Immunology has shifted to positive - accessing new meds possibly?
 

After five rollercoaster years of a diagnosis of non-eorosive, seronegative RA - my immunology has at last yielded clear positive results. I've had to be allowed to become rather unwell for this to happen but my ANA is now a clear positive, elevated IgG and IgA - CRP has risen slowly from 2 last year to 19 and my PV is 1.98. I'm to have a lip biopsy and ultrasound of salivary and carotid ducts over the coming month.

Meanwhile my rheumatologist has expedited my next appointment to 22nd August. I'm hoping this at last brings an acknowledgment that my SFN and possible Dysautonomia are part of an inflammatory process that needs modifying again. I have already tried for DMARD medicines and am severely allergic so it does mean that options will be limited even if I'm rediagnosed at last with Lupus, Sjogrens or UCTD. But turning gradually more and more numb - to the point where my mouth and left nostril and eye feel permanently anaesthetised - doesn't feel like a good option. I'm feeling permanently tired and vaguely disorientated/ dizzy because of proprioception issues now. I eat very well, research my GI issues and have tried eliminating gluten and dairy to no useful end. I have followed my new neurologist's advice and got back to simple yoga and gentle aerobics. But my balance is still off despite attempts to retrain my brain.

Two neurologists have so far shrugged it off as mild SFN and have felt it unrelated to an ongoing disease process. I am therefore seriously hoping they are now proved wrong.

Several of the members of this community have helped me push for answers more than words can express - I think you probably know who you are so please know how grateful I am. Onwards and upwards!

It's odd to say I'm 'happy' about positive results...but in your case, it means answers!!

First, I must ask what was the actual result for ANA (the number) and pattern?

The number tells how high it was, but more important is the pattern. There are four different patterns that are typically associated with certain AI diseases:

Homogenous---Lupus and mixed connective tissue disease

Speckled---Lupus, Sjogren's, Scleroderma, RA, and mixed connective tissue disease

Nucleolar---scleroderma and polymyositis

Centromere---scleroderma and CREST

At least now, testing will move forward...and therefore, more answers. Your pushing and yet patience have paid off.

Hello Enbloc. I can't access my results so don't know the breakdown yet. But I'm guessing, from the fact that I've been referred for a lip biopsy and MRI of carotid and salivary ducts ASAP - that it's either the Homogeneous or Speckled category. The numbers she told me were 1-320 and she said that this is non specific but with raised IgG and IgA and the high inflammatory markers and SFN - it would be highly advisable that I have the lip biopsy to rule in or out Sjogrens decisively. She said that it is possible to have Sjogrens without much mouth dryness and only mild Sicca. But without a positive lip biopsy result I'd be unable to try anymore immunesuppresant medications (and there are still a few left apparently) unless my RA symptoms return once more. Hope this explains.

Ps to Enbloc: I managed to get a copy of the rheumatologist's clinical letter and he only says that my ANA is positive 1:320 but the rest of my ENA is negative - no pattern outlined. Meanwhile my IgG is 13.80 (5.50-13.00) and my IgA is 4.37 (0.50-4.00). The PV and CRP are both high and my RBCs are high too - these three have almost always been raised to high though.

Certainly, they checked the pattern...it's standard to do so. He may know and just didn't mention in his report.

But, it sounds like they are pushing forward to test for various things...which is good.

How soon will these be done? When do you see him next?

I spoke to him on phone today. Unusually for NHS rheumatology he's brought forward my consultation to 22nd August - two months after my first one with him. He will have lip biopsy and ultrasound results back by then. I fear that I will be abandoned by them if this shows negative though. I didn't ask for a verbal breakdown of my ENA pattern. His English is quite hard to understand and it wouldn't have meant enough to me.

My GP was thinking my high inflammatory markers might be tracked down through yesterday's colonoscopy, but obviously not. I have been told by several people on Sjogrens helpline that SJS is not commonly associated with a high PV and CRP. And the rheum makes it clear that seronegative RA would onlynvery rarely cause SFN. He thinks Lupus would have caused kidney and lung problems by now as I'm post menopausal. I admit I'm still very anxious about Multiple Myeloma now I've read my blood results -including the raised RBCs. Heck why was I born such a worrier?!

Hey Mat,
Worry is something that, at times can be helpful; but you know too much can add some very unwanted stress.

You did manage to have some worry removed with your colonoscopy turning out well. As you know; that is a real plus.


Gerry

Gerry, my worry was never about having bowel cancer because I do trust my instincts and these told me that I only had a couple of haemorrhoids. I just knew that in my case, the colonoscopy would be unlikely to give me the clues about what is wrong. I also felt that I didn't have an IBD.

It is much harder to diagnose MM (I have a friend with it) and lots of my signs and symptoms point to it. But my instincts say that I might well have Sjogrens - hopefully the lip biopsy will yield positive results at last and then I will feel as if I've won the lottery! You can't hold worry down in a born Worrypot like me!

You are right though about knowing too much. But when two rheumatologists both run specific tests then inevitably I wanted to know what these tests were for. The first time I checked out the Bence Jones and sighed huge sigh of relief when it was negative (5pm Xmas Eve). By the time the second one showed negative I had learned that only 50% of those with Multiple Meoloma have positive Bence Jones. Finding out that I have Sjogrens or Lupus or my RA comes back will feel very good - but if not then my knowledge will have me pushing harder than ever for answers and that won't be a bad thing. Mat X

Mat,
You had mentioned why were you born such a worrier.
I was referring to worrying too much can lead to some unwanted stress. Not knowing too much leading to unwanted stress. Sorry for the misunderstanding. Of course you want answers.




Gerry

Have they done the skeletal survey...basically an xray of every large bone? This is standard test for MM and what they did for me since I have MGUS and positive light chains in blood, and therefore at higher risk for multiple myeloma. Of course, there is also the bone marrow biopsy...that is a definitive test for MM.

I think if they thought it was MM they would be doing this tests (bone survey and biopsy ASAP).