My wife has GCA. I have encouraged her to keep a diary since her problems started. This includes her prednisalone dosage. Since August she has had 6 comprehensive blood tests. Her GP and consultant rheumatologist have been happy to provide the data. I have now entered all the material into a spreadshheet to look at correlations.
Here is a question that perhaps may even tax "pmrpro". After a few months on prednisalone at a maximum of 60mg (now 35) is it the steroids or the GCA or something else that causes recent changes to:-
wbc (raised)
RDW (raised)
haemochromic RBC (raised)
NEutrophils (raised)
lymphocytes (lowered)
Monocytes (lowered)
(Esr, crp normal)
Perhaps at some time it would be valuable to upload data from as many PMR and GCA patients as are willing to participate and analysis the data.
Written by
Tonylynn
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I document dose, time, and how I feel on each day. It helps me with tapering as I can refer to my notes and can often see the mistakes I made in the past?
Thanks. I have suggested to the forum site managers that they might look at providing a spreadsheet with daily input (or less) for all forum members to show drugs and dose, blood tests, how you feel, etc with a view to providing each member with a graphical representation, but more importantly creating a massive database for analysis. Big Data is the in thing at present and sophisticated analysis of huge data banks can identify results that are totally unexpected.
By the time we have enough information the cost will have dropped. We just crowd fund and persuade Amazon or the like to do the analysis for us. In the meantime all the data is collected in a uniform manner and each contributer has access to their own graphical representation of their "journey".
Hi Tonylynn, I would just like to say I think what you say is a great idea and essentially a 'no brainer' -we really should all input our experiences to create a database and inform each other and the medical establishment. I would like to add that my experience is as follows; I had pmr for a couple of months and not realising what it was tried osteopathy and chiropractic etc.Then having had blood tests which showed inflammation and all the symptoms associated with pmr ,on boxing day I started a restricted diet - no sugar,no wheat etc,no alcohol or caffeine and mainly anti inflammatory foods.I stuck to this for about 8 weeks with no improvement whatsoever.Started on 15 mg of prednisolone about 4 weeks ago and my symptoms immediately were reduced by about 80%. I decided it would be good to try reducing the dose and did so gradually by about 10% a day until my present level of only 2.5mg.I have noticed symptoms have returned to some extent but still about 60 to 70% better on average so I will probably not be able to reduce any more but may try just to check.
Corticosteroids typically raise neutrophils and so total white cell count. Neutrophils have also been identified at the site of large vessel vasculitides, both in GCA and others, and it is possible that may be where the prednisolone exerts its antiinflammatory effect - not that, as far as I know at least, anyone really knows the mechanism.
Red blood cell distribution width (RDW) is associated with inflammatory indexes such as erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP). Chronic inflammation is a major component of a lot of autoimmune disease and RDW may also reflect the severity of these autoimmune diseases.
A single dose of corticosteroid suppresses the lymphocyte count within a few hours and it returns to normal after a couple of days - your wife is repeatedly taking pred so it won't recover. They also deplete monocytes. These both are part of the immunosuppressant effect of steroids.
Erythropoiesis (production of red blood cells) in normal human bone marrow is stimulated by corticosteroid therapy so the numbers are likely to be raised. Active inflammation as found generally in autoimmune disease tends to suppress erythropoiesis and so cause what is termed anaemia of inflammation or chronic disease. The autoimmune disorder may also damage RBCs and contribute to the anaemia. The steroids suppress the inflammation, the rate of RBC production returns to nearer normal and the anaemia is usually reversed as a result.
The ESR and CRP should be normal if the corticosteroids are doing their job adequately/the dose is high enough. CRP is produced in the liver in response to inflammation so the level increases, ESR is increased due to the presence of proteins (including CRP) on the surface of the erythrocytes (red blood cells). The corticosteroid suppresses the inflammation caused by the GCA and the CRP and ESR fall.
