Autoantibodies and ANAs

Malea

Senior Member
Messages
237
Likes
586
I have to tell my (family) doctor tommorrow about the autoantibodies I tested positive for. (Adrenergic, muscarinic ACh and angiotensin)
At the same time I have negative ANAs (1:80) and I worry that my doctor will think that there can‘t be a problem because of the negative ANAs. (That is what a rheumatologist told me a few weeks ago)

Does anybody know why the ANAs can stay negative even though there may be a lot of autoantibodies?
 

Lisa108

Senior Member
Messages
482
Likes
1,501
As I understand it, ANAs are a totally different type of autoantibodies. So the ones you tested positive for couldn't show up in a test for ANA (and vice versa).

The ANA test is not a general unspecific test to see whether you have autoantibodies (or not). It is specific and searches for "autoantibodies-that-bind-to-proteins/protein-complexes-in-the-cell-nucleus".

The autoantibodies you tested positive for are targeted against receptors.

So the rheumatologist could only rule out diseases that are associated with ANAs (Lupus, Sjögren's,...). But there are lots of other diseases that are associated with different (not ANA) autoantibodies.
 

Malea

Senior Member
Messages
237
Likes
586
The ANA test is not a general unspecific test to see whether you have autoantibodies (or not). It is specific and searches for "autoantibodies-that-bind-to-proteins/protein-complexes-in-the-cell-nucleus".
Thanks a lot, @Lisa108. That makes total sense!

And I assume a general unspecific test that would also detect autoantibodies against receptors might not exist?
 

manasi12

Senior Member
Messages
124
Likes
213
I have to tell my (family) doctor tommorrow about the autoantibodies I tested positive for. (Adrenergic, muscarinic ACh and angiotensin)
At the same time I have negative ANAs (1:80) and I worry that my doctor will think that there can‘t be a problem because of the negative ANAs. (That is what a rheumatologist told me a few weeks ago)

Does anybody know why the ANAs can stay negative even though there may be a lot of autoantibodies?
There may be washout of few autoantibodies while processing and leads to lower ANA. That's what I overheard from a learned rheumy.
 

Gingergrrl

Senior Member
Messages
14,690
Likes
43,829
There may be washout of few autoantibodies while processing and leads to lower ANA. That's what I overheard from a learned rheumy.
Can you explain what that means? Did the rheumy say that certain autoantibodies can actually make the ANA titer appear lower than it really is?! (or do you mean something else)?

And good luck @Malea for your appt. I had negative ANA of 1:40 in 2013 and 2014, even when I had a diagnosis of Hashimoto's (autoimmune thyroid), with very high levels of both thyroid autoantibodies. So I know that you can have thyroid autoantibodies and still have a negative ANA.

I did not test it in 2015, but in 2016, my ANA was positive at 1:160, speckled pattern and by then I was positive for 7/9 Cell Trend autoantibodies, anti GAD65, and the N-type Calcium Channel Autoantibody (that correlates w/LEMS). But none of these are common tests like the auto-abs for RA, Lupus, Celiac, etc. I really am not sure which autoantibodies correlate with the ANA?

After two years of IVIG, and one year of Rituximab, my ANA is now negative again at 1:80. My cell trend auto-abs are less (now four positive instead of seven, plus one of the new ones... so technically 5/11 positive now vs. 7/9 positive in 2016). My anti-GAD65 is still positive (but is much lower) vs. my CA+ Channel autoantibody is slightly higher. And my thyroid autoantibodies are much lower (but I was told they will never go negative). I doubt that any of what I just wrote was helpful :confused::(:whistle:... It just seems that autoantibody levels do not always correlate with symptom severity, at least not in my case.
 

Gingergrrl

Senior Member
Messages
14,690
Likes
43,829
Thanks. It went well, back in May ;) Luckily, my gp directly believed in the Antibodies and didn’t have to question them.
Sorry, I didn't realize the appt was back in May! :oops::bang-head: But... I am glad that your GP believed in the autoantibodies and didn't question them.
 
Last edited:

manasi12

Senior Member
Messages
124
Likes
213
@Gingergrrl..yes ,to some extent. My ANA titre was 1:100 but I have SSa and anti-beta glycoprotein antibodies. So he said that SSa gets washed out frequently while processing giving low ANA titre.
He is the reputed rheumatologist in my country so I guess it is true. But he doesn't know connection between POTS and these autoantibodies. But he thought Imuran is quite risky to try. So still no treatment as I don't want to take plaquenil as I am afraid of retinal toxicity. As I have experienced rarest complications in simplest things, I refused it.
 
