Is it usual and advisable to get a blood test for CRP after every taper? At the moment I'm attempting to taper every 5-6 weeks, and my rheumy wants a blood test a week after every taper. The problem I'm having is that I'm finding it difficult to get the actual CRP figure. My rheumy/the hospital won't give it to me, but says I'll be contacted if the result is abnormal. I can sometimes get it from my GP surgery, but it can take a week or two. I'm finding this stressful and worrying. I've read here that symptoms trump the CRP figure, so if I am feeling well and don't have any head pains (I have GCA), do I always need to get a blood test? My last blood test showed a rise from 2 to 9, which I learned during a meeting with the rheumy a week after the test - but was never alerted to this because my rheumy felt the rise was not significant enough. Or did he only actually see it on computer during the meeting? Until I get the actual figure I can't be sure that anyone is actually monitoring me! I had a relapse the day after the meeting, which may or may not be linked to the rise in CRP.
Blood tests and tapering: Is it usual and advisable... - PMRGCAuk
Blood tests and tapering
It’s so annoying when they won’t give you your results, l always got mine because l was on Methotrexate & it was important to know so l could make a decision on my next taper.
At my new surgery, the Admins can’t give us ‘Numbers’ only OK; High, Normal as they can’t interpret them, no but l can, so GP has to ring me!
Perhaps it is normal then not to get the results when you are on pred? And perhaps the solution is to take the blood test and not to chase the results, but taper according to how I am feeling?
But l think we should know, worth a chat with GP/Phlebotomist in best way to get results. If l have to go back on Methotrexate l need to know my results every month for my MXT Record Book.
Does your surgery have on line facilities for patients if so sign up for it
I can see all results after my GP has seen them
Book appointments
Order Medication
You do have a legal right to have copy's of tests
Hi yes we can do Appointment’s & Order Meds, l have to sign up for the next part but until recently l didn’t have any history to look at with being New to the Surgery, GP is very good & always rings me, l just like to ‘know’ everything!
I’ve got 7 years of history to take to my new Rheumatologist on Thursday! 😉
Me too
So often bloods are within guidelines but sometimes the lower end but where never informed that.
Their idea of ‘Normal’ or ‘Within Range’ may not be OK for us!
I always look at my results on line but have had my records transferred from my old surgery so all my records are on line. I think this is general practice and took about 4 weeks.I like to know all the exact figures and the new system that this surgery has shows everything in graph form- very good visually an can see everything at a glance! X
No online facilities unfortunately for seeing results of blood tests, only to order meds and book appointments. I did once call in and ask for a print out of the last blood test, and they were very helpful with that. The problem is the delay between the time of the test and it being available to view on their system. I have tests done at the hospital, and there seems to be a problem accessing the hospital system.
My Son lives in France & they get emailed their results the same afternoon with a note from the GP with any action if necessary or when to repeat the bloods!
Mine wont put them online. I usually get my results from dmard test. The first time i looked at a printout it blew my head off. But i persevered looking online and that helped me understand them.
My rheumy also seems to want to say its nit gone up enough to worry or whatever. I shuffle up to tbe computer and a good point and gawp. Its important to understand how your crp etc shift about.
HOWEVER, its not worth making yourself ill about it. The markers tend to lag behind so may not reflect how well or ill you feel at the time of the test. It may be that 9 is still in the "normal" range for that lab. Hope you manage to get the results from your gp. I just ask for a printout.
Yes, you are right that I shouldn't get too stressed over it. The CRP of 9 was highlighted in red on the rheumy's comp screen as being abnormal, so his idea of normal and mine don't tally. My GP also wasn't overly worried about it. I realise CRP is affected by other things apart from GCA, which is perhaps why they don't always want you to know the figure?
I dont understand why they dont explain them to you. I suspect that even healthy people gave some variation in their CRP for no discernible reason but they are not checked. My crp is 10 at the moment but that's the lowest its been and is at tbe top end of normal for that lab. Pmr and at 6mg. I think i would worry more if i had gca. Just because it involves the head and sight more.
That took 4 attempts to write. My bil was whatsapping me lots if picture and it kept whipping me out if HU...lost them all!
