How often do you have your CRP/ESR blood tests, and do you have to continue having them ongoing once you get to 0mg and possible remission or just when you get a potential flare after reaching this point?
Blood tests: How often do you have your CRP/ESR... - PMRGCAuk
Blood tests
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Liby57
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DorsetLadyPMRGCAuk volunteer
It probably depends on your illness, you and your doctor.
Early days (GCA) after initial fortnight when I had them done almost every day (for obvious reasons if you know my background)..
I had them done once a month, and based on them and how I felt my GP & I decided whether to taper or not. that continued for the first year until I changed surgeries and it was down to every 2 or 3 months (agreement between my GP and me).
Some people don’t seem to get regular tests and rely on how they feel which is fair enough ( and through COVID it has been difficult to get them anyway for some), but my view it’s used full to know what they are roughly, then you can gauge the change in them should that occur.
But you must remember, how you feel is the most important thing in tapering or increasing if you think you are flaring - the blood markers are secondary to any decision . Plus they often lag behind symptoms, or can be raised fir other reasons, not just PMR or GCA.
Also have a look at this FAQ- healthunlocked.com/pmrgcauk...
Thank you, I am now down to 0mg. I reached 0 mg 3 weeks ago. I have had a couple of flares as my arms are week and I sometimes have pain when trying to lift my arm and numbness and tingling in my fingers but my markers show normal. My GP thinks I have may have developed tendinitis and is keen to get me off Pred. . I’m waiting to see my rheumatologist in 3 weeks time. I have had my bloods taken almost every week for the last 2 months . I appreciate that reducing to 0mg in a year is ambitious but my GP is keen to get me off steroids and due to the adverse affects of long term use so am I.
You and your GP may be anxious to get off the Pred, but to be brutally honest, I doubt if your illness has gone into remission within a year. It may have, and I hope it has, but it’s unusual if it has.
If it hasn’t hit into remission then your symptoms will return , and a return of inflammation may well cause you more long term issues than the steroids ever will.
However, you need to discuss this with your Rheumy- which I’m sure you will.
I appreciate that very few people go into remission in a year, I did very slowly once I reached 8 mg and took your advice to only reduce by .5 mg at each drop. The thought of a relapse does concern me and so does the Pred. I have had the most horrendous side affects while taking Pred.
Can I ask what side effects? We have come across most of them on here, and may be able to offer help if you need to go back on steroids.
I started off with severe anxiety and depression, terrible headaches. By the time I reached 12 mg I had dry skin, my hair started to fall out and became very thin. By the time I reached 9mg I developed carped tunnel, swelling and stiffness in my hands and could hardly hold a pen. Horrific pain in my bicep with shooting pain into my wrist. I had pins and needles in my other hand, GP thought it was a trapped ulnar nerve. I put on lots of weight and developed moon face , swollen ankles and generally felt ill the whole time I was on Pred. I have had so many tests, scans, MRI, colonoscopy, endoscopy etc. I’m really hoping I don’t have to go back on them.
Carpal tunnel is more likely to be part of the PMR than caused by pred which is used to treat it sometimes.
There are a lot of us on the forum who have avoided weight gain on pred or lost weight we had put on by cutting carbs in our diet. It really does work. A low salt diet is also helpful when on pred as it reduces fluid retention - contributing to swollen ankles.
Sounds so similar to me most of the above ! Plus sweating profusely thrown into the mix !
See FAQs - post and advice on sweating - healthunlocked.com/pmrgcauk...
As PMRpro advises most of the effects you mention are very common, and can be treated/managed including the anxiety/depression…and are listed in Patients Information Leaflet …and the pain described probably due to illness and not enough Pred.Sounds as if your GP unfortunately knew little about PMR nor steroids, and maybe instead of looking for other reasons for your discomfort should have concentrated on your illness and helping you through the treatment.
Only 1 in 5 patients is able to get off pred in a year. And they remain at a higher risk of relapse. It is a chronic autoimmune disorder - like most of them. Unlike most of them it does often go into remission permanently - but no doctor can dictate the course of the illness and how long or how much pred you need. About half of patients need pred for more than 6 years, though usually at a low dose of IRO 5mg. The pred cures nothing - it is a management strategy.
