I do not understand the significance nor the ideal frequency of blood tests for inflammatory markers for monitoring PMR.
I realise that we are all different and we may need blood monitoring and other tests depending upon how settled we feel and/or at what stage we are in tapering etc.
In my case ...
I had classic symptoms at the start of October 2015 and was (luckily) diagnosed four weeks later at the start of November and at that point started on 15g Prednisilone and am currently on 14g Pred. About to reduce to 13.5 tomorrow and I'm feeling ok.
Blood tests were taken at the start of November (around diagnosis and start of Pred) and then again on November 20th. Unfortunately I have no record of readings.
When do you suggest I need another blood test ... and for what reason ?
Many thanks in advance x
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Polylinc
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Initially I had blood tests monthly and now have them three monthly. I ask for a printout of the results. I would have thought they could do that for you for last year.
Speedy Gonzalez me! I must admit I do organise my blood tests myself when I think I should have one. I just phone up and book it then when I am there the blood nurse and I decide what blood tests we fancy and she does it. No one has questioned it so far. Perhaps I am pushing my luck or the doctors are too busy to be bothered.
It all depends - did you have raised ESR and CRP levels? If so, then it would be useful/sensible to have them repeated at intervals, either monthly/2 monthly as a regular thing or before/after a reduction. If they follow a pattern, are raised initially and fall steadily with pred while there are no symptoms it is a sign that the pred is doing something. If you are lucky, they will provide a signpost. While the blood results should never be the trump card in reducing/increasing a dose, they may prod you to note that, while you don't have any symptoms YET, the underlying trend of the results is upwards. One raised value may be due to other factors - a cold, chest infection, injury - but when for the last 3 readings the level has been creeping up it is a sign to at least not reduce further for the moment and possibly to go back to the previous dose for a while.
I personally think that the starting dose should be maintained until the ESR/CRP have fallen to a normal range value (under 30, 20 really) but at the very least to the lowest YOU are going to get and be steady before you start on your odyssey to a lower dose. Then you are looking for the lowest dose that gives you the same result as that starting dose. The initial dose clears out all the existing inflammation, you then look for the lowest dose that manages the daily new dollops that appears in response to the body shedding cytokines in the early morning.
Your doctor will have those readings - ask nicely for them and draw a graph or keep another record. A diary of dose, blood test values and how you feel/symptoms going/reappearing in some form can prove invaluable when putting your case to a doctor for staying where you are, reducing or increasing the dose. You forget what happens!
Everything else in the blood test department SHOULD be done every 6 months at most - nothing dramatic, cholesterol (if it bothers you, I wouldn't take a statin again if you paid me to) but definitely blood sugar, electrolytes, calcium, full blood count etc. BP needs to be checked at intervals and weight (though you will know if you are putting on weight!).
Regarding your question about raised CRP and ESP levels ...
I really don't know as at the time I felt SO unwell ... I remember I was crying as the blood was being taken and I totally forgot to ask the GP (and she didn't offer the information) when I had the subsequent visit to her.
I don't even know what those levels mean, but I will ask for them retrospectively.
I DO keep a diary/notes of medication taken and dates of blood tests,
BP taken etc. and I now realise with all that is going on that it is SO easy to forget a detail that could be very important.
Thank you for your continued "mine of information"
ESR is erythrocyte sedimentation rate - the speed with which red blood cells settle to the bottom of a tube when filled with blood. This changes when there are more of some proteins in the blood - and that can happen when you have inflammation present somewhere.
CRP is one of those proteins and increases in inflammatory states.
Neither of them is specific for anything particular so they're just indicators. They will also rise if you have a cold or chest infection.
As far as you are concerned they can be just numbers - but for most people the higher they are the more inflammation is there. About 1 in 5 people though never have a raised result. As long as they continue to fall, and having fallen stay at the low level, things are probably OK. But if they start to creep up - keep a close eye out, it may be a flare. A single raised value is fine - but repeated ones over a period of time are not.
If I can't pass on the things I've learnt in a lifetime as a medical scientist, 11 years of PMR and "talking" to hundreds of PMR/GCA patients on the 3 forums in the last 6 years I'd be a pretty poor apology for a human being.
So ... piglette, I guess you would recommend it for a read ?
Incidentally ... I declined the offer of being prescribed statins, must be well over 10 years ago ...