In my view it is excessive and potentially misleading. It is also giving you stress. Astonishing that they are withholding your results too.
I've explained during two meetings with my rheumy and in numerous calls to his secretary that I would like the CRP figures, but am told it's not hospital policy! Which is why I was wondering if I really need a blood test after every taper? Perhaps after every other taper would do?
‘Not Hospital Policy’ Rubbish we are entitled to all information (except if it could affect our Mental Wellbeing) under the Freedom of Information Act!
Have you asked at your Surgery as they usually can see Hospital Blood Tests Results.
I can get results eventually from the GP surgery. Presumably after the GP has seen them, and providing the hospital system can be accessed, which for some reason seems to be a sticking point until I end up speaking to someone who has the know how. What makes me anxious is the time it takes to get the results, when to my simple brain I should be able to get them the following day.
I’d question it. My own tests are about every 3-4 months. Pred alters the readings. I wish it was as precise as some doctors think. As you say symptoms rule.
re: blood test after every taper? Yes advisable especially for those with GCA risking vision loss need to be aware of significant increase in CRP/ESR from best value to head off a potential flare. My rheumy has set me up with an open order for CRP, ESR, glucose blood tests and I get tests monthly or after every taper step. I have a "my health" online account at my US clinic and get test results online within 24 hours.
re: CRP rise from 2 to 9 [mg/L]. That is a huge rise in CRP and I would stop or reverse the taper to avoid risking vision. A CRP around 5 to 10 mg/L is considered the limit between good and bad for those with an autoimmune disease but normal CRP for cardio purposes is maximum of 1-3 mg/L. My CRP was 87 mg/L on GCA diagnosis. Now is 0.80 mg/L and pred dose 5.5mg. [ESR is 6 mm/hr]
re: adjusting taper by ESR/CRP blood tests. UIOWA eye dept recommends those with GCA adjust pred taper based on best ESR/GCA results to avoid potential vision loss. Those with PMR can just use symptoms for taper. see: webeye.ophth.uiowa.edu/eyef...
"Thus, the most important fact to remember is that normal ESR does not rule out GCA. GCA is missed in a number of patients simply because of the universal misconception that every patient with GCA must have a high ESR.
C-Reactive protein (CRP): Our studies indicate that estimation of CRP (an acute phase plasma protein of hepatic origin) is a highly reliable, reproducible and rapid test. CRP reaches abnormal levels within 4-6 hours and can increase up to 1,000 times, and also shows a much more rapid response to treatment than the ESR. Unlike ESR, it is not influenced by age, sex or hematologic factors. It generally runs parallel with the ESR;....
I found that the most reliable and sensitive parameters to regulate and taper down steroid therapy were the levels of ESR and CRP, and NOT systemic symptoms. "
Sohan Singh Hayreh, MD, MS, PhD, DSc, FRCS, FRCOphth
Thanks so much for that info. I was dx with GCA 8 wks ago, CRP 110 and ESR 78. Started on 50mg for 4 wks, now trying 5 mg reduction every 10 days. We get online results for blood same day, ESR currently 16 CRP 6.2......Rheumy says not to chase numbers, go by symptoms, I agree with your analysis.... and maybe try to do both. So far so good, thanks again for the info
Hi
Early days with GCA I had mine tested about every month - on a Monday, with an appointment to see GP on Thursday or Friday. If I felt okay, and blood test re-iterated no problem, we agreed my next reduction! I got figures direct from GP.
When I moved to new surgery and was on lower doses, new GP said test only every 2nd or 3rd month, but so long as you feel okay continue to reduce monthly. Originally got figures from receptionist, but latterly they were on computer system.
As we always say, symptoms are the key, but if you have a long term illness it’s sometimes useful to have facts and figures as well - if you’re that way inclined!
It sounds like you worked with your GP and not a rheumy in tapering matters. I think I will talk over with my GP about getting blood tests done at the surgery rather than the hospital. Setting up a schedule for tests and follow up appointments in advance sounds helpful.
