Hi - wonder if people with pSS sometimes get raised CRP with pain? I have lip biopsy positive SS but was previously diagnosed with seronegative RA. I’m presently in a lot of pain, particularly in legs - although no sign of swelling and the pain seems more in tendons and bones than in muscles or joints. My CRP is 21 - usually around 12-14.
So is this Sjögren’s or RA or other?
CRP is an inflammation marker, it does not tell you anything more than that.
Thanks but I know this already. However I was told by a Sjögren’s expert that people with Sjögren’s and Lupus generally don’t show raised CRP for inflammation due to something liver related. This is why I’m asking - in case it helps clarify whether I also some other type of inflammatory process going on such as RA or other.
I am sorry, I misunderstood you. Well, for what is worth, I saw a rheumatologist (who you could say was an Sjogren expert) and in trying to diagnose me she tested for everything and did not exclude Sjogren because of my raised CRP.
Also Arthritis Research UK claim the following "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". So that seems to rule out your hypothesis.
Hmm that’s true - have read this as well and was surprised that UK’s leading Sjögren’s expert was adamant that this only applies to PV/ESR, not to CRP. I am actually very cynical about Arthritis Research UK’s Sjögren’s Pages. In my case my inflammatory markers have always been elevated but when I’m in pain they soar so for me I’m quite certain that these markers are significant pointers to how active my Sjögren’s/ autoimmunity is.
Ps I should have said that I was initially diagnosed with seronegative RA so this is why I’m asking.
Well my CRP were elevated but not hugely high, but I have not been diagnosed yet. What you are saying is making me think.
I came across an article which said
Only 11 out of 50 patients with primary Sjögren's syndrome were found to have minimal or moderate increases of C-reactive protein (CRP) levels. Patients with elevated CRP levels did not differ clinically from those with normal CRP levels. Thus, primary Sjögren's syndrome is one of the inflammatory disorders characterized by a relatively low CRP response.
You are right
what does moderate increase CRP mean exactly?
Yay I do like to be right Sirennetta!! I’ve been living in this Rheumatology/ autoimmune bubble for a long time now so my research as a non scientist with lived experience usually pays off - to the point where I notice my doctors relying on my research to make decisions about me - which is a bit of worry?! I often try to play innocent and give them the symptoms clearly described and ask them about my bloods and other signs. But they just don’t have time to play detective with complex patients so they go by very generic criteria. Personalised medicine is a great idea but an increasingly remote one I’m finding.
With ESR - or PV (plasma viscocity as my area lab does) - it’s usually 0-10 is normal and after that it’s raised. Each of us has our own trend though so you need to learn yours by getting copies of your blood results or looking them up online if you can. ESR is much less reliable than PV as it is affected by our weight, age and gender - PV isn’t.
CRP is harder as some labs do a precision on for risk of heart attack - which is 0-5. Others like mine say 0-10 is normal. So mine is usually about 12-14 but has been as low as 5.6 when on steroids and lowers to 7-12 when I’m on immunesuppression. I’m off the latest at instruction from rheumatologist. If I have RA then my high CRP of 21 and PV or 2.00 are quite significant as a markers of disease activity. If I have Sjögren’s only then they aren’t significant. How daft is this??!
I think it just means that the cannot tell by the CRP levels how active Sjogren is, while they can with RA. Of course, sometimes they are both present. I think it is easier to be diagnosed with RA than it is with Sjogren as I have not heard of people saying I had RA for 8 years before being diagnosed, for example. I am not sure, but I suspect that in people with RA the CRP can get really high, probably even much higher of 21 and possibly tends to stay high rather than fluctuate in and out of range. But I have only just began my journey in this complicated land
With you being only at beginning of your journey, I’ll explain my theory about why I think Sjögren’s is so hard for doctors to diagnose compared to RA. I believe this is due to great ignorance in medical circles (particularly in UK) about the huge range of ways it can manifest.
