Autoantibodies and ANAs

[Gingergrrl]

@Belgiangirl I apologize that I am not able to read your entire posts right now but wanted to reply to the parts where you tagged me.

Also with my low BMI (±15) and immunity problems I am afraid like @Gingergrrl mentioned any heavy treatment - which includes imuran and rituximab - will kill me straight away.

I'm not sure what you are referring to and I wish I had a low BMI like you mentioned but am not even close! I do know that I've mentioned in a few threads that my main doctor felt that Imuran was far too dangerous for me (back in 2016) b/c it wipes out the entire immune system. But I definitely did not say that re: Rituximab which is targeted just at B-cells. I credit Rituximab (along with IVIG) for giving me my life back and I definitely NEVER said that it will "kill you straight away" as you you quoted me above. I am hoping you can clarify that and not attribute a statement to me that I did not say. There are cases even where Imuran is the appropriate treatment, it just was not in my own case per my doctor.

@Gingergrrl as I read it what was the purpose of your treatment? In your country the goal is to make all antibodies back negative again.

The purpose of my treatment was for autoimmunity. The goal is to reduce the pathogenic (symptom-causing) autoantibodies but they definitely did not turn to zero in my case. I think plasmapheresis (which I did not have) might be able to get them to zero?

But as I interpret it like you state it in your country they judge an antibody

I have no idea what you mean that in my country they "judge an antibody"? I'm assuming you mean autoantibodies but not sure what you mean by "judge"? I had eleven autoantibodies from multiple labs including Stanford, the former OMI, Quest, Cell Trend, and Mayo Clinic. We were not guessing in my case and my doctors were certain of my treatment path.

What country do you live in? (I like this preventive approach of trying not spent all your money on people that are already half dying but prevent they get there instead!).

I live in the US. I'm also not sure if I understand what you mean re: trying not to spend all your money on people that are already half dying? Do you mean the insurance companies not wanting to pay for someone who was already very ill like I was (or something else)? I wish there was more of a focus on preventative medicine here (if that is what you mean)? I apologize for not understanding.

 

[Belgiangirl]

Seems like there are many misunderstandings and I should not have been writing when I was that sleepy or tired. I feel you react like I insulted you, please understand that was not my goal at all.
If I wanted to insult annything it is the health care system in Belgium.

I'm not sure what you are referring to and I wish I had a low BMI like you mentioned but am not even close! I do know that I've mentioned in a few threads that my main doctor felt that Imuran was far too dangerous for me (back in 2016) b/c it wipes out the entire immune system. But I definitely did not say that re: Rituximab which is targeted just at B-cells. I credit Rituximab (along with IVIG) for giving me my life back and I definitely NEVER said that it will "kill you straight away" as you you quoted me above. I am hoping you can clarify that and not attribute a statement to me that I did not say. There are cases even where Imuran is the appropriate treatment, it just was not in my own case per my doctor.

You don't want too. It is a risk factor for... dying. Imuran or I guess also rituximab (chemotherapy I thought?) would be I think in my case risky so I doubt if doctors would give me that if ever needed.
Have been told many times before that I don't have any reserve which puts me at high risk in case of serious disease.

The purpose of my treatment was for autoimmunity. The goal is to reduce the pathogenic (symptom-causing) autoantibodies but they definitely did not turn to zero in my case. I think plasmapheresis (which I did not have) might be able to get them to zero?

Because you said they turned into not visible anymore at titer 80. For us titer less than 80 is not clinical significant or even not measured (but I understand for now they are at 40 so the target was indeed lower autoimmine activity which I am very happy you were able to reach.

I have no idea what you mean that in my country they "judge an antibody"? I'm assuming you mean autoantibodies but not sure what you mean by "judge"? I had eleven autoantibodies from multiple labs including Stanford, the former OMI, Quest, Cell Trend, and Mayo Clinic. We were not guessing in my case and my doctors were certain of my treatment path.

Here they don't do research this expanded, only the ENA panel. Or did you pay this from your own pocket (I wouldn't dare to suggest sth like that but no i am happy with the plaquenil and let it do its work - i just fear for the damage that already has been done).
My symptoms all were not clinical significant, even abnormal blood labs or scans whatever they showed, untill my ANA came back positive. That is what I mean from they "judge the ANA", all the rest apparently means nothing whatever you say or whatever symptoms you have, even long periods of fever or unexplainable disease appartenly.
That is why I ssay "they judge ANA".

