Quote:
Originally Posted by en bloc
You are very lucky based upon what you've reported about your experience...that has taken a long time to get to where you're at. I only hope you get to continue your treatment or try something else if this doesn't produce the results they are looking for.
I have been on the Sjogren's World forum and here for years and most with just Sjogren's symptoms of sicca and some mild organ involvement get Plaquenil, but anyone with neuropathy or major organ involvement gets Cellcept, MTX, or some other immune suppressant or IVIG...without having to fight for it. But the 'vast majority' of Sjogren's sufferers don't have major organ involvement or neuropathy....so you're right. Those only get Plaquenil because that is all they need. You are one of the few I know that has to fight to get treatment when there is clear neuro involvement. Plaquenil does NOTHING for neuro involvement, and doctors know this, so must treat with immune suppressants or IVIG.
The ESR test isn't used as often any more. CRP is the gold standard for inflammation markers. However, my rheumy knows that PsA and Sjogren's shows more often in ESR vs CRP, so runs both. When I have a major flare of PsA (and a joint is in full flare/swelling) the ESR is off the chart, yet CRP not so much. So it's obvious that the ESR does reflect inflammation in certain conditions more so than others. The PV isn't used as often here either...unless we run it under another name.
So how does the UK measure tear production? The Rose Bengal, slit lamp, etc do not determine tear production. I have heard of people having the Schirmer's like you had it done...it was not done properly. Frankly, I don't know if the ophthalmologists would use the Schirmer's if they had their way...but Rheumatologists still have it as part of diagnostic criteria across the globe for Sjogren's. Maybe this needs to change. The gold standard for Sjogren's is NOT the Schirmer's (this is just a tool to gauge tear production) or even the blood markers. The gold standard is the lip biopsy.
Everyone is different and many patients have blood tests that follow their symptoms/flares. Just like you ,I am the same way and my blood tests will reflect flares/inflammation. Maybe they will make it part of your monitoring.
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Thanks Enbloc. Up here in my northerly world they still use ESR in the doctors surgeries and the hospital mainly relies on CRP. Like yours my ESR can go fairly high - but high for me would be about 62- 80 as has also got down as far as 17 when I take steroids or DMARDs. It was 54 last week and this is medium high for me. I look at these results and try to figure out what might be causung the rise from 32 the previous week. So I'm assuming that the flare of SFN was responsible but also wonder about there being an inflammatory component to my lower GI problems - and the fact that the GTT was also up at 64 in my liver function tests. So I know my normal range and use the patterns to confirm what I'm feeling up here in the north. My CRP is always slightly raised usually sits between 5 and 13 (normal range 0-5) and when I have something like a yeast infection or joint pain it goes up to 13-30. The Pancreatitis and sepsis made it soar up to 160 on five occasions. I think it's a good test for infections but like you it doesn't reflect the SFN flares in the way that the ESR always does
When I'm back near my new hospital they don't monitor me in the same way. The labs don't run the ESR/ send rate - they run a test called the Plasma Viscosity (PV). This is the more sophisticated version of the ESR. It requires better equipment and is sensitive enough to not be altered by factors of gender, age and body weight. They will only run this in the two areas of Scotland I've lived in but as it's more expensive they don't do it as often. It has replaced ESR in many parts of the south of England and London too because of its greater reliability. But like you I know my normal ESR levels so I like it. Some people with inflammatory diseases will feel they are soaring at 30 and they are if there normal is 0-5. So it's like a personal thing that we can use to measure against our pain and inflammation levels. Now I'm being told that it's irrelevant as all it shows is that I have Sjogrens which causes these tests to yield high results got plother reasons ie because of lack of moisture in our blood. I managed to argue that this was nonsense with me because mine fluctuates greatly with pain and comes right down when my disease(s) are better controlled. He looked at the screen and had to admit that I was right so tild hi that I will expect the Cellcept to get my PV and CRP right down if it's effective.
Re the attitude amongst medical community towards Sjogrens in the UK - it's so disappointing and depresssing. So many people aren't allowed to go beyond Plaquenil if they don't have other CTDs or established organ involvement. To me this is waiting too late. But in my own new hospital I'm proving the exception to their previous rule and I'm hoping that if Cellcept works for me then others with primary Sjogrens will also be allowed to try it. Fingers crossed. For me just tolerating it so well is a major breakthrough but I've had 13 months off steroids and 20 months since trying imuran so I'm guessing that it might take a bit longer than it would take for some because of my backlog of symptoms. The tiny nerves that are dead can't be bought to life now and they are many - especially in feet, hands and face - so the likelihood is that I'm stuck with the disequillbrium now. If only they had listened to me sooner - but then moving around hasn't helped.
Oh well it's my birthday today and I'm feeling positive! X