I saw a Rheumy twice - about 6 months after diagnosis- he looked at the tapering plan my GP and I had agreed on based on BSR guidelines (although it was amended as conditions dictated) - and mumbled something along the lines of “that looks okay”. I think he was a bit miffed because it had been diagnosed by an ophthalmologist not him!
If you have a sensible GP, and fairly straightforward PMR then you probably have a better relationship with them rather than a specialist.
I won’t say my GCA was straightforward- but the treatment following diagnosis was! Long story!
The linked research article provided by gifford7 says that with PMR you can rely on symptoms to taper, but with GCA it must be CRP and not symptoms. Have you heard that before? I have GCA, but not PMR. I had no visual symptoms at the start, and only worsening cataracts since.
I know people with GCA with "normal" bloods. Hayreh (the person Gifford quotes I think) is not infallible either. And since PMR and GCA are the same disease - why should it make a difference.
I found the article quite scary, even apart from talk of occult GCA and sudden loss of sight without symptoms. First, that symptoms don't matter, that blood tests are crucial when my rheumy doesn't alert me to a rise in CRP beyond "normal" and it can take a week or two to get a figure from my GP. Then that four years is the average time before "remission", and that GCA sufferers will likely be on life-long pred, which presumably also means life-long blood tests. You live with the hope that there is an end to this disease if it is treated with appropriate doses of pred. I do prefer to trust in symptoms and a general feeling of wellbeing, otherwise you could go mad with anxiety.
That is drivel - the only correct bit is the 4 years-ish which fits with most of the people I know well with GCA. And almost of them are off pred - some for 8 years or more.
But the pred is not TREATING the GCA - it is managing the symptoms until the underlying autoimmmune disorder that causes the inflammation and so the symptoms decides to burn out and go into remission which it does for over 90% of all patients whether PMR or GCA.
My GCA lasted about 5.5years - 18 months undiagnosed.
Been off Pred and in remission 2.&5 years.
re: Dr Hayen. link: "Living Legend in Ophthalmology - Prof. Sohan Singh Hayreh....
Professor Sohan Singh Hayreh MD, MS (Punjab), PhD (London), DSc (London), FRCS (England & Edinburgh), FRCOphth (Hon).
Professor Sohan Singh Hayreh is a clinical scientist, and has made multifaceted, exhaustive ophthalmic research contributions in the most important blinding disorders since 1955."
I think Prof Hayen's point regarding prioritizing CRP/ESR test results for GCA is because the consequences of ignoring elevation can result in dire consequences;
vision loss and blindness, GCA stroke, aortitis with heart murmer and possible aortic aneurysm rupture. He has seen patients with GCA induced vision loss for many decades at the UIOWA Medical Center, top ranked in opthalmology, above the Mayo Clinic, by USNews.
Well, I had GCA only, and always went by symptoms when I reduced. CRP & ESR usually corresponded with how I felt so never any conflict.
As PMRPro says many patients don’t have raised markers, so how do they judge the level of their illnesses?
By the way, the worsening cataracts are due to the Pred, not GCA.
My raised markers to 9 corresponded to a couple of weeks feeling really washed out, plus completely stressed out by a frustrated meeting with my rheumy who appears clueless. I feel more confident about relying on how I feel, and will try not to get so stressed out by blood test results. I realise the cataracts were caused by the pred, and so was really grateful to have them done.
I would say a rise from 5 to 9 was significant and asking for another check a week later.
They are your results - I'd be insisting on a notification sooner - but it doesn't really matter and don't stress.
After I upped my pred dose (to 20mg from 10 then back down to 12.5) to treat the relapse my CRP went from 9 to 7. My GP was happy that it was going in the right direction, and seemed doubtful that I was even having a relapse, but was more likely to be "fighting something ". That was 5 weeks ago, I've felt fine since then, have been busy with DIY and had cataract surgery. I'm about to have another blood test next week, so fingers crossed.
Surely cataract surgery might have effected your markers?
Had cataract surgery about 2 weeks ago. Would markers still be raised?
I don't know but stress both mental and physical can effect your system. It is worth checking out. If i can find something i will link it. But suspect someone may be able to help.
Hi pinks. There is no time on this but 2 weeks is not a long time.
Should I worry about my ESR being 13 when often 9?