And I can't say that I feel more bad since my ANA is positive!!
I have been very ill / bedbound / immobile and restricted in everything I do from 15 yoa (now +30), it seems now I ignored a lot because the fatigue and weakness were so dominant. My days have always been shorter, and unfortunately sometimes I had periods of being bedbound for +1 year... Live passed me,and i was in my bed while children were being born and raised . Well I don't have to tell you how it goes...

I live in the US. I'm also not sure if I understand what you mean re: trying not to spend all your money on people that are already half dying? Do you mean the insurance companies not wanting to pay for someone who was already very ill like I was (or something else)? I wish there was more of a focus on preventative medicine here (if that is what you mean)? I apologize for not understanding.

I mean in belgium it seems they only handle when it is already too late and damage have been occured. They treat reactively instead of proactive.

Pe my rx showed lung damage i was not even been told about. I am sitting here in a very dusty environment, i think it didn't matter since "i am young and healthy" so it wouldn't harm me. As they would have told me, i would take measures pe going out to get out of the dust and chosing a location that has better air quality.
I also spoke to my doctor about it. He said we can't do anything about it and okay when your oxygen saturation is very bad we can put you in hospital/on oxygen - that's about it.

But I am like okay I would like to know what is harming my lungs (possible the auto-immunity which symptom based i already have been having from childrens age ... i am not kidding unfortunately), how can I prevent further harm in terms of medication, lifestyle adaption, ... how are things now and can they be evaluated like in a couople years to see if there is any progress, so we know there should be done more, to prévent that I would become oxygen dependant or whatever in the future... (if it is really the case it can't be prevented forever of course but you see what I mean). The same goes for pe obesity: here it is like oh doctors won't tell you anything about your weight or eating habits, and then all the problems come and people got pill-dependant and eventually need bariatric surgery, and then the process does repeat :-/

 

[Gingergrrl]

@Belgiangirl It is hard for me to read the second half of your post (#63) because it is all inside of one big quote box. But I wanted to reply to the first part.

Seems like there are many misunderstandings and I should not have been writing when I was that sleepy or tired. I feel you react like I insulted you, please understand that was not my goal at all. If I wanted to insult annything it is the health care system in Belgium.

No worries and I was not insulted at all... just confused what you were asking me

You don't want too. It is a risk factor for... dying. Imuran or I guess also rituximab (chemotherapy I thought?) would be I think in my case risky so I doubt if doctors would give me that if ever needed. Have been told many times before that I don't have any reserve which puts me at high risk in case of serious disease.

Rituximab is technically a chemo but it is a MAB drug (monoclonal antibody) and it targets only the B cells vs. something like Imuran that wipes out your entire immune system. My doctor felt that Imuran was much more dangerous (but maybe other doctors feel differently and you would have to check with your own doctor). If you are immuno-compromised, I agree that it would not be the right treatment for you. I did it for autoimmunity and I was not not immuno-compromised.

Because you said they turned into not visible anymore at titer 80. For us titer less than 80 is not clinical significant or even not measured (but I understand for now they are at 40 so the target was indeed lower autoimmine activity which I am very happy you were able to reach.

Every lab (at least in the US) is different re: autoimmune titers like ANA. Some view anything above 1:40 to be positive but others view 1:80 as the cut-off point. Prior to treatment, mine was 1:160, speckled pattern (so it was definitely positive). Hope that helps?

 

[Belgiangirl]

Thank you very much! Sorry didn't knew I screwed it up so much!
Ah for us 1:160 is to some even not positive or borderline positive, but mine is 1:160 and speckled too.

On this moment I suffer from severe breathing problems / lung trouble, thought Plaquenil would save me a lot of trouble but apparently it doesn't, except for the fatigue and brainfog. But now I have another type of fatigue due to the lung issues.
Tomorrow I see a doctor, I hope so much they can help me but indeed in belgium they don't believe your complaints soon and treatment is very conservative and cost is an important motive.

 

[ebethc]

@Aubry and @manasi12

How was your experience w plaquenil?

 

[Gingergrrl]

Ah for us 1:160 is to some even not positive or borderline positive, but mine is 1:160 and speckled too.

I am sorry for my slow reply and that is interesting that an ANA of 1:160 speckled pattern is not considered positive in Belgium. Do you know what is considered positive there?

On this moment I suffer from severe breathing problems / lung trouble, thought Plaquenil would save me a lot of trouble but apparently it doesn't, except for the fatigue and brainfog. But now I have another type of fatigue due to the lung issues.