I've had GCA since September 2014 and keep a daily record of mgs taken, plus a weekly analysis of how I feel, plus monthly ESR and CRP "scores". All useful info when working out why I feel how I do. I'd be happy to share if it would help the wider community.
Re normal ESR/CRP "scores", what is considered normal? I'm currently at 8 for both, though started at 147 for ESR
ESR should be below 20. Until relatively recently they used a formula to work out what was OK at a given age up to age 55: for men, age divided by 2, for women age plus 10 all divided by 2. Since people are usually over 50 when PMR strikes that would "allow" up to about 30. They have now realised the fact many older people have higher ESR levels actually means there is unmanaged inflammation and it isn't normal after all.
CRP depends on the units used but since it is either per litre or per 100ml of blood there is a 10-fold difference and should be less that 1 or under 10.
For some people the ESR and CRP never rise for some reason despite having GCA or PMR. My ESR is usually about 4, it has never been above 7.
My highest ESR was 78 and highest CRP was 179! At 11 mg, starting a slow drop to 10.5 mg my readings on March 30 were ESR 5 and CRP 5.1. These are the lowest readings in three years.
Mine was PMR and I was incapable of doing anything for myself. The day before they finally got me on enough prednisone I felt I was destined for a wheel chair, raised toilet seat, home care, and a home hospital bed. But then again I couldn't lie down in a bed because of pain in my arms and had been sleeping in a lounge chair for weeks. Oh, and I had to have help getting out of that lounge chair. I couldn't lift so much as a dinner plate from the counter to the cupboard! Less than 24 hours after 40 mg prednisone I was ready to dance the jig. And, that day was my 65th birthday.
FYI, they had tried me on 20 and then 25 mg, but I only got worse, to the point of a total meltdown.
ESR 35, CRP 247,................. GP knocking on door at 8.30am because of the high rise in CRP and I was his one and only GCA patient.
In his anxiety about my sight, he had clean forgotten that I had visited him 9 days previously and he had diagnosed a kidney infecton was was treating it. He had ordered the extra blood test to confirm his diagnosis of a kidney infection and was treating me for it.
Both rise when something else is going on, they are alerts that something is wrong. The 'wrong' can be other illnesses, even a common cold.
I gave him a cup of coffee and shared by bacon buttie...........and sent him on his way.......a much releived medic.......
I know a chap whose GP went to his house at 8.30 pm on a Saturday after having reviewed blood tests (and being aware of pain in temple), handed him a prescription for Prednisalone and told him to get it then and there and start taking. He had GCA and is quite his old self again now, but it took about three years. (Also took bisphosphonates and aspirin).
I was called from the surgery at 7am and told to get there asap, when I arrived, 30 minutes later, was sat down and given 60mg of pred and a glass of water. I had to stay there for three hours, although they worked within one hour of swallowing.
It took me five years, ups and downs, other stuff and then remission, into my 7th year as from 1 Jan this year.
What we must all aim for is to make sure every GP is as switched on as yours and my friends. The earlier treatement is started the better and massively lessens the chance of eye involvement if GCA.
I've kept a journal since diagnosis and find it invaluable....meds, blood work, symptoms, trends, drs visits....who could ever remember everything with Pred brain?! 😳....white count had gone up slightly initially with Pred but now on a trend downward, last around 8, never had it that low, so a bit worrisome and will be asking rheumy tomorrow....
So it's Sambucca/CRP 247; me/ESR 147. Any advances?
PMRpro has asked if I've circulated these numbers wider than this stream. I haven't. Would be interesting to see the results. Perhaps PMRGCAuk could take it up. I shall be at the London Support Group meeting later this month and might ask the question.
No - didn't ask if you have circulated the numbers - I meant the looking for others to join a group in the Epping area!
The levels really aren't that significant - other than some rheumies feel that a higher value suggests GCA rather than PMR. But since up to 1 in 5 patients can have either PMR or GCA without ever showing a raised acute phases response (ESR and CRP) - they are only part of a much wider picture.
And I ask the same question - who is going to pay for it? PMRGCAUK is a charity without a significant income.
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