My doctor can . She says she thinks I know longer have PMR because I have been on Pred 3 years 😂😂😂😂😂
I was diagnosed with PMR maybe 4 years ago. Had never heard of PMR. My GP put me on 40 mg of prednisone and could not believe how quickly the pain was gone. It was like a miracle as it was difficult to get out of bed, take a shower. etc. I was referred to a rheumatologist and in my opinion he is great. Originally saw him monthly and blood tests then also. He began a slow taper and for past year have been on 4 MG daily. I now only see him every 3 months and same timing for blood tests. Of course he would prefer I could stop prednisone but never pressures me to do that. And for personal information I am 82 y.o. and live in U.S. I don't recall how I found this forum but it has been extremely helpful. I am shocked at how many people have PMR and wish I didn't but am thankful for information here and the doctor who continues to help me.
What a brilliant GP you have, i like mine but i now feel im just left with a bag of steroids to sort it out myself !! Still going through the motions of getting to 6 and no lower !
Well maybe 6mg is what you actually need…..so if it is, don’t try and push yourself lower.
As said many times, you are reducing not relentlessly to zero, you are trying to find the lowest dose that gives you relief and controls inflammation.
One day you will get below 6mg, but not until your illness will let you. Give yourself a break for a month or two, then try again using a slow taper - this is just one version - there are others in the FAQs -
healthunlocked.com/pmrgcauk...
Thanks, think I will take your advice and have a break at 6 for now .😊
Most of us, have been through Hell on trying to follow the fast get off the predisone, because it will hurt you from the docs.........the truth is, it is rare to find a doctor that really understands the disease and how everyone is different. It has been said over and over again, that everything plays a part in autoimmune disease. Our hormones in crisis,s stress, disease, over active life style, loss of friend or family, weather, pandemic , weather and much more. We that have had the diseas for a long time, and have failed going down too fast or not listening to our bodies, know that slow and steady wins the race, and it is beautiful to be slow and steady. You start gaining hope back, and enjoy your friends and family, and can do more..... before this finding this site, we were lost, searching all the time for answers. This forum is truly a gift and inspiration, and heart filled hope!! All of us want to put disease behind us, but it is not that simple. Autoimmune disease is not typical, so learn to listen to your body, slow up and I dont know if Dorset lady shared with you her taper log, and what was going on with her during her taper, but it really really drove it home for my wife and I. Do not chance a flare, the longer you have the disease the flares, seem harder to get your strength back on the other side, and no one wants to go back up on predisone. We have learned it the hard way. God Bless your day, and always remember if you are having symptoms, do not go down, it is all about homeotasis in your body, and you can not make your body except what your mind or the dictation of a doctor that is pushing for faster taper down. Trust in a slow and steady method. Its okay to stay at the same milligrams for a month or more, if it is going to get you to the finish line, and that is all that matters really.
Thank you so much for your reply, over the last few days i finally realized that my illness is not going away over night. Im not going to battle it anymore and put so much pressure in trying to rid myself of Pred asap !! So i have now truly taken the advice of many fantastic people on here who understand . From now on im taking it very slowly and hoping that this way will get me to where i want to be ! As said by me many times before thank you all for caring and helping me on my journey. Im starting to feel better already !
PMRproAmbassador
I have it looked at once a year by the GP or if I see the rheumy. But they don't mean much for me, rarely out of normal range so I object to having to pay for them!!
One recommendation is just before a reduction step - to be sure that there is no hidden increase in inflammation going on and if they are rising it is then a good idea to check them a few weeks later on the same dose to see if there is a trend. Increases because the dose is now too low won't appear quickly so the delay makes sense.
After zero pred there isn't much point having them done frequently UNLESS you have aches and other symptoms that you think might possibly be the PMR raising its head again. It isn't unknown for that to happen after a few months - 1mg may have been too much but zero doesn't manage the little bit of inflammation and it starts to build up.
Thanks for your reply. I’ve had my bloods taken weekly for the last couple of months. Down to 0mg but had a couple of flares but as you say is it PMR or something else. I’m waiting to see my Rheumatologist.,My GP thinks I may have developed tendinitis. GP keen to get me off Pred and so am I due to the adverse side affects of long term use.
The trouble is - it is the PMR that dictates whether you need pred, not the GP. And the long term effects of inadequately or not controlled PMR are also a consideration. It isn't as simple as pred bad, no pred good. I've been on pred for 12 years, about half of that time between 10 and 15mg. No identifiable adverse effects. Certainly no osteoporosis (no bisphosphonates either), no diabetes, no cataracts, gained weight (with PMR) and lost again (while on pred), skin reasonable. and have been able to live a pretty normal life.
That’s certainly interesting that you have been on it for 12 years without side affects but I suppose everyone reacts differently. 12 years is along time to be on Pred, are you on a low maintenance dose?