Have you figured out yet what is causing your breathing problems? I had severe breathing problems for several years as part of my illness and it was completely disabling for me. It ended up being due to a combination of muscle weakness of my lungs & diaphragm plus severe POTS. Then later I started having MCAS/ allergic reactions which were a whole new type of breathing problem.

Tomorrow I see a doctor, I hope so much they can help me

I hope that the doctor was able to help you and that you will update us when you can.

 

[Belgiangirl]

I don't seem to learn the quoting so I am going to do it straight:

Thank you @Gingergrrl for your information and I am very sorry for the clumpsy communication I did before that probably was from a dysfunction emotional point of view based on the bad health care experience (or absence of it) that I have here.

ANA+ at 160 is said to be here in 5% of the general asymptomatic population. Even in me it got ignored... I put the attention on it myself by scrutinising blood labs and the positive test than was +6 months ago... could have easily been 6 years...

This is so interesting. Again your story seems to be quiet similar as mine. No time in my life before I have read something I did so much recognise myself in than in the complaints you wrote about.
Though indeed while a lot of auto-immune antibodies stay untested in my case, indeed I am only ANA positive, apart from other characteristics that are sometimes more or less extreme (leukopenia, trombocytopenia, macrocytair anemia, for years low ferritin and iron on the lower hand, recently higher prompting my professor to go to a genetics doctor. Unfortunately I did not get a referral and I don't think you can get inside without one.


What where the exact lung complaints you've experienced?
For me there are dozens of factors concommitant which can explain the problem or at least be the trigger: extremely dusty environment from constructing site in which i lived in for +6 months, extremed pollution air due neighboors heating their homes or get off of garbage strategies ..., pesticides, It could even be legionella since the boiler broke and did heat unproper and in the garden i got in contact with airborn water heated in the sun...
Only no one ever bothered or took the time to look at the cause!! (See topic I started)

It was elicited half of august (with in maybe 5 years before like 3-4 asthma attacks and upon mentioning this to my gp i got prescribed an inhaler. Nothing ever followed even though for the last year i have been complainting about short breathedness.
After the last extreme exposure (?) things got ugly. Strange thing is I did see a pulmonoligist just weeks before it started: they did test for muscle strength I guess and it was okay. Rx was told to be emphysematic.
Since weeks after seeing the pulmonolist the worse symptoms started and reading this I got to the GP: he couldn't help me he said...

After now almost 2 months which started with almost not being able anymore to walk to a market without extreme unease of extreme heavy breathing and dyspnoe and extreme "air hunger" attacks at evening/night, not so much coughing tough, and pain in my diaphragm (which I had for years intermettently) which i especially feel in the back, also extreme discomfort feeling, feeling of stifness (like your lungs cannot expand) in the morning, and pain and discomfort in the front, sometimes painful breathing, coughing dry, ... everything.
Untill today no doctor took it seriously... though I got a CT (think the other pulmonoligst I saw wants to play safe but she told me according to here I was extremely exaggerating about air pollution eliciting the symptoms...

When heaving this "bad lung period" I drove home, end up in a queu, it was extremely hot with burning sun outside: I got pain in the bottom of my lungs beyond imagination... I unfortunately feel it now too ... since the neigboors are again heating improperly...

So what is left of the symptoms after months is especially extreme burning pain in the bottom of my lungs (diaphragma?) . I cant tell you this is quiet insane. In october I will finally see a professor but I have to make sure that I stay calmed and not start to worship and think him for wanting to see me because than he will think that I am insane for sure. :-/
In (heavy) traffic I get attacks of thickening sensation of throat, noisy breathing and coughing. The noisy breathing (wheezing, murmuring) is actually always present after pollution, and also the discomfort in my lungs start...
Sometimes I felt clear pain in the right bottom...

If this is not an infection, which I guess it isn't (though it might have been in the beginning but is it really impossible to diangose a bronchitis, pleuritis, pneumonia in Belgium? ... I can't believe that :-/ Tried anti-allergics and everything: no relieve yet... got cortisone prescription since 5 days in my wallet though I did a bet on my health - to prove my point which you may all think is insane and to avoid not being taken seriously anymore: wait with getting it untill after the CT...

Since I had lung function tests I guess the muscle strength is tested there too but strange enough it was okay. While a former boyfriend of me (doctor) told me upon seeing my back/shoulders (spontaneously) I had to train (???) because I would get problems... The same guy also told me my disease might be lupus. I laughed with it; Then he told me again: seriously, it may really be lupus... I thought he was copying dr house, should have known better... (tough also this lupus diagnosis is not yet confirmed since the ENA panel was negative and no lupus anticoagulans has been found).