So almost everything you will read about SS will be very skewed towards the dry eyes and mouth, glandular seropositive presentation, because these are the ones who are relatively easy to diagnose with positive Ro and La antibodies. And these are the only people who get to take part in clinical trials.
But Sjögren’s isn't called a Syndrome for nothing and, similarly to Lupus and Vasculitis, there are literally hundreds of presentations.
So you do need to be very discerning about what you read and quote because Arthritis Research UK only gets its information from doctors and clinical trials focussed on Ro positive sufferers.
So my version of active disease is not necessarily referring to severe ocular or oral dryness - although these are an ongoing issue for me of course. But then I’m lip biopsy positive with +ANA and this is what is meant by seronegative - so the tendency for people like me is to present with RA and MS-like version of Sjögren’s.
And when I speak of my disease being active, I mean the RA/MS like symptoms not just the Sicca. When Arthritis Research UK speaks of active disease they mean ocular and oral dryness and Fibromyalgia type pain and fatigue plus swollen glands. They don’t mean neuropathy or secondary RA/ tendinitis or gastric problems or organ involvement that many of us suffer from as part of our version of Sjögren’s.
Also CRP of 21 (we each have to get to know our blood trends as they are unique to us) is actually quite high for most RA sufferers. Mine was 160 when I had pancreatitis and later on, sepsis. But for non infectious/ acute times it is usually 12-14 or lower so for me, so this is high. Most people with RA would be the same as me actually but, unlike me, they would also have swollen, very painful synovial joints which by now would have eroded. This is why it’s easy to diagnose and usually requires treating early on before damage occurs. And for most it fluctuates according to disease activity - if it stays high it means that the treatment isn’t working.
Sjögren’s is a very different disease and sadly, for those like me with the MS variety - a lot of damage occurs to the small nerve fibres - meaning that we can turn permanently numb. And absolutely nothing is done to prevent this so far - probably because we aren’t included on clinical trials.
So the info given out about the CRP and ESR not being relevemant to active disease is a potentially harmful misinformation for us. And I state this as a fact because it’s affected me and others I know who are mostly seronegative. In the US is have been offered IViG but the UK is lagging terribly behind with Sjögren’s.
Thank you, that is very interesting and also very plausible. I know that you have already given me plenty of information, I would be grateful if you could just answer one more question. RA/MS variety? I am experiencing some ocular and oral dryness, it started about a month ago o a little earlier. During the past year, on and off, I have had head aches which sometimes develop while I am asleep, fatigue almost like flu. Pins and needles in my feet that started more than a year ago, then went away for a few months, then came back and so on. Every time it comes back it seems to stay longer. No pins and needles in my hands so far. My fingers and feet feel tight not just in the morning. I had some joint pains but that went. My tendons play up sometimes but only once it lasted a whole week. I have also experience low grade fever. Despite exercising regularly, I sometimes get breathless at the gym while I did not before. Lastly, for completeness,my RA factor has shown positive twice, the first time it was 19, the second time they used 2 other tests, they were both positive, but I do not know how they relate to the usual values. Are my symptoms what you would call RA/MS type?
Well yes could be very mildly at early stages. Sicca dryness for me is just something I manage - never worsens but it’s always easily confirmed by lack of tears, mybomean Gland dysfunction and poor quality mucin on eye surface. Mouth is only mildly dry but throat dryness and thick sputum that makes me cough and choke is increasingly bad. Think I’ve always had these. My Rheumatoid Factor was a weak positive when diagnosed with RA but mainly it was extremely painful and swollen hands and wrists that felt fractured. After 2 years on Methotrexate and Hydroxichloraquine the joints stopped hurting and no sign of erosive damage at all. But MS like symptoms worsened in form of burning feet and legs and hands and arms and I started losing my balance and my gait became wonky. Then I developed same in my face and mouth. Finally after a month in hospital I found everything had turned to tingly numbness and my GI problems worsened. Finally I had a lip biopsy when ANA was very positive (pattern of Scleroderma) but ENA panel for specific antibodies all normal. Lip biopsy was 100% positive for Sjögren’s.
