CRP in Sjögren’s

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. 

Ps I should have said that I was initially diagnosed with seronegative RA so this is why I’m asking.

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?

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! 😊

I am going to post a link. As it always happens in this circumstance this will result in my post awaiting to be moderated. I thought I would be able to message you directly but either I do not know how or it is not possible so it will take a while for it to appear. 

There is a facebook group Coimbra Vitamin D for MS & autoimmune disorders which I have joined and I would join if I were you as they have all the information on the group files.

I think people in the UK see doctor in Portugal and I found in the group files all you need to know, including where to stay, which bus to take, etc. So you could combine a week in Portugal (= holiday) and a consultation. This doctor wants the first consultation face to face, the others can be via skype (tests results can be emailed, that kind of thing).

Alternatively there is a nutritional therapist in Dublin and he can skype even the first. Even though he is not a medical doctor, he was trained on the protocol and people rave about him. Also he is on the protocol himself as he has MS, which probably gives him a good insight into the issues.

The cost of consultations varies so it is probably a good idea to contact more than one if you want and find out how much they charge. 

I am going to Italy. There they all charge 100-120 euros for the consultation.

I am taking vitamin D. We do not get enough sun here and on top of it people with autoimmune conditions tend to be "vitamin D restistant" so we are always low, that is one of the issues the protocol addresses. Even if you do not go on the protocol, consider supplementing. The new trend is to say that one can safely supplement up to 10000iu per day, of course many doctors do not know about this.

Google Coimbra protocl explained on youtube. Also you may find an interview of Dr Coimbra with subtitles (over 1 hour) which I think you will like to watch. 

Let me know if I have left out anything. I will post the links separately right after this.

I forgot to mention that you do not need to stop your current medication to start treatment. You can carry on for as long as necessary the treatment still works. Get the benefits first.

Sirenatta I’m in Scotland and am too immobilised and do not have income to travek or pay a doctor in Portugal for this kind of treatment. I’ve researched it already via google and will ask my rheumatologist if she’s heard of it.

If she’s unable to offer me thr big gun treatment I think I need now, then I will certainly and  push her to research this and maybe my university hospital will agree to use me as a guinea pig for this protocol. I’m not scared of immunesuppressants as have been various DMARDs for 7 years now. None of them have prevented the neuropathy from taking hold throughout my body. This is why I posted here about raised CRP - because if it shows I have more going on than Sjögren’s I might be eligible for much more expensive treatments which could slow it down.  

But I am grateful to you for flagging this protocol up at least and wish you luck. I really do hope it works well for you.