How are you feeling?
Blood test taken 3 weeks ago, I feel the same as usual. I had bad backache yesterday but am now sure it was to do with working 3 days on the trot, I am a checkout operator in Sainsburys. I haven’t worked today and feel better for it. I am never pain free but it is usually just a bit uncomfortable rather than intense pain. I think the blood test was taken after I had started my taper from 5 to 4.5mg.
It is certainly not as high as it was on diagnosis ( in the high 40s)
Only if it rises further AND you have PMR symptoms too. If it were due to the PMR flaring then you would find a trend on weekly/2-weekly repeat tests. But a lot of things make ESR go up, colds, injuries and all sorts of things.
Detailed ESR & CRP reports usually show a "flagged" value for out of bounds values
needing further attention. My report is flagged at 20mm/hr for ESR; CRP is flagged
at 9mg/L. [CRPhs is flagged at 3mg/L]. see example below:
Component Results
Component.....Your Value..... Standard Range........ Flag
ESR..................... 6 mm/hr........... 0 - 20 mm/hr
I get blood tests monthly to get my ESR and CRP levels checked and they are discussed with my GP at my appointment every 3 months. With Lifelabs here in Ontario, Canada I set up a private profile and have access to any test results online.
My former rheumy also did monthly bloodwork, but would suggest I do it within 2 weeks of a taper/drop. Of note, when I flared the first time my CRP went from 2 up to 12, significant enough for the rheumy to put my pred dose up for 6 weeks before beginning my own, slower taper.
If getting you lab results quicker would reduce your stress, perhaps you could ask if they could be shared with you upon request, and then call into your GP routinely after bloodwork is completed.
As mentioned these are markers that can rise due to other things such a having the flu, an infection, etc. And for some folks they are not accurate anyway. Sounds like your CRP is rising and falling in response to your tapering (like mine), however it is our symptoms that are really what we need to pay attention to.
Thanks for sharing that. I too get blood tests two weeks after every taper. I will take your advice and call in to the GP surgery to get test results - less likelihood of being fobbed off if I phone. I am in the UK and we generally don't have access to online test results here, pity. Perhaps one day. I agree that both CRP and symptoms are indicators of a possible taper, with symptoms trumping CRP. I might not worry too much if my CRP was slightly raised, but I otherwise felt well, although I would also probably not taper or even slightly increase the pred for a short time. My rheumy and GP don't think it's a flare unless CRP is very high, but like you I had a flare when my CRP was highish at 9, with the classic head pains and earache that responded to an increased pred dose.
Since gp receptionists seem to be the gate keepers, what I do is this. My gp has given me a bundle of esr and crp blood test forms. My Rheumy wants me to get a test if I have any recurring symptoms or approx every 2 months and immediately prior to his appointments. When I go to ask for my results I take a hospital letter, hand it to the receptionist and say " this is me, my Rheumy wants me to get my results so that I can tailor my treatment to my blood results". If the receptionist refused I would politely suggest she contact my Rheumy to explain why she was interfering with my treatment. Some of them aren't keen to give me the results but none have refused yet! They never read the letter I give them. These results are not private and we have every right to have access to the information. But we could all do without the stress if it. Stick to your guns and good luck.
A couple of months ago I rang the GP surgery for the CRP figure - 2 or 3 days after the blood test - only to be told the results hadn't come through. The receptionist offered to ring me when they arrived, and I got a call 10 days later!! But when I had a GP appointment the day after my last blood test, he was able to see the results on the comp system. I think it is more a case of inefficiency and indifference on the part of some receptionists, rather than being obstructive, but it still ramps up the stress for me. As you say, turning up in person is better than phoning.
They always tell patients 7 working days at my surgery. I just had a bone scan....4 to 6 weeks for the results.
4 to 6 weeks? I can't get my head around that! When we have a scan over here (Germany), you wait in the waiting room for ten minutes and then they hand the result to you to give to your doctor. What the hell is wrong with the NHS?
I dont know. It shouldnt take that long. Dont know if it a paper lag or if there is an agreed time lag they put in place for gps too. It was the same last time. I asked to be cc'd in this time.
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