Sjogrens is a much more difficult disease to get help with apart from topical treatments. Systemic involvement is common but too often labelled as Fibromyalgia or ME. If you go on international SS forums you will find so many people of all ages with horrible systemic complications from cancer to renal and hepatic involvement to brain and lungs. It’s just as serious a disease as Lupus.
But here in UK too many rheumatologists just think of it as a disease mainly affecting the eyes, mouth and parotids with fatigue and Fibro and a bit of small fibre neuropathy and IBS thrown in.
In my opinion you need to find out your exact inflammation levels and keep asking about these - especially CRP.
Hope this helps.
Yes, my symptoms are still mild. I don't smoke and I don't drink. I do not put anything in my body except for caffeine, but I have cut down on that too, for the sake of my bone density. What I am trying to say is that I am very much in touch with my body and I think I can almost pinpoint when this all started, from the very faint first symptoms. I did everything and more to make it go away, bone broth included. I think I have slowed it down, but it is catching up with me.
Thank you so much for all the information. I have been looking into alternatives to immunosuppressants and, having found one, I should go for it now, before any serious damage. I shall report on my experience.
I don’t smoke or drink either and have tried all the elimination diets, don’t drink caffeine , do Pilates, take the appropriate supplements etc but I am sceptical that this has made much difference at all. I think I may also have other stuff such as MS or Parkinson’s. If there was a non Pharma cure for autoimmunity then I think most of my Lupus and Sjögren’s friends would be cured as all live in an exemplary way. What non immunesuppressants are you going to try - Hydroxichloraquine, LDN?
It has probably made some difference. As I said, I am convinced that I have slowed it down. I am going to try the Coimbra protocol, which BTW claims 95% success rates in getting MS into remission and reversing some of the damage. I have an appointment with a doctor trained in this protocol coming up in a few weeks as this is not a diy project.
Well the power of the mind and importance of healthy living both come into slowing down autoimmune diseases - particularly if not too far advanced. So I hope it works for you.
But a word of warning - what works well for MS is often very different to what works for Sjögren’s - you can read more by googling Julius Birnbaum M.D on the neurological manifestations of Sjögren’s - John Hopkins University - if interested.
This is a therapeutic approach that relies on high doses of vitamin D to halt the misguided attacks of the immune system, and it has enabled thousands of patients around the world to keep their autoimmune diseases in permanent remission.
It is not used just for MS, although that is how it started. I will read what you suggest, but you should at least consider that I might be onto something quite big. Go on youtube and look for an interview with Dr Coimbra, a neurologist from Brasil. He has now trained doctors not only in South America, but in USA, Europe, Russia and the number will keep growing. The doctor I am seeing is one of them, because as I said, it is not a diy project. I could even get you a link which lists all the doctors trained by Coimbra worldwide.
Yes I actually looked it up and it does sound very credible and interesting I agree. Are you based in UK because I’d be interested to know if there is a doctor here who will act as guide - and if it’s very expensive?
Someone on the Parkinson’s UK forum actually told me about it too but didn’t provide the name of the protocol. I did self test for vitamin D five years ago and was deficient. So I confronted my GP, who had refused to test me, with results. He rather shame facedly agreed that it was very low and started me on AdCal D3 and my RA symptoms diminished and my mood improved.
Now the pain is bad and it feels similar but I’m relocated so will push my rheumatologist to get me tested again when I see her in a few weeks time. If she can offer me nothing effective for the progressive numbness and pain I’ll pursue this further.
But it would be in conflict with my present medical team I suspect as my rheumatologist was the one who told me - when I saw her a year ago - to stop adding D3 on top of the AdCal D3 as it could be harmful to my calcium levels.
And it’s quite a thought to go completely against my rheumatologist and other doctors in favour of an alternative approach - takes a leap of faith that i’ll have to see if I’m ready for!
Ps yes please to the list! 😊