Last edited:
Messages
380
Likes
316
Location
southeast asia
I have AI and pots symptoms, palp tachy. but theres no test here for AI adrenergic, muscarinic, etc.

Can people explain what symptoms appear if someone have AI due to muscarinic/adrenergic issue?

Also what can help to fix/reduce the issue?
 
Last edited:

Gingergrrl

Senior Member
Messages
14,690
Likes
43,829
@Gingergrrl..yes ,to some extent. My ANA titre was 1:100 but I have SSa and anti-beta glycoprotein antibodies. So he said that SSa gets washed out frequently while processing giving low ANA titre. He is the reputed rheumatologist in my country so I guess it is true. But he doesn't know connection between POTS and these autoantibodies. But he thought Imuran is quite risky to try. So still no treatment as I don't want to take plaquenil as I am afraid of retinal toxicity. As I have experienced rarest complications in simplest things, I refused it.
@manasi12 I never saw that you tagged me back in Jan or I would have replied then! I'm still not sure that I understand what your doctor means re: the SSa getting washed out while processing and making the ANA titer lower? I'm not at all saying that it is incorrect, just that I don't understand it. I do agree though that Imuran is very dangerous and it would be on the "last resort" list for me b/c it wipes out your entire immune system vs. other drugs that are much more targeted and specific. I have never tried Plaquenil, although I do know many who have and were okay with it.

I have AI and pots symptoms, palp tachy. but theres no test here for AI adrenergic, muscarinic, etc. Can people explain what symptoms appear if someone have AI due to muscarinic/adrenergic issue? Also what can help to fix/reduce the issue?
There is no test for it in the US either (that I am aware of) and the only lab that I know of is Cell Trend in Germany (and I think there might be a couple other labs in Germany that now test for these autoantibodies, too)? I am not sure if the symptoms are actually different vs. it would show that the cause of the symptoms are autoimmune (vs. another cause). If it adds to an already existing picture of autoimmunity (like it did in my case), then the treatments might be some combination of autoimmune meds, high dose IVIG, plasmapheresis, Rituximab, etc. I think it would really depend on the individual case.
 

Mel9

Senior Member
Messages
995
Likes
2,857
Location
NSW Australia
Wish I could keep up with all these acronyms

AI? (Sorry, What is that again?)

Muscarinic acetyl choline receptors: from my limited understanding, if these are blocked by antibodies, nerve to muscle messages are affected. This is my problem I think.

Mestinon allows more free acetyl choline to accumulate to counteract the effect of these antibodies.?
 
Messages
380
Likes
316
Location
southeast asia
Yes ive read about it.
For my AI i only got steroid at the moment but for some people i read they can get rituximab, ivig, plasmapheris (also for other AI like GBS) but those are really expensive.
Anyway it seems treatment for AI is similiar to each other(immunosupressant, ivig, ) i wonder if steroid could reduce the antibody/the AI for adrenergic/muscarinic?
Or maybe i should try ivig, plasmapheris. But i its so expensive.
 

Gingergrrl

Senior Member
Messages
14,690
Likes
43,829
In the past I have worked with Artificial Insemination(on farm) and my husband worked on philosophy of Artificial Intelligence (computing). I didn’t think either of those were likely.
Nope... definitely not either of those ;)

For my AI i only got steroid at the moment but for some people i read they can get rituximab, ivig, plasmapheris (also for other AI like GBS) but those are really expensive.
I know that steroids are frequently given in autoimmune (AI) diseases and I was put on Cortef in 2015 when my allergic reactions and anaphylaxis were out of control. When you said "GBS" is that "Guillain Barre Syndrome"? If so, I know that high dose IVIG is one of the core treatments that can reverse acute GBS.

Anyway it seems treatment for AI is similiar to each other(immunosupressant, ivig, ) i wonder if steroid could reduce the antibody/the AI for adrenergic/muscarinic?
I don't know enough about all of this to give a good answer but I have not heard of steroids reducing autoantibodies (vs. IVIG reducing fully grown autoantibodies and Rituximab killing the B-cells to stop new autoantibody production). I think that steroids are more to control symptoms.