Unfortunately not - I have been down below 5mg a couple of times but then had big flares of disease activity - not flares because of overshooting the dose of pred I need - which meant returning to 15mg, the same as my starting dose originally, and they tend to take at least a couple of years to settle down again. I am a sole carer so have to be able to function.
I have been on 15 mg for the last 11 weeks as my ESR was 52 and my CRP was 59. Now 2 and 5 respectively. I was previously on 40 mg last year with suspected GCA. My rheumatologist wants me to drop to 12.5 for 4 weeks and then to 10 for another 4 weeks. Thereafter reducing by 1 mg. This is due to the fact that I am type 2 diabetic on ever increasing insulin injections and tablets plus a low carb diet, to try to reduce my soaring blood sugars due to the steroids. I have now been prescribed a new weekly injection of a drug called Trulicity supposedly to wake up my pancreas. Have you heard of this or am I now just a 75 year old guinea pig. Thanks in advance to our wonderful wise woman aka PMRpro.
Not that new, been around since 2014 so no, don't think you are being a guinea pig 
I helped caring for my mom who had Alzheimer's and later cared for my dad until he passed at 86. Do you get temporary relief now and then?
He wasn't considered to be in need of care last autumn - silly woman suggested I let him drive so he "kept his independence"!!! I asked her did she really think I would entrust my life to sitting in the passenger seat with someone who was so frail he'd not be able to manage an emergency stop!! No care money, no nothing. He is wobblier now - maybe this time!
If it's any encouragement to you, I was at around 2 mg for about three years with no adverse effects. Should have stayed there as I did eventually taper to zero and within a month had to restart pred and have not done so well since. So long term pred, at a low enough dose, could control the symptoms of PMR and yet have no discernable side effects. The key is, as I've found to my cost, figuring out if you can get off pred, as in fact most PMR people do eventually, or if you are going to turn out to be a long-timer. And unless there is something untoward showing in bloodwork, the most sensible doctors treating PMR will treat the symptoms not the numbers.
Probably in our pinned posts or the FAQ there is a link to a study showing that patients on long term low dose pred suffer no adverse effects beyond what is expected with normal ageing.
This one?practicalpainmanagement.com...
The other article has gone AWOL, new management ...
I’ve Had PMR For two years three weeks on 0 pred now seeing rhumey tomorrow not sure what to expect Not had any blood tests since the start have been left to manage on my own, fingers crossed it’s gone
I am on 0 Pred after many years, - up to around 50 at my worst, but have blood tests every 6 months to check liver markers as well as inflammation. I am still on Methotrexate & RoActemra, hence concern over liver. I had many of the side effects described by you, and just had to get on with it all - school was fun! but all good now - flares are not as acute as they were and only once or twice a year. I have resorted to a few doses of Pred when things get bad...5 down to 0 over a week.....
Thank you
I have my blood test taken every 2 months just before I see my rheumatologist. This has been ongoing since my diagnosis in August 2020. So far,so good, my inflammation levels are low normal.
Glad to hear your markers are low. You are very lucky to see a Rheumy every 2 months. I was diagnosed June 2020, saw Rheumatologist once and was supposed to see him in Dec. Still waiting so resorted to going private.
I just want to send my good wishes as like you I suffered extreme side effects from pred. Worst were a tight band around my chest and palpitations that did not go till down to 0. Also skin was weak, some fell off my shoulder leaving a permanent scar. And digestive probs were made worse with more meds. Felt totally ill the whole time. Disinterested doc so had to plan my own regime. Took 16 moths to reduce. Been on 0 for 13 moths. Went backwards when I cycled to much “to get fit”. Eventually learned that pacing, loads of rest and nutritious diet are musts. Did well again until jabs which floored me. Building up again. My knees are. Weak and achy and stamina gone but steadily building up. Have not gone back on pred at any time cos none of this is as hard to cope with.
Like so many people have said “listen to your body”. Mine says “keep off pred”! Good luck .
Thank you for your best wishes. Like you the thought of going back on Pred is really not something I want to do but I do understand that for some this is the best option.. I have had a couple of tolerable flares since I reached 0mg. Waiting for a call from GP this afternoon to discuss. Best wishes to you too.
My Dr has twice a year now that I’m off prednisone..just part of what he’s checking for as a general physical.
I am on Actemra 162.5mg SQ every two weeks, so I have CRP/ESR, CBCdiff, Comprehensive panel, Lipids done every 2 weeks. I can not receive the shot if certain labs are not in range. I all depends on what your meds and circumstances are.
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