I have had Polymyalgia for three and a half years now, and after many ups and downs am now on 6mg Prednisolone together with 1 Lansoprazole tablet per day. I have been having blood tests every 3/4 months, and have always had both CRP and ESR checked. Had a blood test done on Tuesday, and saw that there was only a result for ESR, which was 6, so pretty good. I had my vitamin D level checked as well, as my GP wanted me to restart Alendronic Acid and Calceos again, after six months of not taking it. I have been upping my yoghurt/ cheese and whole milk instead. I said I would see what the result was to see if I needed to take them, which I thought was the better way to go. My D level result was potential risk at 32. Had a phone call from a different Dr this morning who didn't seem to know much about Polymyalgia, and he said that the CRP level is not important, and the ESR level was good, so I could start coming down on my steroids. My last reading was 34 for CRP, which for me is quite high, and I have insisted that I have another blood test to check my CRP level before I try to come down again. Got to wait until the middle of June for that!! As this shows how much inflammation I have in my blood I don't understand why he thinks it is not important. I have managed to get some two and a half MG Prednisolone tablets, and so the plan once I have my CRP result is to use one of those plus three one MG ones to try and come down to five and a half MG by the slow method.
CRP/ESR and calcium levels: I have had Polymyalgia... - PMRGCAuk
CRP/ESR and calcium levels
I am looking forward to hearing a reply from someone who knows the answer. I have the same problem, ESR below 10 and CRP keeps going up and is now at 25 ( high for me) which my GP says is of no consequence but advised me to stay on 8mg for another month! I absolutely hate being on steroids, as most people do, but it is affecting my existing mental health problems and I have difficulty dealing with weight gain/ moonface even although I am on a strict low carb diet. I’m sure help will come along shortly!
Strange - most doctors would say the other way round - CRP is more important than ESR but maybe he has read the paper that says ESR is often more meaningful than CRP in PMR.
But the CRP being raised, and rising despite being on pred, SHOULD be a trigger to make sure there isn't anything else going on. It is a very non-specific marker - but then, so is ESR, Trends are important - so how do they compare with previous results?
Get yourself some vit D tablets - at least 2000 IU per day to try and raise the blood level. I take 4000 IU and that just keeps my level in the acceptable zone. The amount in combined supplements is hardly worth it, nowhere near enough.
So what are you saying PMRpro? That purplegloss is just vitamin D deficient?
No - but that is easy to remedy and you can't do it reliably without supplements - and you can do it yourself. In the context of bone density it doesn't matter what your diet is like or even adding Calceos/AdCal with their very low vit D level if your body stores of vit D are low - you need to get them up and as quickly as you can.
I no longer take calcium supplements because the cause me bladder problems - but dietary calcium plus a decent dose of vit D seems to do the job for me.
Having been on Steroids for PMR back in 2018, I stopped them back at the end of 2019 but could not rid of the pain in my upper body. Finally a PET scan was done to find it has turned into Vasculitis, so back on the steroids to control the inflammation.
So it seems one Autoimmune problem can turn into another, checking CRP and ESR was not telling them I had Vasculitis.
I thought PMR was a kind of vasculitis?
PMR IS a part of a spectrum of vasculitis: PMR/LVV/GCA (LVV is large vessel vasculitis) and PMR can be a symptom of all 3 versions.
academic.oup.com/rheumatolo...
The text is a bit heavy - but Fig 1 illustrates the overlap very well. About 1 in 5 patients doesn't have a raised ESR/CRP - and relapses can be totally different from a previous episode.
I know my diagnosis is LVV. From the symptoms on the article I have lost weight - down 2 stones from 14 to 12 (steroids did not make me gain weight previously), pain in my shoulders and back and Raynauds. The hip pain from PMR has gone away. No headaches or Jaw Pain.
I do run quite a lot and the only thing I have noticed is that muscles around my knees hurt more than they have and seems to me that it is like they are not getting the blood supply to them properly, but there is no proof of that and it could just be my 62 years of age.
If I'm at even sightly too low a dose my around my knees aches in the mornings - like the sort of toothache that nags in the background. It is really strange! And it isn't related to doing too much the day before.
It seems we cannot get explanations for all the aches we get and I presume our bodies do slightly different things in response to disease and mediciation. If I forget to take the steroids than the pain comes in my shoulder. I have been told I have arthritis in my right knee and it does crack painfully sometimes when I get to move in the morning.
My right knee did nag for a while around the mid-line on the inside but I was told that was due to the arthritis.
Dear Purplegloss, I don’t think I can add much to the other replies. I was wrongly diagnosed with polymyalgia so have no experience of steroids and how they affect osteoporosis. I have taken Alendronic Acid for probably 30 years, I am 90. It has kept my bones in fairly good condition, only one very minor wrist fracture. As far as I can tel it has had no side effects except perhaps for my throat which I have to clear a lot. I did have a year off as advised by my doctor. I hope you can sort it out and are free of the polymyalgia before too long.
Thanks everyone for your contributions. I have decided against taking Alendronic Acid, but will be taking vitamin D tablets, which should help. As I said I have to wait until the middle of June before I can get a second blood test, this time it will be for my CRP levels. If good I will try coming down from 6mg to 5 and a half mg via the slow route.
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