)
Hope this helps. We are all so very different. Praying for no bumps!!!
Paula, all sounds good. I'm particularly impressed with all your exercise and if you aren't getting any payback from all that then it sounds promising at 2mg. Keep it up!
....and just to throw a spanner in the works - my CRP never went down, not even at 50mg dose!
Paula. very impressive activities list. You go girl !
When did you start your exercise program ? Right after being diagnosed with PMR or later? How hard do you exercise and what issues did you have, if any?
Hi Nick,
Because I dislike sitting still, I have always done some form of exercise and none of it enough to be considered a 'jock.' I have danced, jogged, played tennis, raquetball, done aerobics, rowed, walked, whatever. I prefer to stand than to sit.
I believe that in addition to burning the candle at both ends: working and taking classes in the evening, what precipitated the PMR was rowing our rowboat for 2.5 hours in a cramped position and getting a Baker's Cyst on my right knee. I had surgery to the knee about 30 years earlier, due to a meniscus tear. The knee also has a torn ACL, due to a nasty skiing accident, when I was 21 or so. The Baker's Cyst ruptured about a month after it formed. I then had the classic PMR symptoms: unable to lift arms, turn neck, crouch, bend, sit, stand, get up, get dressed, sleep etc. etc.
After numerous misdiagnoses from 5 doctors, I finally found the Rheumy who prescribed Prednisone. After 3 weeks, on my return visit, in which she confirmed PMR, since the Prednisone took away all my symptoms, short of a frozen shouder, she gave me a prescription for PT. PT was twice a week, and I was told to use Thera Bands and lift 1 lb weights (soup cans) between sessions. I also restarted my yoga program. Within a few weeks the shoulder unfroze and the Rheumy ordered me to start rowing again. We have a Concept II Rower (a.k.a. ERG) in our house, since my son did crew and my husband coached. By the time I slipped on the ice and broke my shoulder, 2 months after PMR diagnosis, I was doing 20 minutes every other day at a resistance of 4. Needless to say, I had to stop, but then by week 3 after the shoulder injury, the Ortho told me to start PT. The routine was the same, every other day with Thera Bands, with increasing mobility and weights. Week 7 post shoulder break, I was back on the ERG working up again and doing yoga. By June 14, I was back on our 17 foot rowboat, rowing. Stopped again, when the skin eruption happened, as heat seemed to aggravate it. By the fall, I was back on the ERG.
In terms of swimming: the brutal 101 humid heat here in the DC area makes it impossible to do anything outdoors, other than to turn the AC on in the car and speed through a grocery store before the car gets hot again. Hence the swimming. I do this in our neighborhood pool about 5 times a week for about 40-45 minutes. I do breaststroke, sidestroke, back stroke and tread water. I move constantly. I do not do freestyle. Once the pool closes, I shall go back on the ERG. My only issues with swimming have been a slight twinge in my neck from holding my head up during breaststroke and some mild thigh and butt soreness. I sometimes take Tylenol for it. (Paracetamol).
In addition, I walk the dog in the early morning and do yoga every day. I took yoga classes for over 10 years weekly in a style well known globally and know what I need to do to keep limber to help my back and avoid injury. I also do a lot standing up and walking around and our house has a basement and 3 floors.
The truth is, I really try to not overdo it. There is an old Latin saying: festina lente; which means 'hurry slowly' or 'more haste, less speed,' and I have learned this lesson first hand through the school of hard knocks.
There are days when I just want to blow off the exercise, but then I think that in the long run, as long as I don't overdo it, it will serve me well. In addition, I have to answer to the Rheumy, who asks me each visit whether I am doing the exercise she ordered me to do. Guilt is a really good motivator.
How about you, what do you do for exercise and how are you?
Paula
I was diagnosed this past March. Was started on 5mg prednisone. Before the prednisone my CRP was 16.8. One week after taking only 5mg my CRP was 3.5. One above normal. 95% pain and stiffness relief!!! I weened myself off the pred. In 2 1/2 months. I'm treating my PMR with supplements and foods for inflammation and immune building. After 1 month on the pred. I had terrible side effects! I also stay away from salty and sugary foods!! I'm up and about. The pain and stiffness is tolerable
That's good to hear, Tinaj. I'm new to all this but I don't think I've ever heard of such a low dose as 5 mg as a starting dose. Was that prescribed by your GP?
Hi Lingran, I'm a nurse and am well versed on what prednisone can do to our bodies. My rheumatologist wanted to start me at 15mg daily and I refused. He said he could only go down to 10mg daily. When I got the med. I thought I've been in pain for the past 3 wks. So I'll just see if 2.5mg in the am and 2.5mg in the evening would do anything. Bingo!! It did. I think I have somewhat of a mild case. I still have pain everyday but it's tolerable.
😌
HI Paula,
Sorry for delayed answer.
I have less eventful history, but somewhat similar. I too have old knee injury from playing soccer - torn ACL. Although I had reconstruct siurgery, that knee was never as good as the other one. It is less flexible and weaker and more prone to inflammation. In fact this is my "cannary in the mine" when it comes to PMR inflammation. It usually reacts first before anything else, so it gives me a warning to adjust my pred dose. On a flip side, I am realtively lucky and dont have any other health issue.
I do exercise a lot. Walking a dog ( 5-6Km/day) , swimming and mountain biking I keeps me in shape. In all these activities I started slow, but increased intensity and leangth gradually, so that I am at or very close to pre-PMR level.
I do belive that exercise is very important in PMR recovery if done at proper intensity level. Given time and proper training body will adjust and get stronger.
I started thread " PMR and Exercise - ..." in which I kept a log of my progress from the begining (January) until now. Here is the link if you are interested