Positive autoimmune trace in blood results

[Looolooo]

Hi, I'm 55, have PV, JAK2. On pegasys inteferon 90mcg every two weeks. Keep fit and well with some niggles I thought normal for a post menopausal woman. But my lovely consultant has just sent me a letter re last blood results that apparently picked up a positive autoimmune trace which she wants a rheumatology opinion on. Now I'm thinking about my niggles in a more paranoid way. Dry eyes, dry mouth, joint pains and an annoying dry cough. What does this all mean?

[EPguy]

Which immune markers were positive?

From your prior posts, these symptoms are new, or newly worse, is that right?

The 1st three symptoms your describe are perfect fits to Sjogren's. The dry cough may also be esp if it's to get relief or swallowing action with the dry mouth, or related to acid reflux. Sjo is a systemic disease that affects everything. Do you yet have any increased fatigue?

You are correct to the concerned, Sjogren's is a dire risk with IFN, see my post Last Dose. Your consultant is well informed to be worried, autoimmune (A-I) is among the worst case risks with IFN and is a US FDA black box warning for side effects, the most severe type warning. IFN seems to have a bias in these cases to Sjo. Thyroid is another, but this is usually addressable.

In my opinion you should a pause the IFN till you can discuss with Dr. and understand these troubles better. This act would have saved me. A Last Dose of IFN can tip Sjo or other A-I from reversible to not so. Mine is the Not so sort.

Note that you may get a lot of negative A-I blood test results. SS-a/b is the most specific to Sjo. But with Sjo up to 40% are SS-a negative, so neg here that does not at all preclude the disease. Your Rheum may recommend a lip biopsy esp if the SS-a is neg. If not you should ask in detail why not since your symptoms are right there. Some Sjo pts take years to get the Dx, as many or most Rheums are not well versed on Sjo. It's best not to wait that long.

You may check my post re Immune Tests I Got.

We are seeing regular, if not common, Sjo presenting with members on IFN of which I am the worst case. The risk is real.

It so happens that you likely will need to pause the PEG soon anyway. As in many recent posts it is not currently being made, and may not be easily avail again till well into next year. For most pts, blood counts will hold for a while upon a pause or discontinue.

[Looolooo in reply to EPguy]

Thank you. Gosh, I thought of all these 'symptoms' as just niggles, so I would not say they are new. With my swimming, tumeric and fish oil, I feel well. Plus newly taking HRT. I do get the occasional fatigue, but only about once a week, although it does hit like a brick wall. Oh dear, I'm a bit worried now! I can be a bit of a 'Polyanna'. (Ignore bad stuff). But I've just received an appointment from rheumatology for 5th November which is quite quick by NHS standards so they must be a bit worried. Bleuurgh.....

[EPguy in reply to Looolooo]

Good NHS is getting you that appt. But be prepared for possibly more vagueness, Rheum and Neuro are black arts in some ways.

That's good that the Sjo like Sx are not acute, nor recently increased. But they are still a critical message that Sjo risk is brewing.

On tumeric, are you taking the high bio avail sort? Combined with fish oil and esp aspirin that most of us take, excess blood thinning is a risk. I've experienced it on different supplements.

[hunter5582]

It is impossible to know what is going on without further information. Prompt follow up is indicated given the possibility of an autoimmune adverse effect from the interferon. That is not to say that is what this is, but it needs investigation. As EPguy indicates, consideration of an interferon holiday is something to discuss with your care team.

Please let us know what you learn and how you get on.

[LongETinUS]

As EP guy points out, this is very serious. In addition to the immediate symptoms disrupting your life, it is well known that some of these AI diseases can can bone marrow fibrosis on their own. They can add to the MPN's effect on your bone marrow and speed up your progression to myelofibrosis. I know because this happened to me.

I too had all these symptoms at one time or other while taking Peg. My Drs were not so vigilant and ignored my symptoms, even after I got sarcoidosis as well. I went from stable ET to needing a SCT in less than 2 years.

Make sure you follow up with appropriate testing.

[EPguy in reply to LongETinUS]

to LongETinUS

I'm sure you know these reports better than I. Looking into it some: Involvement of the bone marrow (with sarcoidosis ) is a rare finding, estimated to be present in only 10%–17% of all sarcoidosis cases"

ncbi.nlm.nih.gov/pmc/articl...