Tough I feel I should look for other auto-immune markers, and seriously, the pain in my lungs is killing me and quiet beyond believe ... on the other hand I try to jog and succeed in doing it now for 15 minutes so I mean half august "the lung thing" kept me almost 90% disabled.
I went to the sea to get better (since I got no medicine treatment not even diagnostic tools!!) and after half a week it indeed cleart somehow but than already I started to notice that upon the smallest traffic my lungs get reactive.
The thing is: try to tell this to a belgian...

I have (severe) POTS too, but I guess that doesn't give pain, does it?
But this POTS is the same like 90%: I say "I might have this since this and this". Doctor: oh yes possibly a lot of people have it. "Are there any tests to confirm or know what degree of severity I have?" "Not necesary, it is nothing serious, just don't get up to sudden"...

I can look for cardiologist being specialised in it but how on earth will I find one. :-/ In Belgium it has almost the status of CFS and fibromyalgia... also a gp ever said I have meunières (sometimes can't stand because everything keeps turning around) but they don't write things done, the same goes when noticing probably pleuritis years before, or follicultis or vasculitis years before... those things would have helped solve the puzzle more early I guess?

 

[Belgiangirl]

@Aubry and @manasi12

How was your experience w plaquenil?

I can answer this too I guess:

got 400 since start of august but since my weight I am overdosing (300 will do). Though cutting the dose makes the symptoms more prominent

Pros:
- Fatigue disappeared mindboggling I would say around 60-75% though I must say I won a lot the last year by injecting Vit B 12 and get vitamin infusions, now it is almost like i have a normal life. Though I do need my sleep. I am not only much less tired. I also do tire much less... so making a daytrip is possible for me without worrying. Bcs of recent move (see infra) now I am tired and sleep untill 10-11am still (so still 12 hours). Hope to update later I need less sleep but since I am able to make daytrips (8am-10pm) I think I might .

- brainfog: also mindboggling ... I have been able to read newspapers, books, ... something that hasn't been possible for so long since my brain was so fogged I couldn't keep focus, it like "clouded away"
Also noted that cow milk and oats for me as breakfast is a recipe for disaster so cutting cow milk makes my brain more clear ...

- Night fever or feverish feeling
could kiss this goodbye after 1.5-2 months? I don't need a thermometer anymore...

- pain in my glands
gone ...

- malaise / flue like feeling is sth, i am ashamed to say, is sth that has got very rare...

when forgetting it (non-structured life...):
- fever sparks back
- butter fly rash gets very intense (how could I not know this was lupus in the first place!! :-/ )
- fatigue and brain fogginess increases
- mouth blistes do appear again

Cons

EYES - got a very strange untill know unresolved eye issue: yellow "spot" in the white of my eye next to the iris. Untill now no explanation whatsoever.
- this sometimes hurts, it is impossible for me to use twilight or flux anymore or to see fireworks: it seems to "burn in" my eye
- a like pain sensation in this "spotted" eye
- swollen veins in this eye
- between nose and eye the eye is much more yellow and also reddish, actually doesn't look quiet well.
bcs of shock I went to ER with this even: eye specialist didn't even notice it, generalist did notice it but thought it was not harmful. No one can make sense out of it. -> will go to oftalmologist again
- other eye is the left one but it is a lazy eye so i won't ever see clear trough it so actually the right eye things are worrisome but no doctor takes them serious

LUNGS
- extreme lung problems actually started only weeks after starting with the plaquenil!
See above and also see other topic I made about it. What it is is still unsure but at least one component of it is much more asthma attacks. But not even that, tough the extreme burning pain at the bottom of my lungs and the lungs stifness and tightness worries me more.

Kidney
- they do hurt more since I take this ...

Skin
- psoriasis now little bit more out of control, associated with this some more hair loss


Effect on blood labs (esp immune system): unknown

I do not know if based on these side effects I can continue taking it safely but I do know that for now I can't miss it ... I do think doctors will be hesitating a lot in changing medications - esp since they come with great costs.

 

[Gingergrrl]

I am sorry for my delayed reply again @Belgiangirl

Thank you @Gingergrrl for your information

ANA+ at 160 is said to be here in 5% of the general asymptomatic population.

