CRP and PV as part of monitoring Sjogrens?
Posted , 6 users are following.
Hi - I'm into my seventh week on Mycophenolate Mofetil for my Sjogrens (thought to be primary). I was previously diagnosed with RA five years ago and have already spent a few years on related drugs. This is the first one I've so far tolerated very well and I think it's starting to work overall. However when the GP practice monitors my bloods I get results back for ESR, PV and CRP (I'm under two practices just now as in the middle of a complex relocation). As usual they are all raised - ESR 54, PV 1.87 and CRP 14.
My question is - are these useful markers for monitoring those of us with Sjogrens because I've read that our markers will often be very high regardless of disease activity?
And yet a six month period on oral steroids took my CRP right down to 2.5 so I'm guessing that the inflammation markers do reflect when something is amiss for me? I was disappointed by these blood results as I was hoping they would show that the Mycophenolate was working to reduce my inflammation levels at last.
They have been much higher previously but also much lower too (apart from PV which is only tested infrequently - often says "insufficient bloods" and was 1.98 at the last reading six months ago). I'm more familiar with the ESR than PV - which has replaced ESR in my new area.
1 like, 22 replies
aitarg35939 Tumtum1963
Posted
Yikes, Tumtum, I had a flashback to the '70s when interned in DC & had to learn to read Acronym Soup! Is there a primer out there somewhere?
(Of course if I had a decent rheumo maybe I'd know these tests & numbers)
Tumtum1963 aitarg35939
Posted
Ha ha yes that's PVA - a plastic glue primer! Should have written Plasma Viscocity - oh well too late now! (Ps could never spell the full names of ESR or CRP!). All proteins in the blood m'dears!
Megheart Tumtum1963
Posted
Tumtum1963 Megheart
Posted
The ranges for PV and CRP are fairly generic. My CRP is currently 14 (it got up to 160 when I had pancreatitis) which isn't particularly high for me but on steroids mine got down to 2.5. The ranges vary from lab to lab in so far as there's a more sensitive on for cardiovascular disease that is 0-5 and another used by hospital rheumatology lab that is 0-10.
My PV range is 0-1.72 and my PV is presently 1.86. ESR was 54 and range is 0-10. Hope this helps.
cath23317 Tumtum1963
Posted
I'm also on Cell Cept wich is another name for it, I take it to protect my liver, I have cirrosis of the liver due to my imune attacking it, it is good for that, hope it's useful
Tumtum1963 cath23317
Posted
Thanks. I haven't yet got any liver or kidney involvement but my GGT is high, I have a very large kidney cyst and microscopic haematuria and my BP is high. I have tendonitis everywhere and very diffuse small fibre neuropathy with presumed autonomic dysfunction. Great to know you get on well with it. I seem to be responding very well to it too so far.
margaret22116 Tumtum1963
Posted
Tumtum, I have no definite answer on this I'm afraid but can share experience. I use mycophenolate too for Behcet's and find that I also can have higher readings than I'd expect when feeling good and also much lower levels than I'd expect when feeling bad. Weird. But there it is. Not terribly reliable I guess in the end. X
cath23317 margaret22116
Posted
Hi Margaret22116 It's terrible, Iv'e got a lot of other problems as well, When people ask how are you feeling, I just say fine, and think to my self jump inside my body and find out are there any people feel like me xx
Tumtum1963 cath23317
Posted
amkoffee Tumtum1963
Posted
I assume you're seeing a rheumatologist for your RA. I'm wondering given your new inflammation markers if you have a disease called poly Malaysia rheumatica also referred to as PMR. It causes joint and muscle pain and is treated with prednisone. Once your on the right dose of prednisone most of the pain will subside. Unfortunately this disease is often thought by most rheumatologist to be an old person's disease. And that you have to be 50 years old or older to have it. I don't know how old you are but if you're younger than that that may be why your rheumatologist has not suggested that as a diagnosis. But new information on PMR they have found that age is not necessarily an important aspect of this disease. There have been many cases of people in their thirties having PMR. Unfortunately most rheumatologist do not keep up with the latest on PMR so they will argue this point.
You really ought to read up on PMR to see if it fits your pain that you have. And if so bring it up to your rheumatologist. Because it's an easily treated disease where you start out on 15 to 20 mg of prednisone and then slowly taper it down a low enough dose that will still control the pain and inflammation.
And the good news about PMR is that you can go into remission after two to three years on average.
amkoffee Tumtum1963
Posted
I have another comment to add because I didn't read other people's comments before I left my previous one shame on me.