When my local village pharmacy told me that the local authority had suggested to local GPs to try in time, to have the majority of the population on statins !
My brother DID accept them and had lots of unforeseen and upsetting problems before coming of the drug.
My father had real problems with statins. He became almost zombie like, eventually a new GP let him have a trial of two weeks without them, he became the life and soul of the party. No one could believe the transformation..
As others are saying there are many books out there that tell the truth about statins and how we are all being conned by the drug companies.
This is a subject close to my heart (pun intended) as a cardio actually wanted to continue statinating me despite my body having a massive reaction to these drugs.
Here are a few titles to be getting on with:
The Great Cholesterol Myth.
Stephen Sinatra
Cholesterol Clarity: What The HDL Is Wrong With My Numbers?
Jimmy Moore.
The Great Cholesterol Con.
Malcom Kendrick
Lipitor Thief of Memory. and The Statin Damage Crisis. and Statin Drugs Side Effects and the Misguided War on Cholesterol.
All 3 by:
Dr. Duane Graveline
(This guy is an ex NASSA astronaut and doctor on the space program, His story of what statins did to him is incredible.)
And if you want to look at diet:
Trick and Treat: how 'healthy eating' is making us ill.
Barry Groves
Fiber Menace
Konstantin Monastyrsky
These are all available for kindle on Amazon, and are readable on PC, Mac, Android devices and i-phones and tablets using the kindle app if you don't have a dedicated kindle book reader. Generally cheaper than a hard copy book.
Just download the app, then buy the book.
Very basically, if you haven't had a cardiac "event," are over 50 or female. Statistics show that statins will NOT increase you life expectancy. If you are under 50 or Male they are likely to extend it by, on average, 7 DAYS.
The above books are just the beginning. If you are interested there is a wealth of information out there.
These 2 books are by author David Evans who is not a doctor and has no axe to grind, he just collects and collates information from scientific papers and puts it into layman's terms.
Statins Toxic Side Effects: Evidence from 500 scientific papers (Cholesterol) David Evans
also,
Cholesterol and Saturated Fat Prevent Heart Disease. David Evans
Beekaykay has said pretty much all I would have said so I'll reiterate it rather than repeating it.
And this week there is actually a study suggesting that they CAUSE cardiovascular problems because they can lead to hardening of the arteries due to deposition of calcium in the artery walls.
You'd be surprised probably how many DOCTORS won't take statins...
I feel sure that many people on this forum will be very interested in what you and others have said and will find your extensive book list extremely useful.
Being on a 40mg starting dose for both PMR and GCA, my bloods were monitored every couple of weeks initially to ensure that the steroids were doing their job in reducing the inflammation, mainly as a safeguard to protect my eyesight, and then every month and before any reduction in dose. Whereas some PMR patients never have raised blood markers, I considered myself lucky to have had considerably raised markers at diagnosis because for me they proved a very useful guide during the reduction process, especially as I never became pain-free PMR-wise down through the doses, as some lucky people do. I was also lucky to have finally found an excellent rheumy with a special interest in PMR/GCA and not afraid to keep up with regular blood tests, after my first rheumy failed to diagnose me for a year.
So if you are someone who had raised markers at diagnosis, then ideally the ESR and CRP tests should be repeated monthly just to ensure that the results are still heading in the right direction - in other words you're overdue a test now if you haven't had one since 20th November! The results should then be taken into account - always together with your symptoms at the time - and used as a helpful guide to reducing. As you get lower on the dose, the blood test can be slowed to every 2-3 months.
"Should I have been referred to a rheumatologist by now too?"
A leading expert on PMR/GCA mentioned at one of our support group meetings that he considered everyone should have at least one appointment with a rheumatologist. However, if you are satisfied with the care you are receiving from your GP - and it sounds as though you are - then my advice would be to stick with her. Your GP diagnosed you promptly which is more than can be said for some of us, plus you are reducing slowly but surely under her care, so hang on to her and, hopefully, things will continue to go smoothly.
Polylinc I get the impression that treatment protocols vary from country to country. I am in a Canadian province and I have only seen my GP. She was going to refer me to a person who specialized in osteoporosis but when I was adamant i wasn't going to be taking medications for my bones she withdrew that. I also self-referred myself to my eye doctor who happens to be an ophthalmologist, and I was the one who asked for a bone density scan. I have only had bloodwork done once since June diagnosis, and again that was at my request because I wanted my blood sugar checked. At that time she also got my inflammatory markers and iron level checked. Long story short - no matter where you are, you probably have to be your own advocate.