1:160 is definitely considered a positive ANA in the US. Many doctors consider 1:80 to be positive while others consider it to be on the border or inconclusive.

This is so interesting. Again your story seems to be quiet similar as mine. No time in my life before I have read something I did so much recognise myself in than in the complaints you wrote about.

That is interesting and I hope that something from my story can be helpful.

What where the exact lung complaints you've experienced?

I had three different breathing issues:

1) The first was due to neuromuscular weakness of my lungs & diaphragm which was ultimately proven to be from autoimmunity. This was the most disabling issue of my entire illness and is 100% gone from my treatments (IVIG & Rituximab) and has not returned.

2) The second was due to POTS and is gone most of the time but if I really overdo it, I trigger a POTS episode. The one thing that I still cannot do it climb stairs. I don't feel that I can say I am in total remission from POTS vs. partial remission.

3) The third was due to MCAS and allergic reactions/anaphylaxis. This tortured me for about 2 years and then went into remission (and possibly cured) from IVIG in late 2016 and has never returned.

Since I had lung function tests I guess the muscle strength is tested there too but strange enough it was okay.

That part is definitely different than me and I showed "pulmonary restriction" on all lung function testing for several years. I could not pass any portion of a PFT or spirometry test prior to my treatments. The inside of my lungs were clear on CT scans, and I did not have any pulmonary obstruction like asthma, and it turned out to be due to neuromuscular weakness.

on the other hand I try to jog and succeed in doing it now for 15 minutes

Do you mean that you can jog (run) for 15 minutes ?!! If so, this is also very different than me and I have never been able to run in my life. I can now walk unlimited distances on a flat surface, and have not used a wheelchair since mid 2018, but I cannot jog or run.

I have (severe) POTS too, but I guess that doesn't give pain, does it?

I have definitely had episodes of POTS that involved angina/ chest pain especially when trying to climb stairs.

I went to ER with this even: eye specialist didn't even notice it

I have never taken Plaquenil but have heard from others on PR that it requires ongoing monitoring of the eyes for safety. Will you be following up with an eye doctor or specialist?

 

[Belgiangirl]

Wanted to share a bloodlab that has been made last month. I am quiet shocked same story as usual: no doctors communicated anything with me and I just had to found it myself (apparenty I didn't look in the right places):

- leukopenia, neutropenia, hyperchromic macrocytair anemia and trombocypenia
--> this is the first blood lab where everything is screwed and it even states it separately in the conclusion ...
No one told me so what to do?
And this is after taking plaquenil (hydroxochloroquine in the US I think?) 1 month ...

- ANA + at 1:160 and now instead of speckled homogenous ... My rheumatologist who saw me the first and decided on starting plaquenil said speckled is aspecific for SLE or auto-immune. Homogenous would be clear SLE.
So now we are this far ...
- fluorescence identity 453
- DFS70 209.3 (is very high reference value is 20....)
C3 & C4 both low ...

Never ever this happened all the same.

upon writing it down here I read it for the 1st stime so i am shocked especially since in conclusion it stresses out absolute leukopenia.
And no-one offered me something to make this betters...

 

[Belgiangirl]

I had three different breathing issues:

1) The first was due to neuromuscular weakness of my lungs & diaphragm which was ultimately proven to be from autoimmunity. This was the most disabling issue of my entire illness and is 100% gone from my treatments (IVIG & Rituximab) and has not returned.

2) The second was due to POTS and is gone most of the time but if I really overdo it, I trigger a POTS episode. The one thing that I still cannot do it climb stairs. I don't feel that I can say I am in total remission from POTS vs. partial remission.

3) The third was due to MCAS and allergic reactions/anaphylaxis. This tortured me for about 2 years and then went into remission (and possibly cured) from IVIG in late 2016 and has never returned.

That part is definitely different than me and I showed "pulmonary restriction" on all lung function testing for several years. I could not pass any portion of a PFT or spirometry test prior to my treatments. The inside of my lungs were clear on CT scans, and I did not have any pulmonary obstruction like asthma, and it turned out to be due to neuromuscular weakness.