First of all the ESR I can't remember what the E stands for but the S R stands for sedimentation rate also often referred to as sed rate.
The CRT stands for C-reactive protein. And a 2.5 is quite high for a CRT. And I'm understanding that that's your lowest it's been. That's really not too good. I can't remember the exact normal but it's something like 0 - .5 or something close to that. So you can see how much higher years is to the normal.
Tumtum1963 amkoffee
Posted
I know all about PMR 5 amkoffee. But I dot have this kind of muscle pain at all - im fact apart from flares of neuropathic pain sometimes and some Osteoarthritis pain occasionally - I don't suffer much from pain. My problems are more with numbness, tingle, disequilllbrium and GI problems, tinnitus, dry eyes and severe weakness in my arms and legs. Nothing shows up in my nerve conduction studies but my ANA is positive and I always have high Sed rate (as you guys in US call it!) or PV and CRP.
I am 54 and was apparently misdiagnosed with and treated aggressively for RA five years ago. My diagnosis has changed to primary Sjogrens based on a +ANA and very positive lip biopsy. I do have many of the symptoms and signs of diabetes but don't have this disease so I'm told by my new rheumatologist that this is Sjogrens - which is a definite for me. I also have mild Raynauds and Hashimoto's Hypothyroidism. I worry a lot about having all this inflammation in my body always but am told by my rheumatologist that this is invariably a sign of Sjogrens because of lack of moisture in the blood. Maybe it's a mark of how advanced my Sjogrens is if others here don't have this too? My lip biopsy result was very positive (100%) but I'm seronegative for ENA panel abc the pattern of my ANA is nucleolar - which is more indicative of Scleroderma or Polymyositis. I think I probably have MCTD/ UCTD as well as Sjogrens but for now they call it primary Sjogrens.
Both my parents died suddenly of cardiac arrest so the inflammation concerns me a lot but I'm having a full work up for cardio stuff soon i.e. Stress tests. The thick blood from Sjogrens is assumed to be the cause though. Hope this clarifies why I'm asking about this here.
Tumtum1963 amkoffee
Posted
Hi again - don't know why my comment awaits moderation as no link attached or dubious content?! I never got a chance to check it for typos so maybe a word came out rude by mistake?! Just to say I don't have RA it seems - this was misdiagnosed and treated. I'm 54 (not really old!) but don't have PMR. I'm told that high "Sed rate"/ PV and raised CRP are a hallmark of Sjogrens because of lack of moisture in blood. Don't you have this too?
And I meant to add that it's not "shame" on you at all for impinge the gun as our reference points can be different with lab result acronyms and my replies can be rather long as I have a complicated rheumatology story! Take care and please do let me know if you or others reading this have high inflammatory markers as part of your Sjogrens. I think the rheumatologists in my hospital take
their lead from the information given out on the Sjogrens page of Arthritis Research UK.
Tumtum1963
Posted
Quote from Arthritis Care UK
Blood tests – People with Sjögren’s syndrome often have high levels of antibodies in their blood. These can be measured with blood tests. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.
"People with Sjögren’s syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren’s syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis."
amkoffee Tumtum1963
Posted
Well Tumtum it looks like your comment that was moderated did finally come through. And I'm glad to hear you don't have PMR and that you knew about it surprises me. Short of doctors I don't think I've ever known anyone who didn't have it and knew it would it was. But I'm certainly glad you don't have it. Sjogren's syndrome is enough without having PMR to. Believe me I know. The pain from PMR can be unrelenting at times. Good luck on your journey through all of this complicated medical stuff.
Tumtum1963 amkoffee
Posted
I know quite a few people who have had PMR - a neighbour, my mother-in-law, my late grandmother and several friends. I have to say that all have been much older than I am and all have recovered after a period of time on steroids. None have persistent autoimmunity like I do.
There's no recovery from Sjogrens as you know - it just slowly progesses. I did have all the pain of polyarthritis/ RA for two years but it resolved with Methotrexate injections, steroids and Hydroxichloraquine. Unfortunately I became severely allergic though so had to stop all these drugs. Pain is no picnic of course, but for me personally the numbness, lack of taste, swallowing/ reflux and bowel issues plus tinnitus, limb weakness, pins and needles in face and disequillbrium are all worse than even the excruciating polyarthritis was. And this is why I'm asking about inflammation levels being high because it's rather sinister when there's no obvious or visible cause?
cath23317 Tumtum1963
Posted
I'm on a lot of meds, but not on the one you are on, I'm on steroeds for my liver and that seems to keep a lot of symptoms away, I hope that will help in any way xx