10-17% is not so rare.

I checked same for Sjo "It is extremely rare to have AMF with Sjögren’s syndrome, and there are only 5 reported AMF cases published in the English literature"

ncbi.nlm.nih.gov/pmc/articl...

So it can present with Sjo also.

Both these reports reference steroid treatment as being often effective. But these are not with MPN patients and not clear if it's the MPN sort of MF. I assume your Drs have ruled out these treatment options.

--

Have you checked clinicaltrials.gov ?

This is one example of a sarcoidosis trial:

clinicaltrials.gov/study/NC...

I'm all over it looking at Sjo trials, but the MPN and/or Rux is exclusionary for most.

[LongETinUS in reply to EPguy]

I have not done a full literature search on this topic so take what you will from what follows.

MPNs are described as rare but we have them nevertheless. Yes, primary autoimmune myelofibrosis is rare but it is common enough that Tefferi, one of the MPN specialists at the Mayo Clinic, has published on it. see

pubmed.ncbi.nlm.nih.gov/386...

More to the point:

1) AI diseases are not rare in patients taking interferons, which is why the paperwork has warnings about it.

2) all of these AI diseases turn up inflammation generally in the body, as well as at specific locations depending on the particular AI. Gotlib, at Stanford, told me that all of these inflammatory processes can compromise the bone marrow to a greater or lesser extent. Some AI more than others.

Here is a review of bone marrow fibrosis.

ncbi.nlm.nih.gov/pmc/articl...

Many of the AIs can be treated successfully with steroids or other anti-inflammatory meds. In my case they were not. My Drs are not MPN specialists. I'm stuck with KP in California. They did not know how to administer Peg in a safe manner, transitioning to it, symptom monitoring, side effect monitoring and could not comprehend that the side effects that were referred to by Loolooo had anything to do with being on Peg. Even after I read out the list of contraindications to them from the Peg literature they would not acknowledge the problem. Instead they went into silent mode rather than admit they got something wrong and open themselves up to liability. Unfortunately, this is the reality of healthcare in the US.

I only saw Gotlib as a cash paying patient after I was messed up. That was my mistake. As Hunter always says - see an MPN specialist.

[EPguy in reply to LongETinUS]

Agree on KP, not a great place to get rare specialty care. For those unfamiliar, it's "Kaiser Permanente" a non profit that is tops for routine care but maybe more like NHS for specialty.

I had planned to join upon starting medicare but with MPN and my new Sjo companion I went for the other options. I moved Hubby to regular too.

Agree A-I's are not rare with IFN, we are learning here the spectrum of experiences. Some A-I's get better or stay mild, and some not. Dr Gotlib told me no re-challenge with IFN. I also saw him post-incident. But my Dr is also an MPN specialist; he recommended Rux when I started Bes. I'm still intrigued by Plegridy.

The reports you have are similar to the ones I found in regard to presence of MPN, seems the case studies are largely "autoimmune myelofibrosis" without MPN.

[Looolooo]

Thank you all. I won't scare myself silly but wait until rheumatology appointment but ensure I ask all the right questions. I always compare my blood results with my previous ones but I couldn't see anything worrying this time around Platlets around 250. Hct 0.40. No other clues and everything within reference range except roche alt but this is always high. So I don't know what they are looking at to be so concerned. Maybe they run another test without you knowing?

[Looolooo in reply to Looolooo]

Just noticed C-reactive protein up from 1 (always) to 3 suddenly...

[EPguy in reply to Looolooo]

I agree on the usual MPN numbers. Mine were absolutely flawless at the time of my Last Dose, including metabolics, Dr said bloods looked like I don't even have an MPN. Only regular blood test reaction after the Last Dose was a decrease in HCT, to the lower limit. IFN really worked well other than the side effect.

Sudden changes are of interest. CRP is a broad inflammation indicator but it needs further tests to narrow it down. My CRP remained unchanged and normal even right after the Last Dose as all fell apart, so at least in my case CRP was not an A-I marker.

Feel free to ask more here to get the most out of your Rheum appt.

[EPguy in reply to Looolooo]

Your clarifying the Sjo like Sx are not new, mild, and stable is good. Also IFN alone can cause dryness and pains. So there are innocent explanations - good reason to be hopeful while well informed for that appt, and thankful for a Dr paying attention.