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Blood results normal.

bones-bones profile image
4 Replies

I'm afraid you might think this is a silly post but here goes .

I have had Sjogrens / MCTD for some time. I am taking Hydroxychloroquine and Mycophenolate. I have been feeling pretty rough in the past few months but my blood test results have been normal. I always ask the surgery for copy ( gone up to £5 !)

Today's results are again normal ( though I have been feeling much better for the past couple of weeks .)The problem is I am going to see a new Rheumatologist in November and am afraid he'll think I'm a waste of time...... or worse neurotic ,especially as I'm now 74 !

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bones-bones
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HollyHeski profile image
HollyHeski

Not silly at all, In Sjögren's syndrome, the immune system produces antibodies that attack healthy areas of the body. These can be found during a blood test. But not everyone with Sjögren's syndrome has these antibodies, so you may still have the condition even if a blood test doesn't find them. Hope this helps? Hopefully your specialist will look at the whole picture and your history.

bones-bones profile image
bones-bones in reply to HollyHeski

Hi Holly...Thank you for your reply. The thing is I definitely have Sjogrens / MCTD......I've got all the ros and las to prove it. I think perhaps my GP is only asking for blood tests to show that my major organs are not being affected.....thanks I suppose to the Mycophenolate. I shouldn't be complaining because so many here are so much worse. Hope you are (relatively) well.

HollyHeski profile image
HollyHeski in reply to bones-bones

My primary disease is antiphosphilipid syndrome, my Sjogrens came later, I have flare ups often but on the whole I am not doing too bad.

The hydroxychloroquine really helps, I'm on 400mg a day, I did try to reduce but the pain was too bad so went back up to this dose.

Great that your GP is looking wider at the disease, hope all your tests come back with good results. xx

BB if your antibodies for Sjogren's and MCTD are positive and Dr P has diagnosed you and prescribed Mycophenolate - then it's unlikely that a new rheum will be dismissive of you I would have thought?

However, if all your bloods are good and the Mycophenolate is working well but you still feel bad - then there's a possibility that your symptoms may relate to something else. So it's good that your doctors keep a close eye on your symptoms and your bloods, particularly white blood cells etc as you are seropositive which means risk of Lymphoma is higher. Also remember that Mycophenolate isn't usually used for Sjogren's - there is no targeted treatment for our disease and it's progressive - so we have to be realistic about this I guess - although I'm always hoping that they will find a proper treatment for us someday soon of course. X

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