Thank you very much for your information!
I am starting to think that my problems will be of similar natures. I just did testing and indeed the values were nothing they had ever seen before and they let me do the test all over and over hoping that they would be able to make sense out of it. :-/ One nurse even thought that I did blew instead of breathing in and the opposite way around... I mean imagine how these generated graphs deviated from what they expected. I did not yet read a report.
It also seemt that I did react on histamin exposure, subjectively I did already feel it immediately so it means that I am asthmatic indeed while according to my GP the CT scan was completely clear. Also did not see the report myself.
But indeed my lungs ad breathing ability react hysterically on any abnormal exposure (traffic, fumes, perfumes, dust of any kind, cats, ...). Can't have a normal life or walk around right now because I know if there would be constructing somewhere or I don't know what I am screwed and need to use the salbutamol which will in turn make me shivering and my heart beating like its gonna blew. So ...but in december I'll meet the pulmonologist again to discuss medication. In Belgium this probably means cortisones.


What is IVIG?

Do you mean that you can jog (run) for 15 minutes ?!! If so, this is also very different than me and I have never been able to run in my life. I can now walk unlimited distances on a flat surface, and have not used a wheelchair since mid 2018, but I cannot jog or run.

Don't jump to any conclusions from this. It probably says more about my character and attitude which is very stubborn and hating to give up even if i kill myself in the process... I wish I could find my stop button and hit it on time. I have been able to do so once in the past 6 months. Today I have a day which is like many others: walking trough the flat and only do the necesary is exhausting.
I have never been in a wheelchair but ... I never had anyone to push me so wouldn't make sense and could be sitting there forever.
That said from the past 15 years I have been completely bed-bound almost 7/8 years, the rest of it I was in the best case scenario able to do just the minimum and not even that ... I was lucky that my neighboor loved doing groceries and did this daily and put it on my stairs since and often cooked for me since she noticed there was not much alive on my floor... going down the stairs was not an option for me. I have called hospital services / doctors to help me and even put me in a hospital crying hysterically that I was not managing anymore. No one ever bothered...

No one has seen me suffering or knows how little I do move around.

I have never taken Plaquenil but have heard from others on PR that it requires ongoing monitoring of the eyes for safety. Will you be following up with an eye doctor or specialist?

Indeed I already did see an ophtalmologist. While some GP's says your blood needs to be tested regularly, other don't mind...

May I ask you a personal question?
In Belgium - and Europe - we don't think very highly about the american health system as in: it is highly inefficient, extremely expensive and of course there is no public health system so people not working can just wait to die...
But I guess you are not professionaly active while you obvioulsy seem to have much better health care access and quality then we do have here. How does this work?
Reading your post I think in the US everything happened to me wouldn't have happened. Only problem is that I have never been able to work more than 3 months full time in my life and afterwards I needed to lay flat and was bedbound for years and years... (while still working out policies for my job in my head: something I can only dream of now).

 

[Gingergrrl]

Thank you very much for your information!

So ...but in december I'll meet the pulmonologist again to discuss medication. In Belgium this probably means cortisones.

I hope this goes well and please keep us posted.

What is IVIG?

It is Intravenous Immunoglobulin.

I was lucky that my neighboor loved doing groceries and did this daily and put it on my stairs since and often cooked for me since she noticed there was not much alive on my floor... going down the stairs was not an option for me.

I am so glad you had such a nice neighbor to help you. I am not able to climb stairs either although I have been able to walk without wheelchair (b/c of my treatments) for about 1.5 years.

May I ask you a personal question? In Belgium - and Europe - we don't think very highly about the american health system as in: it is highly inefficient, extremely expensive and of course there is no public health system so people not working can just wait to die...

I would agree with all of this and it is a fair assessment ... the only exception is the last part that there is a public option now under the ACA (Affordable Care Act) also known as "ObamaCare" and it is not tied to working and no one can be excluded for having pre-existing conditions.

It is expensive if someone does not qualify for the subsidy but they cannot be denied. I had it for several years and am now back on the healthcare plan of my former employer (my situation is a bit complicated/unique and probably would not make sense if I explained it further).

Reading your post I think in the US everything happened to me wouldn't have happened. Only problem is that I have never been able to work more than 3 months full time in my life

I was very lucky (not sure if that is the right word?) that I did not get sick until my early 40's and already had a 16 year career and a private disability plan that I had paid into through my former employer. It's a totally different system here and doctors can prescribe treatments off-label which is what literally saved my life in 2015 when I was having constant anaphylaxis and then led to my remission in 2018. (I am not at pre-illness level, and not sure I ever will be, so I use the word "remission" and will never use the words recovery or cure re: myself b/c it would not be accurate).