If you are doing well/ on a similar wavelength to your GP don't worry about it. I saw 2 rheumies at various times who were as much use to me as a chocolate fireguard. One insisted my hand and knee pain was OA, she could "feel it" - no sign of it now 10 years later. The other wanted my PMR to be anything but PMR and came up with yet another option every time one was ruled out by tests and was totally disinterested to the miraculous change in 6 hours in response to 15mg pred - something top experts would consider fairly confirmatory of PMR. He wanted to put me on sulphasalzine - where you can't go out in the sun. I was about to move to Italy. The rheumy and GP here are perfectly happy it is PMR, the GP provides the requisite prescriptions.
Much similar answer to others. I started on 80mg (late diagnosis of GCA -Long story blah, blah, blah) so bloods were tested weekly at start. Once I started reducing, they were done monthly, and if satisfactory I reduced - down to 15mgs. Then tested every 2 months. Since I have been below 10mg, and with different GP they are done about every 3 or 4 months, and he leaves me to reduce according to symptoms mainly. I always ring and ask for results - both the GPs comment and the actual readings for my own records.
As PMRpro says, other blood tests are done at six monthly periods.
To start with they want to make sure that inflammation is under control, and then subsequently kept under control - however you have to remember that other things can cause them to rise. i.e stress, colds, too strenuous exercise etc. So best to consider them in tandem with your physical symptoms.
Many many thanks DorsetLady and so much at my information fingertips now
Luckily I have been left now to manage my own doses according to how I am feeling but ... It appears I may need to request blood tests and BP tests too,
Rather that wait for GP appointment (next one two months) and her "giving me permission". I will get onto that ASAP. Thanks again
I hope you are feeling well- I am interested in your post as I was diagnosed in Oct PMR last year put on 15 Pred- now doing Ok on 13 Pred- I have had 2 blood tests so far in addition to the one I had on diagnosis / last test had normal levels so GP was pleased - shows Pred doing its job! She said I would have another test when I reduced by 1mg - 2 weeks after reduction to see if blood had adapted to reduction.
I hope your reductions goes well- it would be interesting to keep in touch as our diagnoses same month last year- I am still adapting to life with PMR but trying to carry on with lifestyle
Good to hear from you as we appear to be at a similar place in our "journey" I wonder if we are a similar age ... I'm 71
As far as the PMR is concerned I am feeling ok and so relieved I don't feel as I did in the early stages pre diagnosis, however I now appear to have a heart condition ... So lifestyle adapted a little.
I am not sure it has anything to do with PMR but could be a side effect of steroid medication ... there are so many side effects !
So ... I am having to take things steady until my appointment with a cardiologist mid March.
Hopefully when the better weather arrives, we will all be feeling some improvement, fingers crossed.
Thanks for your reply and this forum is so good - I dnt know how I would manage without you all- if I have a issue someone wil, know and give welcome advice to get me through it.
Yes I know what you mean feeling so dreadful before diagnosis it can be quite a relief to have a name for it.
I am sure your heart condition will resolve itself when you have been to the cardiologist for advice. I am 63 and my husband is 65 - he has just been for his 65+ health check and has to have a ECG next week - he says he is not worried but I know he is really. I said to him if it was a serious issue he would be in urgently and he seemes to agree.
I have been accepted for PMR research at Leeds into effects of steroids on muscle which will involve MRI, bloods etc and muscle analysis. I am quite looking forward to meeting the researchers and will post any interesting findings on the forum.
Meanwhile, hoping things go well for you amd thank you too for taking time to write.
What is it? I must have developed atrial fibrillation quite early on in PMR. When it was finally identified and treated (long story, I'll tell you if you want) I realised these "funny feelings" had also been a/f, not just "palpitations". The cardiologist thinks it is due to the autoimmune part of the PMR having damaged the electrical cells in the wall of the heart. It certainly happens in RA, no reason why not in PMR.
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Has anyone been diagnosed for PMR under 50 that didn't have inflammatory markers in their bloods?
PMR with normal inflammatory markers- GP says not but symptoms agree
Is it possible to have inflammatory markers controlled and still be experiencing some stiffness and pain? 
Inflammatory arthritis 
infection interfering with marker numbers 
