So after using the seemingly useless rheumy for 5 years I have changed to a new one. What a difference. Very efficient, scarily so, not a lot of bedside manner or chat but seems to know what she is doing.
In April I had a severe dose of bronchitis and my sedimentation rate and CRP results were high. Sedimentation rate was 87 and CRP 39.3.
At my first consultation in July she ordered a full spread of blood tests. Sedimentation rate was 57 and CRP was 13.7.
Next step was to send me for a PET scan on 5th August to check out my arteries. I’d never had that done previously. No problem there. However the PET scan showed some lung problem (not cancer) regarding the infection.
She advised another course of antibiotics and to see her on return from our trip to UK.
So I saw her today and feel as if I’ve been hit over the head! It seems that she is of the opinion that it is unlikely that I have had polymyalgia although when I asked her directly if she thought that was the case she didn’t want to confirm it. She thinks that it is more of a problem of infection in the lungs. Interestingly I had a bad bout of bronchitis in the January before I was diagnosed with polymyalgia the following June.
She seems to think that any pain that I have is more a “normal” rheumatic pain for someone of my age. Her advice is to see lung consultant and to diminish the dose of steroids. Her advice is to reduce by 1 mg a month until I am down to 1mg. At the moment I am on 5 mg. To contact her if any problems otherwise see her with blood test at end November.
Confused in France!
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Deemar
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Why do they assume that any pain you have in your 70s is "normal"? I think it is more likely to be undiagnosed PMR or something!
It is possible that the lung whateveritis could be the cause of your symptoms - but it is almost certainly the cause of the raised CRP.
It's a bit like the first one you saw - who thought it couldn't be PMR because she could move your limbs without causing you pain. Do anything to my limbs and it doesn't hurt ...
When I first had a GCA scare, the doctor at the eye clinic thought of doing s PET scan but concluded that as I had been taking pred for over a year there was no point.
So, 4 years in from this curve ball. Why 4 years.? Well we moved house which was stressful and time consuming and now live very happily in an apartment on the edge of small town. Still in France. Second reason is that my husband was diagnosed with oropharyngial cancer. So major surgery followed by chemo and radiotherapy. My problems faded into the background. I believe that the rheumy was completely wrong in retrospect and I never want to see her again. I managed a year or so without any pred but of course the pmr crept back. My lovely gp has helped me manage things this time round. I certainly never want to see that woman again (the rheumy). I started with pred again at 10 mg and made it down to 6 mg over the course of a year or so. Last November we decided to reduce by the slow method. By the end of January I was down to 5 but the pain was coming back. I went, with my GP.s advice to 10 mg for 5 days before stepping back down to 6mg. Which brings us to last week. I’ve always tried to make sure I have a daily walk and my routine has been to do all I need to in the mornings and take it easy for the rest of the day(I am 80] . We went away for 3 days last week and I did a lot more walking than normal and now my legs are very painful. The pain improves during the day but I’m loath to carry on walking, 20/30 minutes a day at the moment. I shall have a blood test and see my GP agin but would like your feedback before I do so. During this period my CRP has varied between 9.4 and 8.7. Cortisol 11.7 to 13.9.
It does sound as if you overdid it a bit with the walking and you developed DOMS - delayed onset muscle soreness. You need to get over that before starting walking much again though a bit of gentle pottering about should help a bit.
For the CRP it’s less than 5 but I have never been that low. For the cortisol morning with no food it’s 5.27- 22.45. Yes, I’m not going out for a walk as such but am up and down indoors cleaning, cooking etc.
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