 

[kisekishiawase]

I have all of these symptoms, too. But I can’t really say, if these symptoms in my case are caused by the existance of the ABs because so much other stuff is going on that could cause them, too. (MCAS, CCI, probably some form of EDS and so on)

But nearly everyone I met along the way on the internet who had POTS-symptoms and got tested for the ABs, tested positive. (And there have been some studies in the past, that healthy people don’t)

Hello again. I still have a missing puzzle here. May i know more detail about the heart symptoms? And other symptoms that may related tp the beta adrenergic, muscarinic antibody? Im still not really similiar with it. Such as, do all symptoms have to happen and constantly.

Also do your heart issues and pots go nonstop or theres ups and downs? Did it get affected by triggers, avoidance?

Because i wanna know if mine have big possibility come from that too. Since i also have other autoantibody(jo1)

Thank you for reading.

 

[kisekishiawase]

I can answer this too I guess:

got 400 since start of august but since my weight I am overdosing (300 will do). Though cutting the dose makes the symptoms more prominent

Pros:
- Fatigue disappeared mindboggling I would say around 60-75% though I must say I won a lot the last year by injecting Vit B 12 and get vitamin infusions, now it is almost like i have a normal life. Though I do need my sleep. I am not only much less tired. I also do tire much less... so making a daytrip is possible for me without worrying. Bcs of recent move (see infra) now I am tired and sleep untill 10-11am still (so still 12 hours). Hope to update later I need less sleep but since I am able to make daytrips (8am-10pm) I think I might .

- brainfog: also mindboggling ... I have been able to read newspapers, books, ... something that hasn't been possible for so long since my brain was so fogged I couldn't keep focus, it like "clouded away"
Also noted that cow milk and oats for me as breakfast is a recipe for disaster so cutting cow milk makes my brain more clear ...

- Night fever or feverish feeling
could kiss this goodbye after 1.5-2 months? I don't need a thermometer anymore...

- pain in my glands
gone ...

- malaise / flue like feeling is sth, i am ashamed to say, is sth that has got very rare...

when forgetting it (non-structured life...):
- fever sparks back
- butter fly rash gets very intense (how could I not know this was lupus in the first place!! :-/ )
- fatigue and brain fogginess increases
- mouth blistes do appear again

Cons

EYES - got a very strange untill know unresolved eye issue: yellow "spot" in the white of my eye next to the iris. Untill now no explanation whatsoever.
- this sometimes hurts, it is impossible for me to use twilight or flux anymore or to see fireworks: it seems to "burn in" my eye
- a like pain sensation in this "spotted" eye
- swollen veins in this eye
- between nose and eye the eye is much more yellow and also reddish, actually doesn't look quiet well.
bcs of shock I went to ER with this even: eye specialist didn't even notice it, generalist did notice it but thought it was not harmful. No one can make sense out of it. -> will go to oftalmologist again
- other eye is the left one but it is a lazy eye so i won't ever see clear trough it so actually the right eye things are worrisome but no doctor takes them serious

LUNGS
- extreme lung problems actually started only weeks after starting with the plaquenil!
See above and also see other topic I made about it. What it is is still unsure but at least one component of it is much more asthma attacks. But not even that, tough the extreme burning pain at the bottom of my lungs and the lungs stifness and tightness worries me more.

Kidney
- they do hurt more since I take this ...

Skin
- psoriasis now little bit more out of control, associated with this some more hair loss


Effect on blood labs (esp immune system): unknown

I do not know if based on these side effects I can continue taking it safely but I do know that for now I can't miss it ... I do think doctors will be hesitating a lot in changing medications - esp since they come with great costs.

This screams like autoimmunity im confused why it didnt get detected. Some experience are similiar with me, also the bad doctor part.
I also got the yellow spots on white part of eye. But doctor says its nothing. Also since last year got blinking light upon waking sometimes. But doctor check and says no known cause.

I also get pain in the middle of chest when i got worse and body aches might be due to the positive autoantibody.

*editt: i just realized we recently spoke in pm. Thats why i feel something similiar. I often get confused and forgot things.I feel silly.
thank you for the encouragement.

@Gingergrrl i just realized i missed a part of your post after i post on other thread i dont understand why the mcas resolved on ivig? Because i thought mcas isnt from autoimmune?

 

[Malea]

Hello again. I still have a missing puzzle here. May i know more detail about the heart symptoms? And other symptoms that may related tp the beta adrenergic, muscarinic antibody? Im still not really similiar with it. Such as, do all symptoms have to happen and constantly.

Also do your heart issues and pots go nonstop or theres ups and downs? Did it get affected by triggers, avoidance?