Or maybe i should try ivig, plasmapheris. But i its so expensive.
Do you have a doctor now who is following your case? Would these treatments ever be covered by insurance in your country (if a doctor prescribed them)?
 
Messages
380
Likes
316
Location
southeast asia
Nope... definitely not either of those ;)



I know that steroids are frequently given in autoimmune (AI) diseases and I was put on Cortef in 2015 when my allergic reactions and anaphylaxis were out of control. When you said "GBS" is that "Guillain Barre Syndrome"? If so, I know that high dose IVIG is one of the core treatments that can reverse acute GBS.



I don't know enough about all of this to give a good answer but I have not heard of steroids reducing autoantibodies (vs. IVIG reducing fully grown autoantibodies and Rituximab killing the B-cells to stop new autoantibody production). I think that steroids are more to control symptoms.



Do you have a doctor now who is following your case? Would these treatments ever be covered by insurance in your country (if a doctor prescribed them)?
Yes thats what i meant.

The doctor treat me based on lab result which is different AI than adrenergic, muscarinic, which test arent available here. So i dont know...

The treament at the moment is steroid, i guess it depends on some factor.(i read on website jo1 also can be treated with rituxan, ivig) If its gbs i read on the news they prescribe ivig but its expensive.

Anyway i think the steroid affects cortisol and inflammation. Then i remember my antibody lab result decreased after it, i google it says it acts as an immunosupressant. supress antibody.

But im still unsure if it helps with adrenergic, muscarinic?

I doubt it too. although i hope it does. Also i dont notice any heart improvement from.it.
 

Gingergrrl

Senior Member
Messages
14,690
Likes
43,829
Yes thats what i meant.
Do you mean that you were diagnosed with GBS at one point (or that you were not diagnosed with it but suspected that you might have had it)?

The treament at the moment is steroid, i guess it depends on some factor.(i read on website jo1 also can be treated with rituxan, ivig) If its gbs i read on the news they prescribe ivig but its expensive.
I remember that you tested positive for jo1 but was not sure which other auto-antibodies you tested positive for (if any)? IVIG is one of the most expensive treatments out there and the only option (in the US) is to get it covered by insurance (unless maybe someone did a low dose of SCIG which I did not do).

Anyway i think the steroid affects cortisol and inflammation. Then i remember my antibody lab result decreased after it, i google it says it acts as an immunosupressant. supress antibody.
I think it probably depends on the steroid, dose, how long you took it, etc. The only steroid I have taken is Cortef (hydrocortisone) in the hope of reducing the allergic reactions I was having in 2015. I am not sure that it was considered enough to be an immunosuppressant (but maybe all steroids are, I am not really sure)?

But im still unsure if it helps with adrenergic, muscarinic? I doubt it too. although i hope it does. Also i dont notice any heart improvement from.it.
I don't know the answer and hoping others will reply. I did not notice any changes in cardiac or POTS symptoms from Cortef (but that is not why it was prescribed in my case).
 
Messages
380
Likes
316
Location
southeast asia
Do you mean that you were diagnosed with GBS at one point (or that you were not diagnosed with it but suspected that you might have had it)?



I remember that you tested positive for jo1 but was not sure which other auto-antibodies you tested positive for (if any)? IVIG is one of the most expensive treatments out there and the only option (in the US) is to get it covered by insurance (unless maybe someone did a low dose of SCIG which I did not do).



I think it probably depends on the steroid, dose, how long you took it, etc. The only steroid I have taken is Cortef (hydrocortisone) in the hope of reducing the allergic reactions I was having in 2015. I am not sure that it was considered enough to be an immunosuppressant (but maybe all steroids are, I am not really sure)?



I don't know the answer and hoping others will reply. I did not notice any changes in cardiac or POTS symptoms from Cortef (but that is not why it was prescribed in my case).
I took prednisolone. I dont know if its the same so i google it. And read that theres 2 ingredient in hydrocortisone and prednisolone is just 1. Also it says

Prednisone is 4 to 5 times more potent than hydrocortisone


Wow
i thought prednisone is consider light. Cause theres methylprednisone which is 2 times more potent. I thought i only took light/low dose and theres times it didnt work so well..

anyway about gbs theres news about it in my country thats what i found out about ivig being said very expensive here.

I dont know about scig or if its available here. :( Nice info though