Because i wanna know if mine have big possibility come from that too. Since i also have other autoantibody(jo1)

Thank you for reading.

I had some change in diagnostic workup in the meantime, so I‘m not so much looking into autoimmunity for my symptoms anymore.

I‘ve been diagnosed with Atlantoaxial Instability and suspected Craniocervical Instability and my POTS got massively better when starting to wear a neck brace. (I got other severe symptoms which made the neck brace not optional, so the change in symptoms was not a lucky one)


Heart palpitations, heart thumbing hard and other irregularities mainly occur for me when I‘ve tried something new (foods, meds,..) I don’t tolerate or any other stressful episodes.

 

[Gingergrrl]

@Gingergrrl i just realized i missed a part of your post after i post on other thread i dont understand why the mcas resolved on ivig? Because i thought mcas isnt from autoimmune?

I think you tagged me in a few threads so please let me know if I missed anything and I'm not on PR as much any more. The high dose IVIG stabilized my immune system and acted as an immune modulator. It brought it back toward the middle away from the anaphylaxis and insane allergic reactions.

Some doctors believe that MCAS will ultimately be considered autoimmune but others do not. There is still much debate about it and much more research that needs to be done. My MCAS specialist has had many of his patients go into remission from MCAS with IVIG (those like me with MCAS but not Mastocytosis which is primary). MCAS is often secondary to something else which in my specific case was toxic mold exposure.

 

[kisekishiawase]

I had some change in diagnostic workup in the meantime, so I‘m not so much looking into autoimmunity for my symptoms anymore.

I‘ve been diagnosed with Atlantoaxial Instability and suspected Craniocervical Instability and my POTS got massively better when starting to wear a neck brace. (I got other severe symptoms which made the neck brace not optional, so the change in symptoms was not a lucky one)


Heart palpitations, heart thumbing hard and other irregularities mainly occur for me when I‘ve tried something new (foods, meds,..) I don’t tolerate or any other stressful episodes.

Did you mean your heart issue resolved from the neck issue?(heart issue caused by neck problem?)

How did you suspect the neck issue?

Anyway glad to hear you finally found good treatments.

 

[kisekishiawase]

I think you tagged me in a few threads so please let me know if I missed anything and I'm not on PR as much any more. The high dose IVIG stabilized my immune system and acted as an immune modulator. It brought it back toward the middle away from the anaphylaxis and insane allergic reactions.

Some doctors believe that MCAS will ultimately be considered autoimmune but others do not. There is still much debate about it and much more research that needs to be done. My MCAS specialist has had many of his patients go into remission from MCAS with IVIG (those like me with MCAS but not Mastocytosis which is primary). MCAS is often secondary to something else which in my specific case was toxic mold exposure.

I just read about mast cell and people experience palpitation, stomach upset, anxiety after eating. Its similiar to me. But im still unsure(i thought its because of gut issue)

I guess AI and MCAS can be connected its from immune system, right?

I guess people with high allergy, autoimmune are more prone to mcas? Unfortunately its hard to find specialist for it still considered rare.

Endometriosis also said to be connected to autoimmume. I even read that people who got AI should check for it especially if they experience lower belly pain. Why i didnt think of that untill it becomes like this

anyway, thank you for answering. I think ill answer on my own thread later since my thinkin still feel fuzzy.

 

[ebethc]

I had some change in diagnostic workup in the meantime, so I‘m not so much looking into autoimmunity for my symptoms anymore.

I‘ve been diagnosed with Atlantoaxial Instability and suspected Craniocervical Instability and my POTS got massively better when starting to wear a neck brace. (I got other severe symptoms which made the neck brace not optional, so the change in symptoms was not a lucky one)
.

how were you diagnosed w atlantoaxial instability and CCI?

which neck brace do you use?

 

[ebethc]

I think you tagged me in a few threads so please let me know if I missed anything and I'm not on PR as much any more. The high dose IVIG stabilized my immune system and acted as an immune modulator. It brought it back toward the middle away from the anaphylaxis and insane allergic reactions.

Some doctors believe that MCAS will ultimately be considered autoimmune but others do not. There is still much debate about it and much more research that needs to be done. My MCAS specialist has had many of his patients go into remission from MCAS with IVIG (those like me with MCAS but not Mastocytosis which is primary). MCAS is often secondary to something else which in my specific case was toxic mold exposure.

is IVIG/SCIG rx'ed if antibodies are normal BUT MCAS is indicated? do you know?